Volum e 9 Issue 1 Fall 2001

ldquoWhatrsquos My Rolerdquo A Com parison of the Responsib ilities ofInterpreters Interveners and Support Service Provid ers

Susanne Morg an M A CI CT

In d i vid uals who are d e a f-b lind a c cess the world d if fer ently from their he ar ing -sig hte d pe ers To en surem e a n ing ful link a g es to the en vi ron m ent a nd equal ac c ess to in for m a tion a va ri ety of traine d per son nel a ndsup port per sons are re quired In re c ent years m uch at ten tion has b e e n g iven to the d if fer ent roles that in d i vid shyu als play in pro vid ing this sup port The m ost fa m il iar type of sup port is that pro vid e d b y sig n lan g ua g e in ter pret ers For m al in ter pret ing ser viceswere es ta b lishe d to m eet the nee d s of d e a f in d i vid u a ls In re cent ye ars these ser vices have b e e n ex pand e d forper sons with com b ine d he ar ing and vi sion loss This type of sup port how ever d oes not m e et all of the uniquecom m u ni c a tion ne e d s of d e a f-b lind in d i vid u als N or m al ev ery d ay life takes place in a va ri ety of set ting s in clud ing hom e school work and rec re ation For in shyd i vid u als who are d e a f-b lind d if fer ent set ting s re quire d if fer ent types of com m u ni c a tion sup ports As the d e shyvel op m en tal e d u ca tional and so cia l ne e d s of d e a f-b lind chil d ren a nd a d ults in these set ting s are b etterun d er stood the roles and re spon si b il i ties of sup port pro fes sion als evolve Term s use d to d e scrib e these roles in clud e in ter preter in ter vener and sup port ser vice pro vid e r (SSP) The fol low ing chart at tem pts to cap ture the cur rent un d er stand ing of these roles a nd re spon si b il i ties

Interpreter Intervener Support Service Provider

Someone who Someone who Someone who

Trans lates in for ma tion from one mode or lan guage to an other (sposhyken lan guage to sign lan guage andvice versa)

In ter cedes be tween a child and the en vi ron ment al low ing ac cess to in-for ma tion usu ally gained through vi shysion and hear ing

Pro vides sup port that en hances in-de pend ence (eg fa cil i tat ing comshymu ni ca tion pro vid ing sighted guidshyance and trans por ta tion tofrom events)

Works with deaf-blind peo ple of all ages

Pri marily works with chil dren and young adults

Pro vides ser vices to deaf-blind youth and adults who are able to make inshyde pend ent de ci sions

Is a con duit through which in for mashytion flows

Fa cil i tates learn ing and the de vel opshyment of skills (eg re cep tive and ex shypres sive com mu ni ca tion in ter ac tive be hav ior)

Fa cil i tates in ter ac tion be tween a deaf-bl ind per son and the en vi ron ment

In This Issue ldquoW hatrsquos My Rolerdquo A Com parison of the Persona l Perspectives11Responsib ilities of Interpreters Interveners a nd N ationa l Parent Conference Report12Support Service Provid ers1A Support Servic e Provid e r Prog ram in Utah4 For Your Lib rary13Value d Outcom e s for Stud ents W ho Are De a f-Blind Announcem ents14

a nd Their Fam ilies5 Confere nces15Helping Child ren Cope With Grief 7

Fall 2001

Interpreter Intervener Support Service Provider

Someone who Someone who Someone who

May have re ceived pro fes sional train ing in an in ter preter-training pro gram

May or may not have re ceived spe shycific train ing (how ever train ing or coursework is rec om mended)

Is en cour aged to re ceive ba sic train shying in the area of deaf-blindness inshyclud ing com mu ni ca tion strat e gies sighted-guide tech niques and culshytural is sues

Should hold na tional andor state cershytif i ca tionlicensure and may have a col lege de gree

Has vary ing ed u ca tional and vo cashytional ex pe ri ences (some states of fer courseworkcer tif i ca tion)

Has vary ing ed u ca tional and vo cashytional ex pe ri ences

Abides by a code of eth ics Acts in a man ner that is gov erned by the lo cal ed u ca tion agency and fed shyeral ed u ca tion laws Uses the In di vid ual Ed u ca tion Proshygram as a roadmap for learn ing Is con sid ered a paraprofessional and works with but does not re place the teacher

Abides by stan dards es tab lished by the co or di nat ing agency

Be longs to a na tionalre gional or gashyni za tion of cer ti fied in ter pret ers (eg Reg is try of In ter preters for the Deaf Na tional As so ci a tion of the Deaf)

May or may not be in con tact withother paraprofessionals

May be long to the co or di nat ingagencyrsquos net work of SSPs May in ter act with other SSPs dur ing lo cal or na tional events

Will work in var i ous en vi ron ments (eg ed u ca tional med i cal re li gious so cial)

Works mainly in an ed u ca tional set shyting but may also pro vide as sis tance in the com mu nity (eg daily liv ingskills med i cal sit u a tions vo ca tional en vi ron ments)

Pro vides as sis tance in var i ous set shytings in clud ing the home and com mu nity

May be paid in de pend ently through an agency or by an em ployer Is paid com men su rate with cer tif i cashytion amp lo cal stan dard ized fees

Is paid by the lo cal ed u ca tion agency or a com mu nity pro vider

Is usu ally a vol un teer un less funds have been al lo cated

Is re quired to in de pend ently main tain cer tif i ca tion through pro fes sional de vel op ment

Is ex pected to at tend work shops of shyfered in ed u ca tional set tings

Is usu ally not re quired to at tend fur shyther train ing but is en cour aged to im shyprove com mu ni ca tion skills and in tershyact with the deaf-blind com mu nity

Must re main im par tial at all times Wears ldquodif fer ent hatsrdquo (eg as in tershypreter guide fa cil i ta tor)

Re mains im par tial but has more flex ishybil ity than an in ter preter

Must keep all in for ma tion con fi den tial Is al lowed and ex pected to share per-ti nent in for ma tion with team memshybers (eg par ents teach ers re lated ser vice pro vid ers)

Is ex pected to keep in for ma tion con fi den tial

Is ex pected to keep a ldquopro fes sionalrdquo dis tance

Main tains an ed u ca t ional (teacher-student type) re la tion ship

Is ex pected to act in a ldquopro fes sionalrdquo man ner but may de velop per sonal re la tion ships

Acts as a con duit (does not ldquoteachrdquo and is not re spon si ble for en sur ingthat the deaf-blind in di vid ual learns what is be ing shared)

Is ac count able for de ci sion-making to en hance learn ing

Does not teach but does pro vide ac shycess to the en vi ron ment to em powerthe deaf-blind per son

Al ways keeps opin ions to himher self Em powers in di vid ual to make hisher own de ci sions

May pro vide feed backopin ions when asked

2

Fall 2001

References Alsop LBlaha Ramp Kloos E (2000)The intervener in early intervention and ed ucational settings for children and youth with de a fblind ness (N TAC Briefing Paper)Monm outh O R NTAC Tea ching Rese arch W estern Ore g on University Belote M (N ovem b er 1996)Effective use of interveners for stud ents who are d eaf-blind Paper presente d at the TASH Conference N ew Orle ans LA Dea f-Blind Service Center (N ovem b er 2000)Support service provider program g uid elines Se attle De a f-Blind Service Center Dea fb lind Services Minnesota (1998)Support service provid er philosophy and guid elines Minne apolis De a fb lind Services Minnesota Helen Keller N a tional Center (1999)SSP fact sheet Sand s Point N Y HKN C Re gistry of Interpreters for the De a f (Rev e d 1996)Cod e of ethics of the Reg istry of Interpreters for the Dea f Silver Spring MD RID Re gistry of Interpreters for the De a f (1997)Interpreting in educational settings (K ndash 12)(Stand a rd Practice Paper)Silver Spring MD RID Re gistry of Interpreters for the De a f (1997)Professional sig n lang uage interpreting (Stand a rd Practice Paper) Silver Spring MD RIDRe gistry of Interpreters for the De a f (1998)Generalist certification (CI and CT) exam ination inform ation bulletin Introduction to the national testing system (4th e d ) Silver Spring MD RID

Dea f-Blind Per spec tivesVolum e 9 Issue 1

Fa ll 2001

Ex ec u tive Ed i tor M an a ging Ed i tor Pro duc tion Ed i tor John Reim a n Pe g g y M a lloy Rand y Klum ph Te a ching Re search Te a ching R e search Te a ching Re se arch

Con sulting Ed i torsHarry An d er son Florid a School for the De a f a nd Blind Vic Bald win Teaching Re se arch Chig e e Cloning er U ni ver sity of V er m ont Mike Col lins Perkins School for the Blind June Downing Cal i for nia State Uni ver sity ndash N orthrid g e Bud Fre d e ricks Ed i tor Em er i tus Jay Gense Or e g on De part m ent of Ed u ca tion Ka re n Goehl In d i ana De a f-Blind Pro je ct Lori Goetz San Fran cisco State Uni ver sity Richelle H a m m e ttNew Mex ico Deaf-Blind Pro g ra m Gail Leslie Tea ching R e se arch Betsy McGinnity Perkins School for the Blind Barb ara A B McLetchie Boston Col le g e Kathy M cNulty Helen Keller N a tional Ce n ter N a ncy O rsquoDonnell Con sul tant Marianne Rig g io Pe rkins School for the Blind Art Roehrig Gallaud et Uni ver sity Rosa nne Silb erm a n Hunter Col le g e

Dea f-Blind Per spec tives con sid e rs all un so lic ited m a nu scripts and em ploys a re view pro cess to con sid er whether they will b e pub lished Som e m a nu scripts m ay re ceive anon y m ous peer re view Send b oth a printe d copy a nd a d isk copy (W in d ows for m a t) to

Dea f-Blind Per spec tives Te a ching Re search Di vi sion Ph (503) 838-8391345 N Monm outh Ave TTY (503) 838-8821 Monm outh O R 97361 wwwtrwouedutrdbp Fax (503) 838-8150

3

Fall 2001

A Support Service Provid erProgram in Utah

Cord ie W e e d There are not very m any d e a f-blind peo ple inUtah Com pare d to the num b er of peo ple who haveother d is a b il i ties we are a sm all g roup con sist ing of 150 ad ults Ser vices for a d ults who are d e a f-b lind are lim ited State wid e there is only one d e a f-b lindspe cia l ist and one part-tim e re ha b il i ta tion coun shyselor There are also in ter pret ers fund e d b y the statele g is la ture for d e a f-b lind peo ple who re ceive train shying at the Di vi sion of Ser vices for the Blind and Vi shysually Im paire d or who wish to at tend func tionsthere or at the Di vi sion of Ser vices for the De a f orHard of He ar ing These ser vices are very ap pre ci shyate d b ut they b a rely scrape the sur fa c e of the un m etne e ds of d e a f-b lind peo ple in Utah Re cently how ever a new ser vic e b e c am e avail a b le Be g in ning July 1 2001 the state le g is la ture fund e d asup port ser vice pro vid e r pro g ra m For two ye arstwo of m y b lind friend s and I went to the state c ap i shytal in Salt Lake City As m em b ers of the Le g is la tiveCo ali tion for Peo ple with Dis a b il ities we aske d thele g is la ture to fund a sup port ser vice pro vid er (SSP)pro g ra m for d e a f-b lind a d ults W e spent m anyhours talk ing to the leg is la tors W e also con tactedthe m b y phone a nd m ail a nd in spire d oth ers to calland write let ters W e let them know that we wantedto b e m ore in d e pend ent and to live in our own hom es W e aske d for fund ing for the SSP pro g ra mand we g ot it For m a ny d e a f-b lind peo ple life c an b e pretty em pty and lonely For ex am ple one m an who was b ornd e a f-b lind and who is in a nurs ing hom e has no wayto com m u ni cate with the sta ff there They d o notknow sig n la n g ua g e or how to spe a k to him There isno way for him to g et in volved in ac tiv i ties He justsits in a chair all d ay with a b so lute ly noth ing to d o There is a lso a wom an whose fa m ily wants to puther in a nurs ing hom e b e c ause they d o not want toc are for her They fe el that they can not cope with herne e dsIn stea d she chose to m ove into a hous ingcom plex for peo ple who are d is ab le d or have low in shycom es This wom an is un a b le to d o her own shop shyping or care for her per sonal b usi ness She c an notd rive her self any where She ne e d s help to b e a b le tolive in d e pend e ntly I know a m a n who was b orn d e a f a nd spent m ost ofhis years in the d e a f com m u nity As he g ot old er helost his sig ht and was un a b le to con tinue work ingHe is now to ta lly b lind Re cently he and his d e a fwife went to a so cia l a c tiv ity at the De a f Cen ter He

sat there and was b ore d b e c ause he could not se e thesig n lan g ua g e b e ing used a nd no one thoug ht to sig n in his hand s When he and his wife le fthe aske d hiswife if she ha d se en the m an who ha d b e en his d e ar shyest friend for m a ny years She told him that he ha db e e n sit ting next to him a ll eve ning His friend ha dnot said one word to him a nd the m a n was he art b ro shyken Som e d e a f-b lind peo ple live in their own hom es a ndare m ar rie d and have chil d ren Even thoug h theirfam i lies take c are of them they would still like tohave som e one take them out for so cial a c tiv i tiesaway from the fam ily to g ive them a chang e and tog ive the fa m ily a rest I am con sid ered d e a f-b lind m y self I live in m y ownhom e and have a hus b and and two chil d ren Myd aug h ter is m ar ried and has a b a b y My son isg rown b ut still lives at hom e Both of m y chil d reng rew up cop ing with m y d is a b il i ties I have UsherSyn d rom e I am se verely hard of he ar ing a nd havevery lit tle re m a in ing vi sion Even thoug h m y fa m ily has lived with m y in cre as shying d is a b il ity they g row im pa tient and frus tratedwhen I can not he ar or see som e thing I d o not al ways he ar ex actly what they are say ing so com m u ni ca shytion is d if fi cult and m is un d er stand ing s fre quentlyoc cur My hus b a nd has b e e n force d to ta ke on m orere spon si b il i ties b e c ause I c an not shop b y m y self ortravel alone on pub lic trans por ta tion These prob shylem s will only in cre ase as m y con d i tion wors ens I love to he ar what is b e ing said I love to b e a part of it all b ut I a m not b e c ause I can not he ar or se e I a mle ft out a lot and it is very lonely W hen ever I g etfrus trated I can not walk out or g o som e where towork it off I have to stay put un til it b uild s to thepoint where I ex plod e Som e tim es I fe el like I am in ab ox where I can not m ove or let out m y frus tra tionsIwas raise d to b e in d e pend ent and to ta ke c are of afa m ily as well as m y self I wa nt to con tinue to d othat I would like the SSP to help m e b e com e m ore in d e shypend e ntmdash to help m e shop a nd walk m y d og (apure bre d b e a g le ) to rea d m y m ail a nd other cor re shyspon d enc e to m e to b e m y eyes and e ars at so cial ac shytiv i ties and to take m e to m y ap point m ents Thiswould a lso help b y ta k ing som e pres sure off of m yfam ily m em b ers It m e ans so m uch to m e to b e a b leto d o m ore for m y self It m akes m e fe el m ore like ahu m an b e ing W e d e a f-b lind peo ple ne e d ser vice pro vid ers W ene e d help with d aily liv ing in or d er to b e in d e pend shyent It is so m uch che aper to have a sup port ser vicepro vid er tha n to b e put in a nurs ing hom e A sup shyport ser vice pro vid er can b e a friend to a d e a f-b lind

4

Fall 2001

per son and ca n m ake the per sonrsquos life b rig hterSSPrsquos as sis tanc e c an also m ake it e as ier for fa m ilym e m b e rs b y help ing to re lieve frus tra tion a ndstress I re ally hope this pro g ram will work well for m e foroth ers who are d e a f-b lind and for the chil d ren whowill soon b e com e a d ults I hope we will have thispro g ra m for m a ny ye ars and that it will b e suc cess shyful I want to m ake it work and help d e a f-b linda d ults b e in d e pend ent a nd live hap pily I fe el verystrong ly a b out this pro g ram

Valued O utcom es for Stud entsWho Are Deaf-Blind and TheirFam ilies Results of a Survey ofState Deaf-Blind Projects

Lori GoetzSan Francisco State University

N a m ita Jacob Jt Doctoral Prog ram San Francisco State

University - University of California Berkeley

N ora OrsquoFarrellSan Francisco Unifie d School District

Are schools e f fec tively m e et ing the e d u ca tionalne e ds of their spe cial e d u ca tion stu d ents An swersto this ques tion can b e pro vid ed from a va ri ety ofper spec tives A fe d eral law the Gov ern m ent Per for shym ance a nd Re sults Act of 1993 (GPRA) [Pu b ic LawN o 103-62] re quires fe d eral a g e n cies to im provepro g ra m e f fec tive ness and pub lic a c count a b il ity byfo cus ing on re sults ser vice qual ity and cus tom ersat is fa c tion It re quires the es ta b lish m ent of m e a sur shya b le g oals that c an b e re ported as part of the fe d eralb ud g et ary pro c ess In re sponse to GPRA the USDe part m ent of Ed u c a tionrsquos O f fice of Spe cia l Ed u ca shytion Pro g ra m s (O SEP) d e vel oped g uid e lines for spe shycial ed u ca tion pro g ram s that list ob jec tives andper for m ance in d i ca tors for these ob jec tives (O f ficeof Spe cial Ed u c a tion Pro g ram s 1999) The unique ne ss of the a b il i ties a nd ne e d s ofd e a f-b lind chil d ren poses chal leng e s for the cre ation of out com es a nd tools that m e a sure those out com esTo d e ter m ine ways in which the O SEP g uid e linescould b e m a d e m ore m e an ing ful and re flec tive ofthe spe cific e d u c a tiona l ne e d s a nd g oa ls ofd e a f-b lind chil d ren we d e vel ope d a ques tion nairefor state d e a f-b lind pro ject per son nel It aske d re shyspon d ents what they con sid ere d to b e va l ued out shycom es for d e a f-b lind stu d ents their fa m i lies and

5

state and lo ca l sys tem s that pro vid e ser vices W e d e shyfine d a val ue d out com e as a re sult of the school ingpro cess that is b oth in d i vid u a l ized and per ceive d aspos i tive and d e sir a b le The d e vel op m ent of so cialin ter ac tion skills in g re et ing pe ers or a d vo ca cy skills in pro m ot ing in clu sive school ing to a PTA g roup are ex a m ples The ques tion naire also asked re spon shyd ents to id en tify tools and strat e g ies used to m e a shysure these out com es

Results of the Questionnaire In 1998 the ques tion naire was sent to the fifty ex istshying state d e af-b lind pro je cts across the coun tryThese pro je cts are fe d er ally fund e d train ing a ndtech ni cal as sis tanc e en ti ties serv ing schools a g e n shycies and fa m i lies of d e a f-b lind chil d ren and youthPro ject sta ff m e m b ers were in a po si tion to id en tifyout com es that a d d ress the d if fer ent per spec tives ofg roups and in d i vid u a ls in volve d in the lives of chil shyd ren and youth who are d e a f-b lind Twenty-nine ofthe fifty ques tion naires were re turne d a re sponserate of 58 per cent The ques tions were b rie f and open-end ed and d idnot re quire re spon d ents to use a spe cific for m at An shyswers rang e d from sin g le word s phrases and num shyb ere d lists to sen tenc es and para g raphs Given thisd i ver sity in for m at the an swers were a n a lyzed bytwo in d e pend e nt rat ers a nd sum m a rize d in cat e g o shyries of val ue d out com es (se e ta ble ) The c at e g o riesen a b le d a suc cinct syn the sis that hig h lig hte d m a jorfo cus ar e as for stu d ents fa m i lies and sys tem s The rat ers d e vel oped ten c at e g o ries of val ue d out shycom es for stu d ents eig ht for fam i lies a nd five forsys tem -level en ti ties In a d d i tion to id en ti fy ing spe shycific val ued out com es sev era l state pro jects notedthat id e ally val ued out com es for stu d ents and fa m shyi lies should b e d e vel ope d on an in d i vid ual b a sisO th ers com m e nte d that va l ue d out com e s ford e a f-b lind chil d ren and their fa m i lies are no d if fer shyent from those for chil d ren with out d is a b il i ties In ea ch of the three fo cus ar e as (stu d ent fam ily sys shytem ) cer tain re sponses were m en tione d re pe at e d lyb y sev eral re spon d ents Al thoug h the num b e r of re shysponses in e a ch c at e g ory is b ut one in d i ca tor of im shypor tance it is an in d i ca tion of the va l ue d out com esthat are in the fore front of the re spon d e ntsrsquo con shyscious ness The id e as ex presse d m ost of ten in e a chc at e g ory are d is cussed fur ther in this se c tion Growing con cern with the va lue and m e a n ing ofava il a b le in ter ven tions and ser vices is re flecte d inall of the re sponses M ean ing ful par tic i pa tion of thed e a f-b lind in d i vid ual at hom e school and in thecom m u nity is a re cur ring them e

Fall 2001

Stu d e nt O ut com es ldquoCom m u ni c a tion skillsrdquo a ndldquoso cia l skills and friend shipsrdquo were m en tione d re shype at ed ly as va l ued g oa ls for stu d ents Sev eral re shyspon d e nts stre sse d the im por ta nc e ofcom m u ni c a tion skills that are func tional a nd worka cross d if fer ent en vi ron m ents (eg b oth at hom e and at school) Som e re spon d ents stresse d the im shypor tance of the qual ity of re la tion ships They notedthat there is a d if fer ence b e tween re la tion ships withpaid sta ff and those that oc cur with friend s and fa m shyily and they em pha sized the need to en sure that re shyla tion ships are m u tual a nd long last ing Ef fec tive com m u ni ca tion and g ood so cial skills areim por tant el e m ents for suc cess in school en vi ron shym ents The stress on func tiona l com m u ni c a tion a ndm e a n ing ful friend ships re flects the out com es-b ased plan ning em pha sized in the 1997 re authorization ofthe In d i vid uals with Dis a b il ities Ed u ca tion Act(IDEA) There has b e e n con sid er a b le prog ress in thed e vel op m ent a nd re fine m ent of in ter ven tions d e shysig ned to im prove the so cial in ter ac tion a nd com shym u ni c a tion of stu d ents with d is a b il i ties in reg u lare d u ca tion set ting s (Hunt Farron-Davis W renn Hirose-Hata e amp Goetz 1997 O d om McConnell ampMcEvoy 1992 Strain amp Kohler 1995) Fa m ily O ut com es The a va il a b il ity of fa m shyily-specific train ing was the m ost fre quently m en shytioned out com e c at e g ory for fa m i lies Re spon d entsid en ti fie d a ne e d for train ing in the fol low ing ar e as spe cific skills to sup port the child rsquos d e ve l op m ent such as a d a pt ing e n vi ron m e nts and m a te ri alsa nd le arn ing com m u ni ca tion skills a nd tech shyniques

aware ness of avail a b le re sources a d vo cacy skills Sys tem O ut com es Sys tem out com es d e scrib e re shysults that a f fect the struc tures a nd a c tiv i ties of or g a shyni za tions ra ther tha n in d i vid u a ls Re sponsesem pha siz ing col la b o ra tive pla n ning for or g a ni za shytions were the m ost com m only id en ti fie d val uedout com es The in volve m e nt of par ents and chil d renin a col la b o ra tive pla n ning pro cess fos ters sm oothtran si tions and the a chieve m ent of in d e pend encefor stu d ents Pa ren tal in volve m ent in ed u ca tionalpro gra m a nd tra n si tion pla n ning has a lso b e e nfound to pos i tively a f fe ct stu d entsrsquo a c a d e m ic out shycom es (M orning star Turnb ull amp Turnb ull 1995-1996 Everson amp Moon 1987 Sales MetzlerEverson amp Moon 1991) In fre quently Re ported Re sponses Equally in ter shyest ing a nd wor thy of fur ther re se arch are the c at e g o shyrie s tha t re c e ive d the le a st a t te n tion fromre spon d ents Only a sm a ll num b er of re spon d entsm en tione d a c a d em ic skills a nd se lf-a d voca cy as val shy

ued out com es for stu d e nts Only a few m en tionedem pow er m ent as an im por tant out com e for fam i lies or for in clu sion as a sys tem -level out com e Em pow shyer m ent and in clu sion have re ceive d a g re at d e a l ofat ten tion in the g e n eral lit er a ture on spe cial e d u ca shytion (Dunst Trivette amp Deal 1994 Fa lvey 1995) Itis sur pris ing that they re ceive d such sc ant at ten tionhere

Cate gories of Valued O utcom es Stu d ent O ut com es N um b er of Re sponsesSo cial skills and frie nd ship 25In clu sion into com m u nity 16Com m u ni c a tion skills 16Se lf-help a nd in d e pe nd e nt liv ing skills 15

W orkCa re er 14

He alth vi sion and hear ing 12Rec re ation and lei sure 8

Tran si tion 6

Ac a d e m ic skills 5

Se lf-ad voc a cy 4

To tal Stu d ent Re sponses 121

Fam ily O ut com es N um b er of Re sponses Fa m ily-specific train ing 20V alue d m e m b e r of fa m ily a nd com m u nity 15

Re sources for a d ult in d e pend ence 14

Re sources for fam i lies 12Fa m ily sta b il ity 8

Con nec tions for fa m i lies 8

Fa m ilypro fes sional col la b o ra tion 6

Em pow er m ent of fa m i lies 3

To tal Fam ily Re sponses 86

Sys tem O ut com es Num b er of Re sponses Col lab o ra tive plan ning 30Sta ff avail a b il ity and train ing 18

Re sources for com m u nity in clu sion 17

IEPIFSP qual ity 13Ra ng e of e d u ca tiona l pla c e m ent op tions 10

In clu sion 5

To tal Sys tem O ut com es 93

6

Fall 2001

Assessm ent IssuesThe IDEA Am e nd m ents of 1997 pla c e g re at em pha shysis on m e a sur ing re sults throug h im prove d a c shycount a b il ity and d ata col lec tion ef forts There is are newed re li ance on the use of as sess m ents to m e a shysure the per for m anc e of stu d ents and their prog ressto ward m e et ing id en ti fie d stan d ard s In re sponsesto our ques tion naire we id en ti fie d a to ta l of eig h shyteen as sess m ent tools and m e a sures in clud ing sev shyera l cur ric ula a nd in for m a l m e th od s of d a tacol lec tion such as case stud ies and in ter views Notool was m en tione d with suf fi cie nt fre quency to b erep re sen ta tive of the re sponses

Conclusion The OSEP g uid e lines d e scrib e ob jec tives in g en eralterm s such as ldquoim prove ed u ca tiona l re sults for chil shyd ren with d is ab il i tiesrdquoThe re sults of the ques tion shynaire re porte d here re flect how state d e a f-b lindpro ject per son nel in ter prete d these ob je c tives interm s of a c tual prac tice with stu d ents fa m i lies andser vice pro vid ers For ex am ple d e vel op m ent ofcom m u ni c a tion skills and so cial skills and friend shyship em erg e d a s key el e m ents for the ob jec tive of im shyprov ing e d u ca tiona l re sults There are a cou ple of lim i ta tions to the re sults of thisstud y First the 58 per cent re sponse rate lim its theg en er a l ity of the find ings A fur ther lim i ta tion is that the ques tions aske d were very b rie f A m ore d e tailed sur vey or the use of fo cus g roups would a d d to thed epth of the in for m a tion that could b e ob taine d The d e vel op m ent of val ue d out com es for stu d entsfam i lies and sys tem s ca n have d i rect im pli ca tionsfor the eval u a tion of pro g ra ms serv ing stu d entswho are d e a f-b lind a nd their fa m i lies Pro g ram sser vic es and tech ni cal as sis tanc e e f forts that arecon sis tent with the val ued out com es re ported herewill streng then the alig n m ent b e tween ac tual prac shytice and the goa ls of those who as sist and sup portpra c ti tio ners work ing with d e a f-b lind chil d renFur ther stud y a nd d e vel op m ent of val ue d out com es for d e a f-b lind stu d ents a nd the cre ation a nd use oftools to m e a sure prog ress to ward s e d u c a tionalg oals should b e a pri or ity for the field

References Dunst C J Trivette C M amp Deal A G (Ed s) (1994)Supporting a nd strengthening fa m ilies Method sstrateg ies and practices Brookline MA Brookline Books Everson J M amp Moon S M (1987) Transition servicesfor young a d ults with severe d isa b ilities Defining

7

professional and parental roles and responsib ilitiesJournal of the Association of Persons with SevereHand icaps 12 (2) 87-95 Falvey M A (Ed ) (1995)Inclusive and heterog eneousschooling Assessm ent curriculum and instructionBa ltim ore Paul H Brookes Hunt P Farron-Davis F W renn M Hirose-Hata e A amp Goe tz L (1997) Prom oting inte ra c tivepartnerships in inclusive ed ucationa l setting s Journalof the Association of Persons with Severe Hand icaps 22 (3)127-37 Morning star M E Turnb ull A P amp Turnbull H R(1995-1996) W hat d o stud ents with d isa b ilities tell usa b out the im portance of fa m ily involvem ent in thetra nsition from school to a d ult life Exceptional Children 62 (3) 249-60 O d om S L McConnell S R amp McEvoy M A (Ed s)(1992) Social com petence of young child ren withdisabilities Baltim ore Paul H Brookes O ffice of Special Ed uc ation Prog ram s US Departm ent of Ed uc a tion (1999)FY 2000 Annua l Prog ra mPerform a nce Plans und er GPRA Ind ivid uals withDisa bilities Education Act (IDEA) Sub m itted to Cong ress Fe bruary 25 1999 Sales P Metzler H M Everson J M amp Moon M S (1991) Quality ind ica tors of succ essful vocationaltra nsition prog ra m s Journa l of Voc a tiona l Rehabilitation 1 (4) 47-63 Strain P S amp Kohler F W (1995) Ana lyzingpre d ictors of d a ily social skill perform a nc e Behavior Disord ers 21 (1) 79-88

Helping Children Cope WithGrief A Discussion of Options for Parents of Deaf-Blind

Child ren Compile d b y

N a ncy OrsquoDonnellHelen Keller N ational Center

W hen it co m es to par entchild d i a log ues thereare few top ics that cause as m uch anx i ety as sex a ndd e ath W hen those top ics are con sid ere d in thefram e work of d is cuss ing them with chil d ren whoare d e a f-b lind m a ny fam i lies a nd pro fes sion als arele ft spee ch less Early this ye ar I re c eived an e-m a il from a m other inN ew Ze a land who was look ing for g uid a nc e on how to help her son g rieve the loss of his g ra nd fa ther

Hi Nancy

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

Interpreter Intervener Support Service Provider

Someone who Someone who Someone who

May have re ceived pro fes sional train ing in an in ter preter-training pro gram

May or may not have re ceived spe shycific train ing (how ever train ing or coursework is rec om mended)

Is en cour aged to re ceive ba sic train shying in the area of deaf-blindness inshyclud ing com mu ni ca tion strat e gies sighted-guide tech niques and culshytural is sues

Should hold na tional andor state cershytif i ca tionlicensure and may have a col lege de gree

Has vary ing ed u ca tional and vo cashytional ex pe ri ences (some states of fer courseworkcer tif i ca tion)

Has vary ing ed u ca tional and vo cashytional ex pe ri ences

Abides by a code of eth ics Acts in a man ner that is gov erned by the lo cal ed u ca tion agency and fed shyeral ed u ca tion laws Uses the In di vid ual Ed u ca tion Proshygram as a roadmap for learn ing Is con sid ered a paraprofessional and works with but does not re place the teacher

Abides by stan dards es tab lished by the co or di nat ing agency

Be longs to a na tionalre gional or gashyni za tion of cer ti fied in ter pret ers (eg Reg is try of In ter preters for the Deaf Na tional As so ci a tion of the Deaf)

May or may not be in con tact withother paraprofessionals

May be long to the co or di nat ingagencyrsquos net work of SSPs May in ter act with other SSPs dur ing lo cal or na tional events

Will work in var i ous en vi ron ments (eg ed u ca tional med i cal re li gious so cial)

Works mainly in an ed u ca tional set shyting but may also pro vide as sis tance in the com mu nity (eg daily liv ingskills med i cal sit u a tions vo ca tional en vi ron ments)

Pro vides as sis tance in var i ous set shytings in clud ing the home and com mu nity

May be paid in de pend ently through an agency or by an em ployer Is paid com men su rate with cer tif i cashytion amp lo cal stan dard ized fees

Is paid by the lo cal ed u ca tion agency or a com mu nity pro vider

Is usu ally a vol un teer un less funds have been al lo cated

Is re quired to in de pend ently main tain cer tif i ca tion through pro fes sional de vel op ment

Is ex pected to at tend work shops of shyfered in ed u ca tional set tings

Is usu ally not re quired to at tend fur shyther train ing but is en cour aged to im shyprove com mu ni ca tion skills and in tershyact with the deaf-blind com mu nity

Must re main im par tial at all times Wears ldquodif fer ent hatsrdquo (eg as in tershypreter guide fa cil i ta tor)

Re mains im par tial but has more flex ishybil ity than an in ter preter

Must keep all in for ma tion con fi den tial Is al lowed and ex pected to share per-ti nent in for ma tion with team memshybers (eg par ents teach ers re lated ser vice pro vid ers)

Is ex pected to keep in for ma tion con fi den tial

Is ex pected to keep a ldquopro fes sionalrdquo dis tance

Main tains an ed u ca t ional (teacher-student type) re la tion ship

Is ex pected to act in a ldquopro fes sionalrdquo man ner but may de velop per sonal re la tion ships

Acts as a con duit (does not ldquoteachrdquo and is not re spon si ble for en sur ingthat the deaf-blind in di vid ual learns what is be ing shared)

Is ac count able for de ci sion-making to en hance learn ing

Does not teach but does pro vide ac shycess to the en vi ron ment to em powerthe deaf-blind per son

Al ways keeps opin ions to himher self Em powers in di vid ual to make hisher own de ci sions

May pro vide feed backopin ions when asked

2

Fall 2001

References Alsop LBlaha Ramp Kloos E (2000)The intervener in early intervention and ed ucational settings for children and youth with de a fblind ness (N TAC Briefing Paper)Monm outh O R NTAC Tea ching Rese arch W estern Ore g on University Belote M (N ovem b er 1996)Effective use of interveners for stud ents who are d eaf-blind Paper presente d at the TASH Conference N ew Orle ans LA Dea f-Blind Service Center (N ovem b er 2000)Support service provider program g uid elines Se attle De a f-Blind Service Center Dea fb lind Services Minnesota (1998)Support service provid er philosophy and guid elines Minne apolis De a fb lind Services Minnesota Helen Keller N a tional Center (1999)SSP fact sheet Sand s Point N Y HKN C Re gistry of Interpreters for the De a f (Rev e d 1996)Cod e of ethics of the Reg istry of Interpreters for the Dea f Silver Spring MD RID Re gistry of Interpreters for the De a f (1997)Interpreting in educational settings (K ndash 12)(Stand a rd Practice Paper)Silver Spring MD RID Re gistry of Interpreters for the De a f (1997)Professional sig n lang uage interpreting (Stand a rd Practice Paper) Silver Spring MD RIDRe gistry of Interpreters for the De a f (1998)Generalist certification (CI and CT) exam ination inform ation bulletin Introduction to the national testing system (4th e d ) Silver Spring MD RID

Dea f-Blind Per spec tivesVolum e 9 Issue 1

Fa ll 2001

Ex ec u tive Ed i tor M an a ging Ed i tor Pro duc tion Ed i tor John Reim a n Pe g g y M a lloy Rand y Klum ph Te a ching Re search Te a ching R e search Te a ching Re se arch

Con sulting Ed i torsHarry An d er son Florid a School for the De a f a nd Blind Vic Bald win Teaching Re se arch Chig e e Cloning er U ni ver sity of V er m ont Mike Col lins Perkins School for the Blind June Downing Cal i for nia State Uni ver sity ndash N orthrid g e Bud Fre d e ricks Ed i tor Em er i tus Jay Gense Or e g on De part m ent of Ed u ca tion Ka re n Goehl In d i ana De a f-Blind Pro je ct Lori Goetz San Fran cisco State Uni ver sity Richelle H a m m e ttNew Mex ico Deaf-Blind Pro g ra m Gail Leslie Tea ching R e se arch Betsy McGinnity Perkins School for the Blind Barb ara A B McLetchie Boston Col le g e Kathy M cNulty Helen Keller N a tional Ce n ter N a ncy O rsquoDonnell Con sul tant Marianne Rig g io Pe rkins School for the Blind Art Roehrig Gallaud et Uni ver sity Rosa nne Silb erm a n Hunter Col le g e

Dea f-Blind Per spec tives con sid e rs all un so lic ited m a nu scripts and em ploys a re view pro cess to con sid er whether they will b e pub lished Som e m a nu scripts m ay re ceive anon y m ous peer re view Send b oth a printe d copy a nd a d isk copy (W in d ows for m a t) to

Dea f-Blind Per spec tives Te a ching Re search Di vi sion Ph (503) 838-8391345 N Monm outh Ave TTY (503) 838-8821 Monm outh O R 97361 wwwtrwouedutrdbp Fax (503) 838-8150

3

Fall 2001

A Support Service Provid erProgram in Utah

Cord ie W e e d There are not very m any d e a f-blind peo ple inUtah Com pare d to the num b er of peo ple who haveother d is a b il i ties we are a sm all g roup con sist ing of 150 ad ults Ser vices for a d ults who are d e a f-b lind are lim ited State wid e there is only one d e a f-b lindspe cia l ist and one part-tim e re ha b il i ta tion coun shyselor There are also in ter pret ers fund e d b y the statele g is la ture for d e a f-b lind peo ple who re ceive train shying at the Di vi sion of Ser vices for the Blind and Vi shysually Im paire d or who wish to at tend func tionsthere or at the Di vi sion of Ser vices for the De a f orHard of He ar ing These ser vices are very ap pre ci shyate d b ut they b a rely scrape the sur fa c e of the un m etne e ds of d e a f-b lind peo ple in Utah Re cently how ever a new ser vic e b e c am e avail a b le Be g in ning July 1 2001 the state le g is la ture fund e d asup port ser vice pro vid e r pro g ra m For two ye arstwo of m y b lind friend s and I went to the state c ap i shytal in Salt Lake City As m em b ers of the Le g is la tiveCo ali tion for Peo ple with Dis a b il ities we aske d thele g is la ture to fund a sup port ser vice pro vid er (SSP)pro g ra m for d e a f-b lind a d ults W e spent m anyhours talk ing to the leg is la tors W e also con tactedthe m b y phone a nd m ail a nd in spire d oth ers to calland write let ters W e let them know that we wantedto b e m ore in d e pend ent and to live in our own hom es W e aske d for fund ing for the SSP pro g ra mand we g ot it For m a ny d e a f-b lind peo ple life c an b e pretty em pty and lonely For ex am ple one m an who was b ornd e a f-b lind and who is in a nurs ing hom e has no wayto com m u ni cate with the sta ff there They d o notknow sig n la n g ua g e or how to spe a k to him There isno way for him to g et in volved in ac tiv i ties He justsits in a chair all d ay with a b so lute ly noth ing to d o There is a lso a wom an whose fa m ily wants to puther in a nurs ing hom e b e c ause they d o not want toc are for her They fe el that they can not cope with herne e dsIn stea d she chose to m ove into a hous ingcom plex for peo ple who are d is ab le d or have low in shycom es This wom an is un a b le to d o her own shop shyping or care for her per sonal b usi ness She c an notd rive her self any where She ne e d s help to b e a b le tolive in d e pend e ntly I know a m a n who was b orn d e a f a nd spent m ost ofhis years in the d e a f com m u nity As he g ot old er helost his sig ht and was un a b le to con tinue work ingHe is now to ta lly b lind Re cently he and his d e a fwife went to a so cia l a c tiv ity at the De a f Cen ter He

sat there and was b ore d b e c ause he could not se e thesig n lan g ua g e b e ing used a nd no one thoug ht to sig n in his hand s When he and his wife le fthe aske d hiswife if she ha d se en the m an who ha d b e en his d e ar shyest friend for m a ny years She told him that he ha db e e n sit ting next to him a ll eve ning His friend ha dnot said one word to him a nd the m a n was he art b ro shyken Som e d e a f-b lind peo ple live in their own hom es a ndare m ar rie d and have chil d ren Even thoug h theirfam i lies take c are of them they would still like tohave som e one take them out for so cial a c tiv i tiesaway from the fam ily to g ive them a chang e and tog ive the fa m ily a rest I am con sid ered d e a f-b lind m y self I live in m y ownhom e and have a hus b and and two chil d ren Myd aug h ter is m ar ried and has a b a b y My son isg rown b ut still lives at hom e Both of m y chil d reng rew up cop ing with m y d is a b il i ties I have UsherSyn d rom e I am se verely hard of he ar ing a nd havevery lit tle re m a in ing vi sion Even thoug h m y fa m ily has lived with m y in cre as shying d is a b il ity they g row im pa tient and frus tratedwhen I can not he ar or see som e thing I d o not al ways he ar ex actly what they are say ing so com m u ni ca shytion is d if fi cult and m is un d er stand ing s fre quentlyoc cur My hus b a nd has b e e n force d to ta ke on m orere spon si b il i ties b e c ause I c an not shop b y m y self ortravel alone on pub lic trans por ta tion These prob shylem s will only in cre ase as m y con d i tion wors ens I love to he ar what is b e ing said I love to b e a part of it all b ut I a m not b e c ause I can not he ar or se e I a mle ft out a lot and it is very lonely W hen ever I g etfrus trated I can not walk out or g o som e where towork it off I have to stay put un til it b uild s to thepoint where I ex plod e Som e tim es I fe el like I am in ab ox where I can not m ove or let out m y frus tra tionsIwas raise d to b e in d e pend ent and to ta ke c are of afa m ily as well as m y self I wa nt to con tinue to d othat I would like the SSP to help m e b e com e m ore in d e shypend e ntmdash to help m e shop a nd walk m y d og (apure bre d b e a g le ) to rea d m y m ail a nd other cor re shyspon d enc e to m e to b e m y eyes and e ars at so cial ac shytiv i ties and to take m e to m y ap point m ents Thiswould a lso help b y ta k ing som e pres sure off of m yfam ily m em b ers It m e ans so m uch to m e to b e a b leto d o m ore for m y self It m akes m e fe el m ore like ahu m an b e ing W e d e a f-b lind peo ple ne e d ser vice pro vid ers W ene e d help with d aily liv ing in or d er to b e in d e pend shyent It is so m uch che aper to have a sup port ser vicepro vid er tha n to b e put in a nurs ing hom e A sup shyport ser vice pro vid er can b e a friend to a d e a f-b lind

4

Fall 2001

per son and ca n m ake the per sonrsquos life b rig hterSSPrsquos as sis tanc e c an also m ake it e as ier for fa m ilym e m b e rs b y help ing to re lieve frus tra tion a ndstress I re ally hope this pro g ram will work well for m e foroth ers who are d e a f-b lind and for the chil d ren whowill soon b e com e a d ults I hope we will have thispro g ra m for m a ny ye ars and that it will b e suc cess shyful I want to m ake it work and help d e a f-b linda d ults b e in d e pend ent a nd live hap pily I fe el verystrong ly a b out this pro g ram

Valued O utcom es for Stud entsWho Are Deaf-Blind and TheirFam ilies Results of a Survey ofState Deaf-Blind Projects

Lori GoetzSan Francisco State University

N a m ita Jacob Jt Doctoral Prog ram San Francisco State

University - University of California Berkeley

N ora OrsquoFarrellSan Francisco Unifie d School District

Are schools e f fec tively m e et ing the e d u ca tionalne e ds of their spe cial e d u ca tion stu d ents An swersto this ques tion can b e pro vid ed from a va ri ety ofper spec tives A fe d eral law the Gov ern m ent Per for shym ance a nd Re sults Act of 1993 (GPRA) [Pu b ic LawN o 103-62] re quires fe d eral a g e n cies to im provepro g ra m e f fec tive ness and pub lic a c count a b il ity byfo cus ing on re sults ser vice qual ity and cus tom ersat is fa c tion It re quires the es ta b lish m ent of m e a sur shya b le g oals that c an b e re ported as part of the fe d eralb ud g et ary pro c ess In re sponse to GPRA the USDe part m ent of Ed u c a tionrsquos O f fice of Spe cia l Ed u ca shytion Pro g ra m s (O SEP) d e vel oped g uid e lines for spe shycial ed u ca tion pro g ram s that list ob jec tives andper for m ance in d i ca tors for these ob jec tives (O f ficeof Spe cial Ed u c a tion Pro g ram s 1999) The unique ne ss of the a b il i ties a nd ne e d s ofd e a f-b lind chil d ren poses chal leng e s for the cre ation of out com es a nd tools that m e a sure those out com esTo d e ter m ine ways in which the O SEP g uid e linescould b e m a d e m ore m e an ing ful and re flec tive ofthe spe cific e d u c a tiona l ne e d s a nd g oa ls ofd e a f-b lind chil d ren we d e vel ope d a ques tion nairefor state d e a f-b lind pro ject per son nel It aske d re shyspon d ents what they con sid ere d to b e va l ued out shycom es for d e a f-b lind stu d ents their fa m i lies and

5

state and lo ca l sys tem s that pro vid e ser vices W e d e shyfine d a val ue d out com e as a re sult of the school ingpro cess that is b oth in d i vid u a l ized and per ceive d aspos i tive and d e sir a b le The d e vel op m ent of so cialin ter ac tion skills in g re et ing pe ers or a d vo ca cy skills in pro m ot ing in clu sive school ing to a PTA g roup are ex a m ples The ques tion naire also asked re spon shyd ents to id en tify tools and strat e g ies used to m e a shysure these out com es

Results of the Questionnaire In 1998 the ques tion naire was sent to the fifty ex istshying state d e af-b lind pro je cts across the coun tryThese pro je cts are fe d er ally fund e d train ing a ndtech ni cal as sis tanc e en ti ties serv ing schools a g e n shycies and fa m i lies of d e a f-b lind chil d ren and youthPro ject sta ff m e m b ers were in a po si tion to id en tifyout com es that a d d ress the d if fer ent per spec tives ofg roups and in d i vid u a ls in volve d in the lives of chil shyd ren and youth who are d e a f-b lind Twenty-nine ofthe fifty ques tion naires were re turne d a re sponserate of 58 per cent The ques tions were b rie f and open-end ed and d idnot re quire re spon d ents to use a spe cific for m at An shyswers rang e d from sin g le word s phrases and num shyb ere d lists to sen tenc es and para g raphs Given thisd i ver sity in for m at the an swers were a n a lyzed bytwo in d e pend e nt rat ers a nd sum m a rize d in cat e g o shyries of val ue d out com es (se e ta ble ) The c at e g o riesen a b le d a suc cinct syn the sis that hig h lig hte d m a jorfo cus ar e as for stu d ents fa m i lies and sys tem s The rat ers d e vel oped ten c at e g o ries of val ue d out shycom es for stu d ents eig ht for fam i lies a nd five forsys tem -level en ti ties In a d d i tion to id en ti fy ing spe shycific val ued out com es sev era l state pro jects notedthat id e ally val ued out com es for stu d ents and fa m shyi lies should b e d e vel ope d on an in d i vid ual b a sisO th ers com m e nte d that va l ue d out com e s ford e a f-b lind chil d ren and their fa m i lies are no d if fer shyent from those for chil d ren with out d is a b il i ties In ea ch of the three fo cus ar e as (stu d ent fam ily sys shytem ) cer tain re sponses were m en tione d re pe at e d lyb y sev eral re spon d ents Al thoug h the num b e r of re shysponses in e a ch c at e g ory is b ut one in d i ca tor of im shypor tance it is an in d i ca tion of the va l ue d out com esthat are in the fore front of the re spon d e ntsrsquo con shyscious ness The id e as ex presse d m ost of ten in e a chc at e g ory are d is cussed fur ther in this se c tion Growing con cern with the va lue and m e a n ing ofava il a b le in ter ven tions and ser vices is re flecte d inall of the re sponses M ean ing ful par tic i pa tion of thed e a f-b lind in d i vid ual at hom e school and in thecom m u nity is a re cur ring them e

Fall 2001

Stu d e nt O ut com es ldquoCom m u ni c a tion skillsrdquo a ndldquoso cia l skills and friend shipsrdquo were m en tione d re shype at ed ly as va l ued g oa ls for stu d ents Sev eral re shyspon d e nts stre sse d the im por ta nc e ofcom m u ni c a tion skills that are func tional a nd worka cross d if fer ent en vi ron m ents (eg b oth at hom e and at school) Som e re spon d ents stresse d the im shypor tance of the qual ity of re la tion ships They notedthat there is a d if fer ence b e tween re la tion ships withpaid sta ff and those that oc cur with friend s and fa m shyily and they em pha sized the need to en sure that re shyla tion ships are m u tual a nd long last ing Ef fec tive com m u ni ca tion and g ood so cial skills areim por tant el e m ents for suc cess in school en vi ron shym ents The stress on func tiona l com m u ni c a tion a ndm e a n ing ful friend ships re flects the out com es-b ased plan ning em pha sized in the 1997 re authorization ofthe In d i vid uals with Dis a b il ities Ed u ca tion Act(IDEA) There has b e e n con sid er a b le prog ress in thed e vel op m ent a nd re fine m ent of in ter ven tions d e shysig ned to im prove the so cial in ter ac tion a nd com shym u ni c a tion of stu d ents with d is a b il i ties in reg u lare d u ca tion set ting s (Hunt Farron-Davis W renn Hirose-Hata e amp Goetz 1997 O d om McConnell ampMcEvoy 1992 Strain amp Kohler 1995) Fa m ily O ut com es The a va il a b il ity of fa m shyily-specific train ing was the m ost fre quently m en shytioned out com e c at e g ory for fa m i lies Re spon d entsid en ti fie d a ne e d for train ing in the fol low ing ar e as spe cific skills to sup port the child rsquos d e ve l op m ent such as a d a pt ing e n vi ron m e nts and m a te ri alsa nd le arn ing com m u ni ca tion skills a nd tech shyniques

aware ness of avail a b le re sources a d vo cacy skills Sys tem O ut com es Sys tem out com es d e scrib e re shysults that a f fect the struc tures a nd a c tiv i ties of or g a shyni za tions ra ther tha n in d i vid u a ls Re sponsesem pha siz ing col la b o ra tive pla n ning for or g a ni za shytions were the m ost com m only id en ti fie d val uedout com es The in volve m e nt of par ents and chil d renin a col la b o ra tive pla n ning pro cess fos ters sm oothtran si tions and the a chieve m ent of in d e pend encefor stu d ents Pa ren tal in volve m ent in ed u ca tionalpro gra m a nd tra n si tion pla n ning has a lso b e e nfound to pos i tively a f fe ct stu d entsrsquo a c a d e m ic out shycom es (M orning star Turnb ull amp Turnb ull 1995-1996 Everson amp Moon 1987 Sales MetzlerEverson amp Moon 1991) In fre quently Re ported Re sponses Equally in ter shyest ing a nd wor thy of fur ther re se arch are the c at e g o shyrie s tha t re c e ive d the le a st a t te n tion fromre spon d ents Only a sm a ll num b er of re spon d entsm en tione d a c a d em ic skills a nd se lf-a d voca cy as val shy

ued out com es for stu d e nts Only a few m en tionedem pow er m ent as an im por tant out com e for fam i lies or for in clu sion as a sys tem -level out com e Em pow shyer m ent and in clu sion have re ceive d a g re at d e a l ofat ten tion in the g e n eral lit er a ture on spe cial e d u ca shytion (Dunst Trivette amp Deal 1994 Fa lvey 1995) Itis sur pris ing that they re ceive d such sc ant at ten tionhere

Cate gories of Valued O utcom es Stu d ent O ut com es N um b er of Re sponsesSo cial skills and frie nd ship 25In clu sion into com m u nity 16Com m u ni c a tion skills 16Se lf-help a nd in d e pe nd e nt liv ing skills 15

W orkCa re er 14

He alth vi sion and hear ing 12Rec re ation and lei sure 8

Tran si tion 6

Ac a d e m ic skills 5

Se lf-ad voc a cy 4

To tal Stu d ent Re sponses 121

Fam ily O ut com es N um b er of Re sponses Fa m ily-specific train ing 20V alue d m e m b e r of fa m ily a nd com m u nity 15

Re sources for a d ult in d e pend ence 14

Re sources for fam i lies 12Fa m ily sta b il ity 8

Con nec tions for fa m i lies 8

Fa m ilypro fes sional col la b o ra tion 6

Em pow er m ent of fa m i lies 3

To tal Fam ily Re sponses 86

Sys tem O ut com es Num b er of Re sponses Col lab o ra tive plan ning 30Sta ff avail a b il ity and train ing 18

Re sources for com m u nity in clu sion 17

IEPIFSP qual ity 13Ra ng e of e d u ca tiona l pla c e m ent op tions 10

In clu sion 5

To tal Sys tem O ut com es 93

6

Fall 2001

Assessm ent IssuesThe IDEA Am e nd m ents of 1997 pla c e g re at em pha shysis on m e a sur ing re sults throug h im prove d a c shycount a b il ity and d ata col lec tion ef forts There is are newed re li ance on the use of as sess m ents to m e a shysure the per for m anc e of stu d ents and their prog ressto ward m e et ing id en ti fie d stan d ard s In re sponsesto our ques tion naire we id en ti fie d a to ta l of eig h shyteen as sess m ent tools and m e a sures in clud ing sev shyera l cur ric ula a nd in for m a l m e th od s of d a tacol lec tion such as case stud ies and in ter views Notool was m en tione d with suf fi cie nt fre quency to b erep re sen ta tive of the re sponses

Conclusion The OSEP g uid e lines d e scrib e ob jec tives in g en eralterm s such as ldquoim prove ed u ca tiona l re sults for chil shyd ren with d is ab il i tiesrdquoThe re sults of the ques tion shynaire re porte d here re flect how state d e a f-b lindpro ject per son nel in ter prete d these ob je c tives interm s of a c tual prac tice with stu d ents fa m i lies andser vice pro vid ers For ex am ple d e vel op m ent ofcom m u ni c a tion skills and so cial skills and friend shyship em erg e d a s key el e m ents for the ob jec tive of im shyprov ing e d u ca tiona l re sults There are a cou ple of lim i ta tions to the re sults of thisstud y First the 58 per cent re sponse rate lim its theg en er a l ity of the find ings A fur ther lim i ta tion is that the ques tions aske d were very b rie f A m ore d e tailed sur vey or the use of fo cus g roups would a d d to thed epth of the in for m a tion that could b e ob taine d The d e vel op m ent of val ue d out com es for stu d entsfam i lies and sys tem s ca n have d i rect im pli ca tionsfor the eval u a tion of pro g ra ms serv ing stu d entswho are d e a f-b lind a nd their fa m i lies Pro g ram sser vic es and tech ni cal as sis tanc e e f forts that arecon sis tent with the val ued out com es re ported herewill streng then the alig n m ent b e tween ac tual prac shytice and the goa ls of those who as sist and sup portpra c ti tio ners work ing with d e a f-b lind chil d renFur ther stud y a nd d e vel op m ent of val ue d out com es for d e a f-b lind stu d ents a nd the cre ation a nd use oftools to m e a sure prog ress to ward s e d u c a tionalg oals should b e a pri or ity for the field

References Dunst C J Trivette C M amp Deal A G (Ed s) (1994)Supporting a nd strengthening fa m ilies Method sstrateg ies and practices Brookline MA Brookline Books Everson J M amp Moon S M (1987) Transition servicesfor young a d ults with severe d isa b ilities Defining

7

professional and parental roles and responsib ilitiesJournal of the Association of Persons with SevereHand icaps 12 (2) 87-95 Falvey M A (Ed ) (1995)Inclusive and heterog eneousschooling Assessm ent curriculum and instructionBa ltim ore Paul H Brookes Hunt P Farron-Davis F W renn M Hirose-Hata e A amp Goe tz L (1997) Prom oting inte ra c tivepartnerships in inclusive ed ucationa l setting s Journalof the Association of Persons with Severe Hand icaps 22 (3)127-37 Morning star M E Turnb ull A P amp Turnbull H R(1995-1996) W hat d o stud ents with d isa b ilities tell usa b out the im portance of fa m ily involvem ent in thetra nsition from school to a d ult life Exceptional Children 62 (3) 249-60 O d om S L McConnell S R amp McEvoy M A (Ed s)(1992) Social com petence of young child ren withdisabilities Baltim ore Paul H Brookes O ffice of Special Ed uc ation Prog ram s US Departm ent of Ed uc a tion (1999)FY 2000 Annua l Prog ra mPerform a nce Plans und er GPRA Ind ivid uals withDisa bilities Education Act (IDEA) Sub m itted to Cong ress Fe bruary 25 1999 Sales P Metzler H M Everson J M amp Moon M S (1991) Quality ind ica tors of succ essful vocationaltra nsition prog ra m s Journa l of Voc a tiona l Rehabilitation 1 (4) 47-63 Strain P S amp Kohler F W (1995) Ana lyzingpre d ictors of d a ily social skill perform a nc e Behavior Disord ers 21 (1) 79-88

Helping Children Cope WithGrief A Discussion of Options for Parents of Deaf-Blind

Child ren Compile d b y

N a ncy OrsquoDonnellHelen Keller N ational Center

W hen it co m es to par entchild d i a log ues thereare few top ics that cause as m uch anx i ety as sex a ndd e ath W hen those top ics are con sid ere d in thefram e work of d is cuss ing them with chil d ren whoare d e a f-b lind m a ny fam i lies a nd pro fes sion als arele ft spee ch less Early this ye ar I re c eived an e-m a il from a m other inN ew Ze a land who was look ing for g uid a nc e on how to help her son g rieve the loss of his g ra nd fa ther

Hi Nancy

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

References Alsop LBlaha Ramp Kloos E (2000)The intervener in early intervention and ed ucational settings for children and youth with de a fblind ness (N TAC Briefing Paper)Monm outh O R NTAC Tea ching Rese arch W estern Ore g on University Belote M (N ovem b er 1996)Effective use of interveners for stud ents who are d eaf-blind Paper presente d at the TASH Conference N ew Orle ans LA Dea f-Blind Service Center (N ovem b er 2000)Support service provider program g uid elines Se attle De a f-Blind Service Center Dea fb lind Services Minnesota (1998)Support service provid er philosophy and guid elines Minne apolis De a fb lind Services Minnesota Helen Keller N a tional Center (1999)SSP fact sheet Sand s Point N Y HKN C Re gistry of Interpreters for the De a f (Rev e d 1996)Cod e of ethics of the Reg istry of Interpreters for the Dea f Silver Spring MD RID Re gistry of Interpreters for the De a f (1997)Interpreting in educational settings (K ndash 12)(Stand a rd Practice Paper)Silver Spring MD RID Re gistry of Interpreters for the De a f (1997)Professional sig n lang uage interpreting (Stand a rd Practice Paper) Silver Spring MD RIDRe gistry of Interpreters for the De a f (1998)Generalist certification (CI and CT) exam ination inform ation bulletin Introduction to the national testing system (4th e d ) Silver Spring MD RID

Dea f-Blind Per spec tivesVolum e 9 Issue 1

Fa ll 2001

Ex ec u tive Ed i tor M an a ging Ed i tor Pro duc tion Ed i tor John Reim a n Pe g g y M a lloy Rand y Klum ph Te a ching Re search Te a ching R e search Te a ching Re se arch

Con sulting Ed i torsHarry An d er son Florid a School for the De a f a nd Blind Vic Bald win Teaching Re se arch Chig e e Cloning er U ni ver sity of V er m ont Mike Col lins Perkins School for the Blind June Downing Cal i for nia State Uni ver sity ndash N orthrid g e Bud Fre d e ricks Ed i tor Em er i tus Jay Gense Or e g on De part m ent of Ed u ca tion Ka re n Goehl In d i ana De a f-Blind Pro je ct Lori Goetz San Fran cisco State Uni ver sity Richelle H a m m e ttNew Mex ico Deaf-Blind Pro g ra m Gail Leslie Tea ching R e se arch Betsy McGinnity Perkins School for the Blind Barb ara A B McLetchie Boston Col le g e Kathy M cNulty Helen Keller N a tional Ce n ter N a ncy O rsquoDonnell Con sul tant Marianne Rig g io Pe rkins School for the Blind Art Roehrig Gallaud et Uni ver sity Rosa nne Silb erm a n Hunter Col le g e

Dea f-Blind Per spec tives con sid e rs all un so lic ited m a nu scripts and em ploys a re view pro cess to con sid er whether they will b e pub lished Som e m a nu scripts m ay re ceive anon y m ous peer re view Send b oth a printe d copy a nd a d isk copy (W in d ows for m a t) to

Dea f-Blind Per spec tives Te a ching Re search Di vi sion Ph (503) 838-8391345 N Monm outh Ave TTY (503) 838-8821 Monm outh O R 97361 wwwtrwouedutrdbp Fax (503) 838-8150

3

Fall 2001

A Support Service Provid erProgram in Utah

Cord ie W e e d There are not very m any d e a f-blind peo ple inUtah Com pare d to the num b er of peo ple who haveother d is a b il i ties we are a sm all g roup con sist ing of 150 ad ults Ser vices for a d ults who are d e a f-b lind are lim ited State wid e there is only one d e a f-b lindspe cia l ist and one part-tim e re ha b il i ta tion coun shyselor There are also in ter pret ers fund e d b y the statele g is la ture for d e a f-b lind peo ple who re ceive train shying at the Di vi sion of Ser vices for the Blind and Vi shysually Im paire d or who wish to at tend func tionsthere or at the Di vi sion of Ser vices for the De a f orHard of He ar ing These ser vices are very ap pre ci shyate d b ut they b a rely scrape the sur fa c e of the un m etne e ds of d e a f-b lind peo ple in Utah Re cently how ever a new ser vic e b e c am e avail a b le Be g in ning July 1 2001 the state le g is la ture fund e d asup port ser vice pro vid e r pro g ra m For two ye arstwo of m y b lind friend s and I went to the state c ap i shytal in Salt Lake City As m em b ers of the Le g is la tiveCo ali tion for Peo ple with Dis a b il ities we aske d thele g is la ture to fund a sup port ser vice pro vid er (SSP)pro g ra m for d e a f-b lind a d ults W e spent m anyhours talk ing to the leg is la tors W e also con tactedthe m b y phone a nd m ail a nd in spire d oth ers to calland write let ters W e let them know that we wantedto b e m ore in d e pend ent and to live in our own hom es W e aske d for fund ing for the SSP pro g ra mand we g ot it For m a ny d e a f-b lind peo ple life c an b e pretty em pty and lonely For ex am ple one m an who was b ornd e a f-b lind and who is in a nurs ing hom e has no wayto com m u ni cate with the sta ff there They d o notknow sig n la n g ua g e or how to spe a k to him There isno way for him to g et in volved in ac tiv i ties He justsits in a chair all d ay with a b so lute ly noth ing to d o There is a lso a wom an whose fa m ily wants to puther in a nurs ing hom e b e c ause they d o not want toc are for her They fe el that they can not cope with herne e dsIn stea d she chose to m ove into a hous ingcom plex for peo ple who are d is ab le d or have low in shycom es This wom an is un a b le to d o her own shop shyping or care for her per sonal b usi ness She c an notd rive her self any where She ne e d s help to b e a b le tolive in d e pend e ntly I know a m a n who was b orn d e a f a nd spent m ost ofhis years in the d e a f com m u nity As he g ot old er helost his sig ht and was un a b le to con tinue work ingHe is now to ta lly b lind Re cently he and his d e a fwife went to a so cia l a c tiv ity at the De a f Cen ter He

sat there and was b ore d b e c ause he could not se e thesig n lan g ua g e b e ing used a nd no one thoug ht to sig n in his hand s When he and his wife le fthe aske d hiswife if she ha d se en the m an who ha d b e en his d e ar shyest friend for m a ny years She told him that he ha db e e n sit ting next to him a ll eve ning His friend ha dnot said one word to him a nd the m a n was he art b ro shyken Som e d e a f-b lind peo ple live in their own hom es a ndare m ar rie d and have chil d ren Even thoug h theirfam i lies take c are of them they would still like tohave som e one take them out for so cial a c tiv i tiesaway from the fam ily to g ive them a chang e and tog ive the fa m ily a rest I am con sid ered d e a f-b lind m y self I live in m y ownhom e and have a hus b and and two chil d ren Myd aug h ter is m ar ried and has a b a b y My son isg rown b ut still lives at hom e Both of m y chil d reng rew up cop ing with m y d is a b il i ties I have UsherSyn d rom e I am se verely hard of he ar ing a nd havevery lit tle re m a in ing vi sion Even thoug h m y fa m ily has lived with m y in cre as shying d is a b il ity they g row im pa tient and frus tratedwhen I can not he ar or see som e thing I d o not al ways he ar ex actly what they are say ing so com m u ni ca shytion is d if fi cult and m is un d er stand ing s fre quentlyoc cur My hus b a nd has b e e n force d to ta ke on m orere spon si b il i ties b e c ause I c an not shop b y m y self ortravel alone on pub lic trans por ta tion These prob shylem s will only in cre ase as m y con d i tion wors ens I love to he ar what is b e ing said I love to b e a part of it all b ut I a m not b e c ause I can not he ar or se e I a mle ft out a lot and it is very lonely W hen ever I g etfrus trated I can not walk out or g o som e where towork it off I have to stay put un til it b uild s to thepoint where I ex plod e Som e tim es I fe el like I am in ab ox where I can not m ove or let out m y frus tra tionsIwas raise d to b e in d e pend ent and to ta ke c are of afa m ily as well as m y self I wa nt to con tinue to d othat I would like the SSP to help m e b e com e m ore in d e shypend e ntmdash to help m e shop a nd walk m y d og (apure bre d b e a g le ) to rea d m y m ail a nd other cor re shyspon d enc e to m e to b e m y eyes and e ars at so cial ac shytiv i ties and to take m e to m y ap point m ents Thiswould a lso help b y ta k ing som e pres sure off of m yfam ily m em b ers It m e ans so m uch to m e to b e a b leto d o m ore for m y self It m akes m e fe el m ore like ahu m an b e ing W e d e a f-b lind peo ple ne e d ser vice pro vid ers W ene e d help with d aily liv ing in or d er to b e in d e pend shyent It is so m uch che aper to have a sup port ser vicepro vid er tha n to b e put in a nurs ing hom e A sup shyport ser vice pro vid er can b e a friend to a d e a f-b lind

4

Fall 2001

per son and ca n m ake the per sonrsquos life b rig hterSSPrsquos as sis tanc e c an also m ake it e as ier for fa m ilym e m b e rs b y help ing to re lieve frus tra tion a ndstress I re ally hope this pro g ram will work well for m e foroth ers who are d e a f-b lind and for the chil d ren whowill soon b e com e a d ults I hope we will have thispro g ra m for m a ny ye ars and that it will b e suc cess shyful I want to m ake it work and help d e a f-b linda d ults b e in d e pend ent a nd live hap pily I fe el verystrong ly a b out this pro g ram

Valued O utcom es for Stud entsWho Are Deaf-Blind and TheirFam ilies Results of a Survey ofState Deaf-Blind Projects

Lori GoetzSan Francisco State University

N a m ita Jacob Jt Doctoral Prog ram San Francisco State

University - University of California Berkeley

N ora OrsquoFarrellSan Francisco Unifie d School District

Are schools e f fec tively m e et ing the e d u ca tionalne e ds of their spe cial e d u ca tion stu d ents An swersto this ques tion can b e pro vid ed from a va ri ety ofper spec tives A fe d eral law the Gov ern m ent Per for shym ance a nd Re sults Act of 1993 (GPRA) [Pu b ic LawN o 103-62] re quires fe d eral a g e n cies to im provepro g ra m e f fec tive ness and pub lic a c count a b il ity byfo cus ing on re sults ser vice qual ity and cus tom ersat is fa c tion It re quires the es ta b lish m ent of m e a sur shya b le g oals that c an b e re ported as part of the fe d eralb ud g et ary pro c ess In re sponse to GPRA the USDe part m ent of Ed u c a tionrsquos O f fice of Spe cia l Ed u ca shytion Pro g ra m s (O SEP) d e vel oped g uid e lines for spe shycial ed u ca tion pro g ram s that list ob jec tives andper for m ance in d i ca tors for these ob jec tives (O f ficeof Spe cial Ed u c a tion Pro g ram s 1999) The unique ne ss of the a b il i ties a nd ne e d s ofd e a f-b lind chil d ren poses chal leng e s for the cre ation of out com es a nd tools that m e a sure those out com esTo d e ter m ine ways in which the O SEP g uid e linescould b e m a d e m ore m e an ing ful and re flec tive ofthe spe cific e d u c a tiona l ne e d s a nd g oa ls ofd e a f-b lind chil d ren we d e vel ope d a ques tion nairefor state d e a f-b lind pro ject per son nel It aske d re shyspon d ents what they con sid ere d to b e va l ued out shycom es for d e a f-b lind stu d ents their fa m i lies and

5

state and lo ca l sys tem s that pro vid e ser vices W e d e shyfine d a val ue d out com e as a re sult of the school ingpro cess that is b oth in d i vid u a l ized and per ceive d aspos i tive and d e sir a b le The d e vel op m ent of so cialin ter ac tion skills in g re et ing pe ers or a d vo ca cy skills in pro m ot ing in clu sive school ing to a PTA g roup are ex a m ples The ques tion naire also asked re spon shyd ents to id en tify tools and strat e g ies used to m e a shysure these out com es

Results of the Questionnaire In 1998 the ques tion naire was sent to the fifty ex istshying state d e af-b lind pro je cts across the coun tryThese pro je cts are fe d er ally fund e d train ing a ndtech ni cal as sis tanc e en ti ties serv ing schools a g e n shycies and fa m i lies of d e a f-b lind chil d ren and youthPro ject sta ff m e m b ers were in a po si tion to id en tifyout com es that a d d ress the d if fer ent per spec tives ofg roups and in d i vid u a ls in volve d in the lives of chil shyd ren and youth who are d e a f-b lind Twenty-nine ofthe fifty ques tion naires were re turne d a re sponserate of 58 per cent The ques tions were b rie f and open-end ed and d idnot re quire re spon d ents to use a spe cific for m at An shyswers rang e d from sin g le word s phrases and num shyb ere d lists to sen tenc es and para g raphs Given thisd i ver sity in for m at the an swers were a n a lyzed bytwo in d e pend e nt rat ers a nd sum m a rize d in cat e g o shyries of val ue d out com es (se e ta ble ) The c at e g o riesen a b le d a suc cinct syn the sis that hig h lig hte d m a jorfo cus ar e as for stu d ents fa m i lies and sys tem s The rat ers d e vel oped ten c at e g o ries of val ue d out shycom es for stu d ents eig ht for fam i lies a nd five forsys tem -level en ti ties In a d d i tion to id en ti fy ing spe shycific val ued out com es sev era l state pro jects notedthat id e ally val ued out com es for stu d ents and fa m shyi lies should b e d e vel ope d on an in d i vid ual b a sisO th ers com m e nte d that va l ue d out com e s ford e a f-b lind chil d ren and their fa m i lies are no d if fer shyent from those for chil d ren with out d is a b il i ties In ea ch of the three fo cus ar e as (stu d ent fam ily sys shytem ) cer tain re sponses were m en tione d re pe at e d lyb y sev eral re spon d ents Al thoug h the num b e r of re shysponses in e a ch c at e g ory is b ut one in d i ca tor of im shypor tance it is an in d i ca tion of the va l ue d out com esthat are in the fore front of the re spon d e ntsrsquo con shyscious ness The id e as ex presse d m ost of ten in e a chc at e g ory are d is cussed fur ther in this se c tion Growing con cern with the va lue and m e a n ing ofava il a b le in ter ven tions and ser vices is re flecte d inall of the re sponses M ean ing ful par tic i pa tion of thed e a f-b lind in d i vid ual at hom e school and in thecom m u nity is a re cur ring them e

Fall 2001

Stu d e nt O ut com es ldquoCom m u ni c a tion skillsrdquo a ndldquoso cia l skills and friend shipsrdquo were m en tione d re shype at ed ly as va l ued g oa ls for stu d ents Sev eral re shyspon d e nts stre sse d the im por ta nc e ofcom m u ni c a tion skills that are func tional a nd worka cross d if fer ent en vi ron m ents (eg b oth at hom e and at school) Som e re spon d ents stresse d the im shypor tance of the qual ity of re la tion ships They notedthat there is a d if fer ence b e tween re la tion ships withpaid sta ff and those that oc cur with friend s and fa m shyily and they em pha sized the need to en sure that re shyla tion ships are m u tual a nd long last ing Ef fec tive com m u ni ca tion and g ood so cial skills areim por tant el e m ents for suc cess in school en vi ron shym ents The stress on func tiona l com m u ni c a tion a ndm e a n ing ful friend ships re flects the out com es-b ased plan ning em pha sized in the 1997 re authorization ofthe In d i vid uals with Dis a b il ities Ed u ca tion Act(IDEA) There has b e e n con sid er a b le prog ress in thed e vel op m ent a nd re fine m ent of in ter ven tions d e shysig ned to im prove the so cial in ter ac tion a nd com shym u ni c a tion of stu d ents with d is a b il i ties in reg u lare d u ca tion set ting s (Hunt Farron-Davis W renn Hirose-Hata e amp Goetz 1997 O d om McConnell ampMcEvoy 1992 Strain amp Kohler 1995) Fa m ily O ut com es The a va il a b il ity of fa m shyily-specific train ing was the m ost fre quently m en shytioned out com e c at e g ory for fa m i lies Re spon d entsid en ti fie d a ne e d for train ing in the fol low ing ar e as spe cific skills to sup port the child rsquos d e ve l op m ent such as a d a pt ing e n vi ron m e nts and m a te ri alsa nd le arn ing com m u ni ca tion skills a nd tech shyniques

aware ness of avail a b le re sources a d vo cacy skills Sys tem O ut com es Sys tem out com es d e scrib e re shysults that a f fect the struc tures a nd a c tiv i ties of or g a shyni za tions ra ther tha n in d i vid u a ls Re sponsesem pha siz ing col la b o ra tive pla n ning for or g a ni za shytions were the m ost com m only id en ti fie d val uedout com es The in volve m e nt of par ents and chil d renin a col la b o ra tive pla n ning pro cess fos ters sm oothtran si tions and the a chieve m ent of in d e pend encefor stu d ents Pa ren tal in volve m ent in ed u ca tionalpro gra m a nd tra n si tion pla n ning has a lso b e e nfound to pos i tively a f fe ct stu d entsrsquo a c a d e m ic out shycom es (M orning star Turnb ull amp Turnb ull 1995-1996 Everson amp Moon 1987 Sales MetzlerEverson amp Moon 1991) In fre quently Re ported Re sponses Equally in ter shyest ing a nd wor thy of fur ther re se arch are the c at e g o shyrie s tha t re c e ive d the le a st a t te n tion fromre spon d ents Only a sm a ll num b er of re spon d entsm en tione d a c a d em ic skills a nd se lf-a d voca cy as val shy

ued out com es for stu d e nts Only a few m en tionedem pow er m ent as an im por tant out com e for fam i lies or for in clu sion as a sys tem -level out com e Em pow shyer m ent and in clu sion have re ceive d a g re at d e a l ofat ten tion in the g e n eral lit er a ture on spe cial e d u ca shytion (Dunst Trivette amp Deal 1994 Fa lvey 1995) Itis sur pris ing that they re ceive d such sc ant at ten tionhere

Cate gories of Valued O utcom es Stu d ent O ut com es N um b er of Re sponsesSo cial skills and frie nd ship 25In clu sion into com m u nity 16Com m u ni c a tion skills 16Se lf-help a nd in d e pe nd e nt liv ing skills 15

W orkCa re er 14

He alth vi sion and hear ing 12Rec re ation and lei sure 8

Tran si tion 6

Ac a d e m ic skills 5

Se lf-ad voc a cy 4

To tal Stu d ent Re sponses 121

Fam ily O ut com es N um b er of Re sponses Fa m ily-specific train ing 20V alue d m e m b e r of fa m ily a nd com m u nity 15

Re sources for a d ult in d e pend ence 14

Re sources for fam i lies 12Fa m ily sta b il ity 8

Con nec tions for fa m i lies 8

Fa m ilypro fes sional col la b o ra tion 6

Em pow er m ent of fa m i lies 3

To tal Fam ily Re sponses 86

Sys tem O ut com es Num b er of Re sponses Col lab o ra tive plan ning 30Sta ff avail a b il ity and train ing 18

Re sources for com m u nity in clu sion 17

IEPIFSP qual ity 13Ra ng e of e d u ca tiona l pla c e m ent op tions 10

In clu sion 5

To tal Sys tem O ut com es 93

6

Fall 2001

Assessm ent IssuesThe IDEA Am e nd m ents of 1997 pla c e g re at em pha shysis on m e a sur ing re sults throug h im prove d a c shycount a b il ity and d ata col lec tion ef forts There is are newed re li ance on the use of as sess m ents to m e a shysure the per for m anc e of stu d ents and their prog ressto ward m e et ing id en ti fie d stan d ard s In re sponsesto our ques tion naire we id en ti fie d a to ta l of eig h shyteen as sess m ent tools and m e a sures in clud ing sev shyera l cur ric ula a nd in for m a l m e th od s of d a tacol lec tion such as case stud ies and in ter views Notool was m en tione d with suf fi cie nt fre quency to b erep re sen ta tive of the re sponses

Conclusion The OSEP g uid e lines d e scrib e ob jec tives in g en eralterm s such as ldquoim prove ed u ca tiona l re sults for chil shyd ren with d is ab il i tiesrdquoThe re sults of the ques tion shynaire re porte d here re flect how state d e a f-b lindpro ject per son nel in ter prete d these ob je c tives interm s of a c tual prac tice with stu d ents fa m i lies andser vice pro vid ers For ex am ple d e vel op m ent ofcom m u ni c a tion skills and so cial skills and friend shyship em erg e d a s key el e m ents for the ob jec tive of im shyprov ing e d u ca tiona l re sults There are a cou ple of lim i ta tions to the re sults of thisstud y First the 58 per cent re sponse rate lim its theg en er a l ity of the find ings A fur ther lim i ta tion is that the ques tions aske d were very b rie f A m ore d e tailed sur vey or the use of fo cus g roups would a d d to thed epth of the in for m a tion that could b e ob taine d The d e vel op m ent of val ue d out com es for stu d entsfam i lies and sys tem s ca n have d i rect im pli ca tionsfor the eval u a tion of pro g ra ms serv ing stu d entswho are d e a f-b lind a nd their fa m i lies Pro g ram sser vic es and tech ni cal as sis tanc e e f forts that arecon sis tent with the val ued out com es re ported herewill streng then the alig n m ent b e tween ac tual prac shytice and the goa ls of those who as sist and sup portpra c ti tio ners work ing with d e a f-b lind chil d renFur ther stud y a nd d e vel op m ent of val ue d out com es for d e a f-b lind stu d ents a nd the cre ation a nd use oftools to m e a sure prog ress to ward s e d u c a tionalg oals should b e a pri or ity for the field

References Dunst C J Trivette C M amp Deal A G (Ed s) (1994)Supporting a nd strengthening fa m ilies Method sstrateg ies and practices Brookline MA Brookline Books Everson J M amp Moon S M (1987) Transition servicesfor young a d ults with severe d isa b ilities Defining

7

professional and parental roles and responsib ilitiesJournal of the Association of Persons with SevereHand icaps 12 (2) 87-95 Falvey M A (Ed ) (1995)Inclusive and heterog eneousschooling Assessm ent curriculum and instructionBa ltim ore Paul H Brookes Hunt P Farron-Davis F W renn M Hirose-Hata e A amp Goe tz L (1997) Prom oting inte ra c tivepartnerships in inclusive ed ucationa l setting s Journalof the Association of Persons with Severe Hand icaps 22 (3)127-37 Morning star M E Turnb ull A P amp Turnbull H R(1995-1996) W hat d o stud ents with d isa b ilities tell usa b out the im portance of fa m ily involvem ent in thetra nsition from school to a d ult life Exceptional Children 62 (3) 249-60 O d om S L McConnell S R amp McEvoy M A (Ed s)(1992) Social com petence of young child ren withdisabilities Baltim ore Paul H Brookes O ffice of Special Ed uc ation Prog ram s US Departm ent of Ed uc a tion (1999)FY 2000 Annua l Prog ra mPerform a nce Plans und er GPRA Ind ivid uals withDisa bilities Education Act (IDEA) Sub m itted to Cong ress Fe bruary 25 1999 Sales P Metzler H M Everson J M amp Moon M S (1991) Quality ind ica tors of succ essful vocationaltra nsition prog ra m s Journa l of Voc a tiona l Rehabilitation 1 (4) 47-63 Strain P S amp Kohler F W (1995) Ana lyzingpre d ictors of d a ily social skill perform a nc e Behavior Disord ers 21 (1) 79-88

Helping Children Cope WithGrief A Discussion of Options for Parents of Deaf-Blind

Child ren Compile d b y

N a ncy OrsquoDonnellHelen Keller N ational Center

W hen it co m es to par entchild d i a log ues thereare few top ics that cause as m uch anx i ety as sex a ndd e ath W hen those top ics are con sid ere d in thefram e work of d is cuss ing them with chil d ren whoare d e a f-b lind m a ny fam i lies a nd pro fes sion als arele ft spee ch less Early this ye ar I re c eived an e-m a il from a m other inN ew Ze a land who was look ing for g uid a nc e on how to help her son g rieve the loss of his g ra nd fa ther

Hi Nancy

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

A Support Service Provid erProgram in Utah

Cord ie W e e d There are not very m any d e a f-blind peo ple inUtah Com pare d to the num b er of peo ple who haveother d is a b il i ties we are a sm all g roup con sist ing of 150 ad ults Ser vices for a d ults who are d e a f-b lind are lim ited State wid e there is only one d e a f-b lindspe cia l ist and one part-tim e re ha b il i ta tion coun shyselor There are also in ter pret ers fund e d b y the statele g is la ture for d e a f-b lind peo ple who re ceive train shying at the Di vi sion of Ser vices for the Blind and Vi shysually Im paire d or who wish to at tend func tionsthere or at the Di vi sion of Ser vices for the De a f orHard of He ar ing These ser vices are very ap pre ci shyate d b ut they b a rely scrape the sur fa c e of the un m etne e ds of d e a f-b lind peo ple in Utah Re cently how ever a new ser vic e b e c am e avail a b le Be g in ning July 1 2001 the state le g is la ture fund e d asup port ser vice pro vid e r pro g ra m For two ye arstwo of m y b lind friend s and I went to the state c ap i shytal in Salt Lake City As m em b ers of the Le g is la tiveCo ali tion for Peo ple with Dis a b il ities we aske d thele g is la ture to fund a sup port ser vice pro vid er (SSP)pro g ra m for d e a f-b lind a d ults W e spent m anyhours talk ing to the leg is la tors W e also con tactedthe m b y phone a nd m ail a nd in spire d oth ers to calland write let ters W e let them know that we wantedto b e m ore in d e pend ent and to live in our own hom es W e aske d for fund ing for the SSP pro g ra mand we g ot it For m a ny d e a f-b lind peo ple life c an b e pretty em pty and lonely For ex am ple one m an who was b ornd e a f-b lind and who is in a nurs ing hom e has no wayto com m u ni cate with the sta ff there They d o notknow sig n la n g ua g e or how to spe a k to him There isno way for him to g et in volved in ac tiv i ties He justsits in a chair all d ay with a b so lute ly noth ing to d o There is a lso a wom an whose fa m ily wants to puther in a nurs ing hom e b e c ause they d o not want toc are for her They fe el that they can not cope with herne e dsIn stea d she chose to m ove into a hous ingcom plex for peo ple who are d is ab le d or have low in shycom es This wom an is un a b le to d o her own shop shyping or care for her per sonal b usi ness She c an notd rive her self any where She ne e d s help to b e a b le tolive in d e pend e ntly I know a m a n who was b orn d e a f a nd spent m ost ofhis years in the d e a f com m u nity As he g ot old er helost his sig ht and was un a b le to con tinue work ingHe is now to ta lly b lind Re cently he and his d e a fwife went to a so cia l a c tiv ity at the De a f Cen ter He

sat there and was b ore d b e c ause he could not se e thesig n lan g ua g e b e ing used a nd no one thoug ht to sig n in his hand s When he and his wife le fthe aske d hiswife if she ha d se en the m an who ha d b e en his d e ar shyest friend for m a ny years She told him that he ha db e e n sit ting next to him a ll eve ning His friend ha dnot said one word to him a nd the m a n was he art b ro shyken Som e d e a f-b lind peo ple live in their own hom es a ndare m ar rie d and have chil d ren Even thoug h theirfam i lies take c are of them they would still like tohave som e one take them out for so cial a c tiv i tiesaway from the fam ily to g ive them a chang e and tog ive the fa m ily a rest I am con sid ered d e a f-b lind m y self I live in m y ownhom e and have a hus b and and two chil d ren Myd aug h ter is m ar ried and has a b a b y My son isg rown b ut still lives at hom e Both of m y chil d reng rew up cop ing with m y d is a b il i ties I have UsherSyn d rom e I am se verely hard of he ar ing a nd havevery lit tle re m a in ing vi sion Even thoug h m y fa m ily has lived with m y in cre as shying d is a b il ity they g row im pa tient and frus tratedwhen I can not he ar or see som e thing I d o not al ways he ar ex actly what they are say ing so com m u ni ca shytion is d if fi cult and m is un d er stand ing s fre quentlyoc cur My hus b a nd has b e e n force d to ta ke on m orere spon si b il i ties b e c ause I c an not shop b y m y self ortravel alone on pub lic trans por ta tion These prob shylem s will only in cre ase as m y con d i tion wors ens I love to he ar what is b e ing said I love to b e a part of it all b ut I a m not b e c ause I can not he ar or se e I a mle ft out a lot and it is very lonely W hen ever I g etfrus trated I can not walk out or g o som e where towork it off I have to stay put un til it b uild s to thepoint where I ex plod e Som e tim es I fe el like I am in ab ox where I can not m ove or let out m y frus tra tionsIwas raise d to b e in d e pend ent and to ta ke c are of afa m ily as well as m y self I wa nt to con tinue to d othat I would like the SSP to help m e b e com e m ore in d e shypend e ntmdash to help m e shop a nd walk m y d og (apure bre d b e a g le ) to rea d m y m ail a nd other cor re shyspon d enc e to m e to b e m y eyes and e ars at so cial ac shytiv i ties and to take m e to m y ap point m ents Thiswould a lso help b y ta k ing som e pres sure off of m yfam ily m em b ers It m e ans so m uch to m e to b e a b leto d o m ore for m y self It m akes m e fe el m ore like ahu m an b e ing W e d e a f-b lind peo ple ne e d ser vice pro vid ers W ene e d help with d aily liv ing in or d er to b e in d e pend shyent It is so m uch che aper to have a sup port ser vicepro vid er tha n to b e put in a nurs ing hom e A sup shyport ser vice pro vid er can b e a friend to a d e a f-b lind

4

Fall 2001

per son and ca n m ake the per sonrsquos life b rig hterSSPrsquos as sis tanc e c an also m ake it e as ier for fa m ilym e m b e rs b y help ing to re lieve frus tra tion a ndstress I re ally hope this pro g ram will work well for m e foroth ers who are d e a f-b lind and for the chil d ren whowill soon b e com e a d ults I hope we will have thispro g ra m for m a ny ye ars and that it will b e suc cess shyful I want to m ake it work and help d e a f-b linda d ults b e in d e pend ent a nd live hap pily I fe el verystrong ly a b out this pro g ram

Valued O utcom es for Stud entsWho Are Deaf-Blind and TheirFam ilies Results of a Survey ofState Deaf-Blind Projects

Lori GoetzSan Francisco State University

N a m ita Jacob Jt Doctoral Prog ram San Francisco State

University - University of California Berkeley

N ora OrsquoFarrellSan Francisco Unifie d School District

Are schools e f fec tively m e et ing the e d u ca tionalne e ds of their spe cial e d u ca tion stu d ents An swersto this ques tion can b e pro vid ed from a va ri ety ofper spec tives A fe d eral law the Gov ern m ent Per for shym ance a nd Re sults Act of 1993 (GPRA) [Pu b ic LawN o 103-62] re quires fe d eral a g e n cies to im provepro g ra m e f fec tive ness and pub lic a c count a b il ity byfo cus ing on re sults ser vice qual ity and cus tom ersat is fa c tion It re quires the es ta b lish m ent of m e a sur shya b le g oals that c an b e re ported as part of the fe d eralb ud g et ary pro c ess In re sponse to GPRA the USDe part m ent of Ed u c a tionrsquos O f fice of Spe cia l Ed u ca shytion Pro g ra m s (O SEP) d e vel oped g uid e lines for spe shycial ed u ca tion pro g ram s that list ob jec tives andper for m ance in d i ca tors for these ob jec tives (O f ficeof Spe cial Ed u c a tion Pro g ram s 1999) The unique ne ss of the a b il i ties a nd ne e d s ofd e a f-b lind chil d ren poses chal leng e s for the cre ation of out com es a nd tools that m e a sure those out com esTo d e ter m ine ways in which the O SEP g uid e linescould b e m a d e m ore m e an ing ful and re flec tive ofthe spe cific e d u c a tiona l ne e d s a nd g oa ls ofd e a f-b lind chil d ren we d e vel ope d a ques tion nairefor state d e a f-b lind pro ject per son nel It aske d re shyspon d ents what they con sid ere d to b e va l ued out shycom es for d e a f-b lind stu d ents their fa m i lies and

5

state and lo ca l sys tem s that pro vid e ser vices W e d e shyfine d a val ue d out com e as a re sult of the school ingpro cess that is b oth in d i vid u a l ized and per ceive d aspos i tive and d e sir a b le The d e vel op m ent of so cialin ter ac tion skills in g re et ing pe ers or a d vo ca cy skills in pro m ot ing in clu sive school ing to a PTA g roup are ex a m ples The ques tion naire also asked re spon shyd ents to id en tify tools and strat e g ies used to m e a shysure these out com es

Results of the Questionnaire In 1998 the ques tion naire was sent to the fifty ex istshying state d e af-b lind pro je cts across the coun tryThese pro je cts are fe d er ally fund e d train ing a ndtech ni cal as sis tanc e en ti ties serv ing schools a g e n shycies and fa m i lies of d e a f-b lind chil d ren and youthPro ject sta ff m e m b ers were in a po si tion to id en tifyout com es that a d d ress the d if fer ent per spec tives ofg roups and in d i vid u a ls in volve d in the lives of chil shyd ren and youth who are d e a f-b lind Twenty-nine ofthe fifty ques tion naires were re turne d a re sponserate of 58 per cent The ques tions were b rie f and open-end ed and d idnot re quire re spon d ents to use a spe cific for m at An shyswers rang e d from sin g le word s phrases and num shyb ere d lists to sen tenc es and para g raphs Given thisd i ver sity in for m at the an swers were a n a lyzed bytwo in d e pend e nt rat ers a nd sum m a rize d in cat e g o shyries of val ue d out com es (se e ta ble ) The c at e g o riesen a b le d a suc cinct syn the sis that hig h lig hte d m a jorfo cus ar e as for stu d ents fa m i lies and sys tem s The rat ers d e vel oped ten c at e g o ries of val ue d out shycom es for stu d ents eig ht for fam i lies a nd five forsys tem -level en ti ties In a d d i tion to id en ti fy ing spe shycific val ued out com es sev era l state pro jects notedthat id e ally val ued out com es for stu d ents and fa m shyi lies should b e d e vel ope d on an in d i vid ual b a sisO th ers com m e nte d that va l ue d out com e s ford e a f-b lind chil d ren and their fa m i lies are no d if fer shyent from those for chil d ren with out d is a b il i ties In ea ch of the three fo cus ar e as (stu d ent fam ily sys shytem ) cer tain re sponses were m en tione d re pe at e d lyb y sev eral re spon d ents Al thoug h the num b e r of re shysponses in e a ch c at e g ory is b ut one in d i ca tor of im shypor tance it is an in d i ca tion of the va l ue d out com esthat are in the fore front of the re spon d e ntsrsquo con shyscious ness The id e as ex presse d m ost of ten in e a chc at e g ory are d is cussed fur ther in this se c tion Growing con cern with the va lue and m e a n ing ofava il a b le in ter ven tions and ser vices is re flecte d inall of the re sponses M ean ing ful par tic i pa tion of thed e a f-b lind in d i vid ual at hom e school and in thecom m u nity is a re cur ring them e

Fall 2001

Stu d e nt O ut com es ldquoCom m u ni c a tion skillsrdquo a ndldquoso cia l skills and friend shipsrdquo were m en tione d re shype at ed ly as va l ued g oa ls for stu d ents Sev eral re shyspon d e nts stre sse d the im por ta nc e ofcom m u ni c a tion skills that are func tional a nd worka cross d if fer ent en vi ron m ents (eg b oth at hom e and at school) Som e re spon d ents stresse d the im shypor tance of the qual ity of re la tion ships They notedthat there is a d if fer ence b e tween re la tion ships withpaid sta ff and those that oc cur with friend s and fa m shyily and they em pha sized the need to en sure that re shyla tion ships are m u tual a nd long last ing Ef fec tive com m u ni ca tion and g ood so cial skills areim por tant el e m ents for suc cess in school en vi ron shym ents The stress on func tiona l com m u ni c a tion a ndm e a n ing ful friend ships re flects the out com es-b ased plan ning em pha sized in the 1997 re authorization ofthe In d i vid uals with Dis a b il ities Ed u ca tion Act(IDEA) There has b e e n con sid er a b le prog ress in thed e vel op m ent a nd re fine m ent of in ter ven tions d e shysig ned to im prove the so cial in ter ac tion a nd com shym u ni c a tion of stu d ents with d is a b il i ties in reg u lare d u ca tion set ting s (Hunt Farron-Davis W renn Hirose-Hata e amp Goetz 1997 O d om McConnell ampMcEvoy 1992 Strain amp Kohler 1995) Fa m ily O ut com es The a va il a b il ity of fa m shyily-specific train ing was the m ost fre quently m en shytioned out com e c at e g ory for fa m i lies Re spon d entsid en ti fie d a ne e d for train ing in the fol low ing ar e as spe cific skills to sup port the child rsquos d e ve l op m ent such as a d a pt ing e n vi ron m e nts and m a te ri alsa nd le arn ing com m u ni ca tion skills a nd tech shyniques

aware ness of avail a b le re sources a d vo cacy skills Sys tem O ut com es Sys tem out com es d e scrib e re shysults that a f fect the struc tures a nd a c tiv i ties of or g a shyni za tions ra ther tha n in d i vid u a ls Re sponsesem pha siz ing col la b o ra tive pla n ning for or g a ni za shytions were the m ost com m only id en ti fie d val uedout com es The in volve m e nt of par ents and chil d renin a col la b o ra tive pla n ning pro cess fos ters sm oothtran si tions and the a chieve m ent of in d e pend encefor stu d ents Pa ren tal in volve m ent in ed u ca tionalpro gra m a nd tra n si tion pla n ning has a lso b e e nfound to pos i tively a f fe ct stu d entsrsquo a c a d e m ic out shycom es (M orning star Turnb ull amp Turnb ull 1995-1996 Everson amp Moon 1987 Sales MetzlerEverson amp Moon 1991) In fre quently Re ported Re sponses Equally in ter shyest ing a nd wor thy of fur ther re se arch are the c at e g o shyrie s tha t re c e ive d the le a st a t te n tion fromre spon d ents Only a sm a ll num b er of re spon d entsm en tione d a c a d em ic skills a nd se lf-a d voca cy as val shy

ued out com es for stu d e nts Only a few m en tionedem pow er m ent as an im por tant out com e for fam i lies or for in clu sion as a sys tem -level out com e Em pow shyer m ent and in clu sion have re ceive d a g re at d e a l ofat ten tion in the g e n eral lit er a ture on spe cial e d u ca shytion (Dunst Trivette amp Deal 1994 Fa lvey 1995) Itis sur pris ing that they re ceive d such sc ant at ten tionhere

Cate gories of Valued O utcom es Stu d ent O ut com es N um b er of Re sponsesSo cial skills and frie nd ship 25In clu sion into com m u nity 16Com m u ni c a tion skills 16Se lf-help a nd in d e pe nd e nt liv ing skills 15

W orkCa re er 14

He alth vi sion and hear ing 12Rec re ation and lei sure 8

Tran si tion 6

Ac a d e m ic skills 5

Se lf-ad voc a cy 4

To tal Stu d ent Re sponses 121

Fam ily O ut com es N um b er of Re sponses Fa m ily-specific train ing 20V alue d m e m b e r of fa m ily a nd com m u nity 15

Re sources for a d ult in d e pend ence 14

Re sources for fam i lies 12Fa m ily sta b il ity 8

Con nec tions for fa m i lies 8

Fa m ilypro fes sional col la b o ra tion 6

Em pow er m ent of fa m i lies 3

To tal Fam ily Re sponses 86

Sys tem O ut com es Num b er of Re sponses Col lab o ra tive plan ning 30Sta ff avail a b il ity and train ing 18

Re sources for com m u nity in clu sion 17

IEPIFSP qual ity 13Ra ng e of e d u ca tiona l pla c e m ent op tions 10

In clu sion 5

To tal Sys tem O ut com es 93

6

Fall 2001

Assessm ent IssuesThe IDEA Am e nd m ents of 1997 pla c e g re at em pha shysis on m e a sur ing re sults throug h im prove d a c shycount a b il ity and d ata col lec tion ef forts There is are newed re li ance on the use of as sess m ents to m e a shysure the per for m anc e of stu d ents and their prog ressto ward m e et ing id en ti fie d stan d ard s In re sponsesto our ques tion naire we id en ti fie d a to ta l of eig h shyteen as sess m ent tools and m e a sures in clud ing sev shyera l cur ric ula a nd in for m a l m e th od s of d a tacol lec tion such as case stud ies and in ter views Notool was m en tione d with suf fi cie nt fre quency to b erep re sen ta tive of the re sponses

Conclusion The OSEP g uid e lines d e scrib e ob jec tives in g en eralterm s such as ldquoim prove ed u ca tiona l re sults for chil shyd ren with d is ab il i tiesrdquoThe re sults of the ques tion shynaire re porte d here re flect how state d e a f-b lindpro ject per son nel in ter prete d these ob je c tives interm s of a c tual prac tice with stu d ents fa m i lies andser vice pro vid ers For ex am ple d e vel op m ent ofcom m u ni c a tion skills and so cial skills and friend shyship em erg e d a s key el e m ents for the ob jec tive of im shyprov ing e d u ca tiona l re sults There are a cou ple of lim i ta tions to the re sults of thisstud y First the 58 per cent re sponse rate lim its theg en er a l ity of the find ings A fur ther lim i ta tion is that the ques tions aske d were very b rie f A m ore d e tailed sur vey or the use of fo cus g roups would a d d to thed epth of the in for m a tion that could b e ob taine d The d e vel op m ent of val ue d out com es for stu d entsfam i lies and sys tem s ca n have d i rect im pli ca tionsfor the eval u a tion of pro g ra ms serv ing stu d entswho are d e a f-b lind a nd their fa m i lies Pro g ram sser vic es and tech ni cal as sis tanc e e f forts that arecon sis tent with the val ued out com es re ported herewill streng then the alig n m ent b e tween ac tual prac shytice and the goa ls of those who as sist and sup portpra c ti tio ners work ing with d e a f-b lind chil d renFur ther stud y a nd d e vel op m ent of val ue d out com es for d e a f-b lind stu d ents a nd the cre ation a nd use oftools to m e a sure prog ress to ward s e d u c a tionalg oals should b e a pri or ity for the field

References Dunst C J Trivette C M amp Deal A G (Ed s) (1994)Supporting a nd strengthening fa m ilies Method sstrateg ies and practices Brookline MA Brookline Books Everson J M amp Moon S M (1987) Transition servicesfor young a d ults with severe d isa b ilities Defining

7

professional and parental roles and responsib ilitiesJournal of the Association of Persons with SevereHand icaps 12 (2) 87-95 Falvey M A (Ed ) (1995)Inclusive and heterog eneousschooling Assessm ent curriculum and instructionBa ltim ore Paul H Brookes Hunt P Farron-Davis F W renn M Hirose-Hata e A amp Goe tz L (1997) Prom oting inte ra c tivepartnerships in inclusive ed ucationa l setting s Journalof the Association of Persons with Severe Hand icaps 22 (3)127-37 Morning star M E Turnb ull A P amp Turnbull H R(1995-1996) W hat d o stud ents with d isa b ilities tell usa b out the im portance of fa m ily involvem ent in thetra nsition from school to a d ult life Exceptional Children 62 (3) 249-60 O d om S L McConnell S R amp McEvoy M A (Ed s)(1992) Social com petence of young child ren withdisabilities Baltim ore Paul H Brookes O ffice of Special Ed uc ation Prog ram s US Departm ent of Ed uc a tion (1999)FY 2000 Annua l Prog ra mPerform a nce Plans und er GPRA Ind ivid uals withDisa bilities Education Act (IDEA) Sub m itted to Cong ress Fe bruary 25 1999 Sales P Metzler H M Everson J M amp Moon M S (1991) Quality ind ica tors of succ essful vocationaltra nsition prog ra m s Journa l of Voc a tiona l Rehabilitation 1 (4) 47-63 Strain P S amp Kohler F W (1995) Ana lyzingpre d ictors of d a ily social skill perform a nc e Behavior Disord ers 21 (1) 79-88

Helping Children Cope WithGrief A Discussion of Options for Parents of Deaf-Blind

Child ren Compile d b y

N a ncy OrsquoDonnellHelen Keller N ational Center

W hen it co m es to par entchild d i a log ues thereare few top ics that cause as m uch anx i ety as sex a ndd e ath W hen those top ics are con sid ere d in thefram e work of d is cuss ing them with chil d ren whoare d e a f-b lind m a ny fam i lies a nd pro fes sion als arele ft spee ch less Early this ye ar I re c eived an e-m a il from a m other inN ew Ze a land who was look ing for g uid a nc e on how to help her son g rieve the loss of his g ra nd fa ther

Hi Nancy

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

per son and ca n m ake the per sonrsquos life b rig hterSSPrsquos as sis tanc e c an also m ake it e as ier for fa m ilym e m b e rs b y help ing to re lieve frus tra tion a ndstress I re ally hope this pro g ram will work well for m e foroth ers who are d e a f-b lind and for the chil d ren whowill soon b e com e a d ults I hope we will have thispro g ra m for m a ny ye ars and that it will b e suc cess shyful I want to m ake it work and help d e a f-b linda d ults b e in d e pend ent a nd live hap pily I fe el verystrong ly a b out this pro g ram

Valued O utcom es for Stud entsWho Are Deaf-Blind and TheirFam ilies Results of a Survey ofState Deaf-Blind Projects

Lori GoetzSan Francisco State University

N a m ita Jacob Jt Doctoral Prog ram San Francisco State

University - University of California Berkeley

N ora OrsquoFarrellSan Francisco Unifie d School District

Are schools e f fec tively m e et ing the e d u ca tionalne e ds of their spe cial e d u ca tion stu d ents An swersto this ques tion can b e pro vid ed from a va ri ety ofper spec tives A fe d eral law the Gov ern m ent Per for shym ance a nd Re sults Act of 1993 (GPRA) [Pu b ic LawN o 103-62] re quires fe d eral a g e n cies to im provepro g ra m e f fec tive ness and pub lic a c count a b il ity byfo cus ing on re sults ser vice qual ity and cus tom ersat is fa c tion It re quires the es ta b lish m ent of m e a sur shya b le g oals that c an b e re ported as part of the fe d eralb ud g et ary pro c ess In re sponse to GPRA the USDe part m ent of Ed u c a tionrsquos O f fice of Spe cia l Ed u ca shytion Pro g ra m s (O SEP) d e vel oped g uid e lines for spe shycial ed u ca tion pro g ram s that list ob jec tives andper for m ance in d i ca tors for these ob jec tives (O f ficeof Spe cial Ed u c a tion Pro g ram s 1999) The unique ne ss of the a b il i ties a nd ne e d s ofd e a f-b lind chil d ren poses chal leng e s for the cre ation of out com es a nd tools that m e a sure those out com esTo d e ter m ine ways in which the O SEP g uid e linescould b e m a d e m ore m e an ing ful and re flec tive ofthe spe cific e d u c a tiona l ne e d s a nd g oa ls ofd e a f-b lind chil d ren we d e vel ope d a ques tion nairefor state d e a f-b lind pro ject per son nel It aske d re shyspon d ents what they con sid ere d to b e va l ued out shycom es for d e a f-b lind stu d ents their fa m i lies and

5

state and lo ca l sys tem s that pro vid e ser vices W e d e shyfine d a val ue d out com e as a re sult of the school ingpro cess that is b oth in d i vid u a l ized and per ceive d aspos i tive and d e sir a b le The d e vel op m ent of so cialin ter ac tion skills in g re et ing pe ers or a d vo ca cy skills in pro m ot ing in clu sive school ing to a PTA g roup are ex a m ples The ques tion naire also asked re spon shyd ents to id en tify tools and strat e g ies used to m e a shysure these out com es

Results of the Questionnaire In 1998 the ques tion naire was sent to the fifty ex istshying state d e af-b lind pro je cts across the coun tryThese pro je cts are fe d er ally fund e d train ing a ndtech ni cal as sis tanc e en ti ties serv ing schools a g e n shycies and fa m i lies of d e a f-b lind chil d ren and youthPro ject sta ff m e m b ers were in a po si tion to id en tifyout com es that a d d ress the d if fer ent per spec tives ofg roups and in d i vid u a ls in volve d in the lives of chil shyd ren and youth who are d e a f-b lind Twenty-nine ofthe fifty ques tion naires were re turne d a re sponserate of 58 per cent The ques tions were b rie f and open-end ed and d idnot re quire re spon d ents to use a spe cific for m at An shyswers rang e d from sin g le word s phrases and num shyb ere d lists to sen tenc es and para g raphs Given thisd i ver sity in for m at the an swers were a n a lyzed bytwo in d e pend e nt rat ers a nd sum m a rize d in cat e g o shyries of val ue d out com es (se e ta ble ) The c at e g o riesen a b le d a suc cinct syn the sis that hig h lig hte d m a jorfo cus ar e as for stu d ents fa m i lies and sys tem s The rat ers d e vel oped ten c at e g o ries of val ue d out shycom es for stu d ents eig ht for fam i lies a nd five forsys tem -level en ti ties In a d d i tion to id en ti fy ing spe shycific val ued out com es sev era l state pro jects notedthat id e ally val ued out com es for stu d ents and fa m shyi lies should b e d e vel ope d on an in d i vid ual b a sisO th ers com m e nte d that va l ue d out com e s ford e a f-b lind chil d ren and their fa m i lies are no d if fer shyent from those for chil d ren with out d is a b il i ties In ea ch of the three fo cus ar e as (stu d ent fam ily sys shytem ) cer tain re sponses were m en tione d re pe at e d lyb y sev eral re spon d ents Al thoug h the num b e r of re shysponses in e a ch c at e g ory is b ut one in d i ca tor of im shypor tance it is an in d i ca tion of the va l ue d out com esthat are in the fore front of the re spon d e ntsrsquo con shyscious ness The id e as ex presse d m ost of ten in e a chc at e g ory are d is cussed fur ther in this se c tion Growing con cern with the va lue and m e a n ing ofava il a b le in ter ven tions and ser vices is re flecte d inall of the re sponses M ean ing ful par tic i pa tion of thed e a f-b lind in d i vid ual at hom e school and in thecom m u nity is a re cur ring them e

Fall 2001

Stu d e nt O ut com es ldquoCom m u ni c a tion skillsrdquo a ndldquoso cia l skills and friend shipsrdquo were m en tione d re shype at ed ly as va l ued g oa ls for stu d ents Sev eral re shyspon d e nts stre sse d the im por ta nc e ofcom m u ni c a tion skills that are func tional a nd worka cross d if fer ent en vi ron m ents (eg b oth at hom e and at school) Som e re spon d ents stresse d the im shypor tance of the qual ity of re la tion ships They notedthat there is a d if fer ence b e tween re la tion ships withpaid sta ff and those that oc cur with friend s and fa m shyily and they em pha sized the need to en sure that re shyla tion ships are m u tual a nd long last ing Ef fec tive com m u ni ca tion and g ood so cial skills areim por tant el e m ents for suc cess in school en vi ron shym ents The stress on func tiona l com m u ni c a tion a ndm e a n ing ful friend ships re flects the out com es-b ased plan ning em pha sized in the 1997 re authorization ofthe In d i vid uals with Dis a b il ities Ed u ca tion Act(IDEA) There has b e e n con sid er a b le prog ress in thed e vel op m ent a nd re fine m ent of in ter ven tions d e shysig ned to im prove the so cial in ter ac tion a nd com shym u ni c a tion of stu d ents with d is a b il i ties in reg u lare d u ca tion set ting s (Hunt Farron-Davis W renn Hirose-Hata e amp Goetz 1997 O d om McConnell ampMcEvoy 1992 Strain amp Kohler 1995) Fa m ily O ut com es The a va il a b il ity of fa m shyily-specific train ing was the m ost fre quently m en shytioned out com e c at e g ory for fa m i lies Re spon d entsid en ti fie d a ne e d for train ing in the fol low ing ar e as spe cific skills to sup port the child rsquos d e ve l op m ent such as a d a pt ing e n vi ron m e nts and m a te ri alsa nd le arn ing com m u ni ca tion skills a nd tech shyniques

aware ness of avail a b le re sources a d vo cacy skills Sys tem O ut com es Sys tem out com es d e scrib e re shysults that a f fect the struc tures a nd a c tiv i ties of or g a shyni za tions ra ther tha n in d i vid u a ls Re sponsesem pha siz ing col la b o ra tive pla n ning for or g a ni za shytions were the m ost com m only id en ti fie d val uedout com es The in volve m e nt of par ents and chil d renin a col la b o ra tive pla n ning pro cess fos ters sm oothtran si tions and the a chieve m ent of in d e pend encefor stu d ents Pa ren tal in volve m ent in ed u ca tionalpro gra m a nd tra n si tion pla n ning has a lso b e e nfound to pos i tively a f fe ct stu d entsrsquo a c a d e m ic out shycom es (M orning star Turnb ull amp Turnb ull 1995-1996 Everson amp Moon 1987 Sales MetzlerEverson amp Moon 1991) In fre quently Re ported Re sponses Equally in ter shyest ing a nd wor thy of fur ther re se arch are the c at e g o shyrie s tha t re c e ive d the le a st a t te n tion fromre spon d ents Only a sm a ll num b er of re spon d entsm en tione d a c a d em ic skills a nd se lf-a d voca cy as val shy

ued out com es for stu d e nts Only a few m en tionedem pow er m ent as an im por tant out com e for fam i lies or for in clu sion as a sys tem -level out com e Em pow shyer m ent and in clu sion have re ceive d a g re at d e a l ofat ten tion in the g e n eral lit er a ture on spe cial e d u ca shytion (Dunst Trivette amp Deal 1994 Fa lvey 1995) Itis sur pris ing that they re ceive d such sc ant at ten tionhere

Cate gories of Valued O utcom es Stu d ent O ut com es N um b er of Re sponsesSo cial skills and frie nd ship 25In clu sion into com m u nity 16Com m u ni c a tion skills 16Se lf-help a nd in d e pe nd e nt liv ing skills 15

W orkCa re er 14

He alth vi sion and hear ing 12Rec re ation and lei sure 8

Tran si tion 6

Ac a d e m ic skills 5

Se lf-ad voc a cy 4

To tal Stu d ent Re sponses 121

Fam ily O ut com es N um b er of Re sponses Fa m ily-specific train ing 20V alue d m e m b e r of fa m ily a nd com m u nity 15

Re sources for a d ult in d e pend ence 14

Re sources for fam i lies 12Fa m ily sta b il ity 8

Con nec tions for fa m i lies 8

Fa m ilypro fes sional col la b o ra tion 6

Em pow er m ent of fa m i lies 3

To tal Fam ily Re sponses 86

Sys tem O ut com es Num b er of Re sponses Col lab o ra tive plan ning 30Sta ff avail a b il ity and train ing 18

Re sources for com m u nity in clu sion 17

IEPIFSP qual ity 13Ra ng e of e d u ca tiona l pla c e m ent op tions 10

In clu sion 5

To tal Sys tem O ut com es 93

6

Fall 2001

Assessm ent IssuesThe IDEA Am e nd m ents of 1997 pla c e g re at em pha shysis on m e a sur ing re sults throug h im prove d a c shycount a b il ity and d ata col lec tion ef forts There is are newed re li ance on the use of as sess m ents to m e a shysure the per for m anc e of stu d ents and their prog ressto ward m e et ing id en ti fie d stan d ard s In re sponsesto our ques tion naire we id en ti fie d a to ta l of eig h shyteen as sess m ent tools and m e a sures in clud ing sev shyera l cur ric ula a nd in for m a l m e th od s of d a tacol lec tion such as case stud ies and in ter views Notool was m en tione d with suf fi cie nt fre quency to b erep re sen ta tive of the re sponses

Conclusion The OSEP g uid e lines d e scrib e ob jec tives in g en eralterm s such as ldquoim prove ed u ca tiona l re sults for chil shyd ren with d is ab il i tiesrdquoThe re sults of the ques tion shynaire re porte d here re flect how state d e a f-b lindpro ject per son nel in ter prete d these ob je c tives interm s of a c tual prac tice with stu d ents fa m i lies andser vice pro vid ers For ex am ple d e vel op m ent ofcom m u ni c a tion skills and so cial skills and friend shyship em erg e d a s key el e m ents for the ob jec tive of im shyprov ing e d u ca tiona l re sults There are a cou ple of lim i ta tions to the re sults of thisstud y First the 58 per cent re sponse rate lim its theg en er a l ity of the find ings A fur ther lim i ta tion is that the ques tions aske d were very b rie f A m ore d e tailed sur vey or the use of fo cus g roups would a d d to thed epth of the in for m a tion that could b e ob taine d The d e vel op m ent of val ue d out com es for stu d entsfam i lies and sys tem s ca n have d i rect im pli ca tionsfor the eval u a tion of pro g ra ms serv ing stu d entswho are d e a f-b lind a nd their fa m i lies Pro g ram sser vic es and tech ni cal as sis tanc e e f forts that arecon sis tent with the val ued out com es re ported herewill streng then the alig n m ent b e tween ac tual prac shytice and the goa ls of those who as sist and sup portpra c ti tio ners work ing with d e a f-b lind chil d renFur ther stud y a nd d e vel op m ent of val ue d out com es for d e a f-b lind stu d ents a nd the cre ation a nd use oftools to m e a sure prog ress to ward s e d u c a tionalg oals should b e a pri or ity for the field

References Dunst C J Trivette C M amp Deal A G (Ed s) (1994)Supporting a nd strengthening fa m ilies Method sstrateg ies and practices Brookline MA Brookline Books Everson J M amp Moon S M (1987) Transition servicesfor young a d ults with severe d isa b ilities Defining

7

professional and parental roles and responsib ilitiesJournal of the Association of Persons with SevereHand icaps 12 (2) 87-95 Falvey M A (Ed ) (1995)Inclusive and heterog eneousschooling Assessm ent curriculum and instructionBa ltim ore Paul H Brookes Hunt P Farron-Davis F W renn M Hirose-Hata e A amp Goe tz L (1997) Prom oting inte ra c tivepartnerships in inclusive ed ucationa l setting s Journalof the Association of Persons with Severe Hand icaps 22 (3)127-37 Morning star M E Turnb ull A P amp Turnbull H R(1995-1996) W hat d o stud ents with d isa b ilities tell usa b out the im portance of fa m ily involvem ent in thetra nsition from school to a d ult life Exceptional Children 62 (3) 249-60 O d om S L McConnell S R amp McEvoy M A (Ed s)(1992) Social com petence of young child ren withdisabilities Baltim ore Paul H Brookes O ffice of Special Ed uc ation Prog ram s US Departm ent of Ed uc a tion (1999)FY 2000 Annua l Prog ra mPerform a nce Plans und er GPRA Ind ivid uals withDisa bilities Education Act (IDEA) Sub m itted to Cong ress Fe bruary 25 1999 Sales P Metzler H M Everson J M amp Moon M S (1991) Quality ind ica tors of succ essful vocationaltra nsition prog ra m s Journa l of Voc a tiona l Rehabilitation 1 (4) 47-63 Strain P S amp Kohler F W (1995) Ana lyzingpre d ictors of d a ily social skill perform a nc e Behavior Disord ers 21 (1) 79-88

Helping Children Cope WithGrief A Discussion of Options for Parents of Deaf-Blind

Child ren Compile d b y

N a ncy OrsquoDonnellHelen Keller N ational Center

W hen it co m es to par entchild d i a log ues thereare few top ics that cause as m uch anx i ety as sex a ndd e ath W hen those top ics are con sid ere d in thefram e work of d is cuss ing them with chil d ren whoare d e a f-b lind m a ny fam i lies a nd pro fes sion als arele ft spee ch less Early this ye ar I re c eived an e-m a il from a m other inN ew Ze a land who was look ing for g uid a nc e on how to help her son g rieve the loss of his g ra nd fa ther

Hi Nancy

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

Stu d e nt O ut com es ldquoCom m u ni c a tion skillsrdquo a ndldquoso cia l skills and friend shipsrdquo were m en tione d re shype at ed ly as va l ued g oa ls for stu d ents Sev eral re shyspon d e nts stre sse d the im por ta nc e ofcom m u ni c a tion skills that are func tional a nd worka cross d if fer ent en vi ron m ents (eg b oth at hom e and at school) Som e re spon d ents stresse d the im shypor tance of the qual ity of re la tion ships They notedthat there is a d if fer ence b e tween re la tion ships withpaid sta ff and those that oc cur with friend s and fa m shyily and they em pha sized the need to en sure that re shyla tion ships are m u tual a nd long last ing Ef fec tive com m u ni ca tion and g ood so cial skills areim por tant el e m ents for suc cess in school en vi ron shym ents The stress on func tiona l com m u ni c a tion a ndm e a n ing ful friend ships re flects the out com es-b ased plan ning em pha sized in the 1997 re authorization ofthe In d i vid uals with Dis a b il ities Ed u ca tion Act(IDEA) There has b e e n con sid er a b le prog ress in thed e vel op m ent a nd re fine m ent of in ter ven tions d e shysig ned to im prove the so cial in ter ac tion a nd com shym u ni c a tion of stu d ents with d is a b il i ties in reg u lare d u ca tion set ting s (Hunt Farron-Davis W renn Hirose-Hata e amp Goetz 1997 O d om McConnell ampMcEvoy 1992 Strain amp Kohler 1995) Fa m ily O ut com es The a va il a b il ity of fa m shyily-specific train ing was the m ost fre quently m en shytioned out com e c at e g ory for fa m i lies Re spon d entsid en ti fie d a ne e d for train ing in the fol low ing ar e as spe cific skills to sup port the child rsquos d e ve l op m ent such as a d a pt ing e n vi ron m e nts and m a te ri alsa nd le arn ing com m u ni ca tion skills a nd tech shyniques

aware ness of avail a b le re sources a d vo cacy skills Sys tem O ut com es Sys tem out com es d e scrib e re shysults that a f fect the struc tures a nd a c tiv i ties of or g a shyni za tions ra ther tha n in d i vid u a ls Re sponsesem pha siz ing col la b o ra tive pla n ning for or g a ni za shytions were the m ost com m only id en ti fie d val uedout com es The in volve m e nt of par ents and chil d renin a col la b o ra tive pla n ning pro cess fos ters sm oothtran si tions and the a chieve m ent of in d e pend encefor stu d ents Pa ren tal in volve m ent in ed u ca tionalpro gra m a nd tra n si tion pla n ning has a lso b e e nfound to pos i tively a f fe ct stu d entsrsquo a c a d e m ic out shycom es (M orning star Turnb ull amp Turnb ull 1995-1996 Everson amp Moon 1987 Sales MetzlerEverson amp Moon 1991) In fre quently Re ported Re sponses Equally in ter shyest ing a nd wor thy of fur ther re se arch are the c at e g o shyrie s tha t re c e ive d the le a st a t te n tion fromre spon d ents Only a sm a ll num b er of re spon d entsm en tione d a c a d em ic skills a nd se lf-a d voca cy as val shy

ued out com es for stu d e nts Only a few m en tionedem pow er m ent as an im por tant out com e for fam i lies or for in clu sion as a sys tem -level out com e Em pow shyer m ent and in clu sion have re ceive d a g re at d e a l ofat ten tion in the g e n eral lit er a ture on spe cial e d u ca shytion (Dunst Trivette amp Deal 1994 Fa lvey 1995) Itis sur pris ing that they re ceive d such sc ant at ten tionhere

Cate gories of Valued O utcom es Stu d ent O ut com es N um b er of Re sponsesSo cial skills and frie nd ship 25In clu sion into com m u nity 16Com m u ni c a tion skills 16Se lf-help a nd in d e pe nd e nt liv ing skills 15

W orkCa re er 14

He alth vi sion and hear ing 12Rec re ation and lei sure 8

Tran si tion 6

Ac a d e m ic skills 5

Se lf-ad voc a cy 4

To tal Stu d ent Re sponses 121

Fam ily O ut com es N um b er of Re sponses Fa m ily-specific train ing 20V alue d m e m b e r of fa m ily a nd com m u nity 15

Re sources for a d ult in d e pend ence 14

Re sources for fam i lies 12Fa m ily sta b il ity 8

Con nec tions for fa m i lies 8

Fa m ilypro fes sional col la b o ra tion 6

Em pow er m ent of fa m i lies 3

To tal Fam ily Re sponses 86

Sys tem O ut com es Num b er of Re sponses Col lab o ra tive plan ning 30Sta ff avail a b il ity and train ing 18

Re sources for com m u nity in clu sion 17

IEPIFSP qual ity 13Ra ng e of e d u ca tiona l pla c e m ent op tions 10

In clu sion 5

To tal Sys tem O ut com es 93

6

Fall 2001

Assessm ent IssuesThe IDEA Am e nd m ents of 1997 pla c e g re at em pha shysis on m e a sur ing re sults throug h im prove d a c shycount a b il ity and d ata col lec tion ef forts There is are newed re li ance on the use of as sess m ents to m e a shysure the per for m anc e of stu d ents and their prog ressto ward m e et ing id en ti fie d stan d ard s In re sponsesto our ques tion naire we id en ti fie d a to ta l of eig h shyteen as sess m ent tools and m e a sures in clud ing sev shyera l cur ric ula a nd in for m a l m e th od s of d a tacol lec tion such as case stud ies and in ter views Notool was m en tione d with suf fi cie nt fre quency to b erep re sen ta tive of the re sponses

Conclusion The OSEP g uid e lines d e scrib e ob jec tives in g en eralterm s such as ldquoim prove ed u ca tiona l re sults for chil shyd ren with d is ab il i tiesrdquoThe re sults of the ques tion shynaire re porte d here re flect how state d e a f-b lindpro ject per son nel in ter prete d these ob je c tives interm s of a c tual prac tice with stu d ents fa m i lies andser vice pro vid ers For ex am ple d e vel op m ent ofcom m u ni c a tion skills and so cial skills and friend shyship em erg e d a s key el e m ents for the ob jec tive of im shyprov ing e d u ca tiona l re sults There are a cou ple of lim i ta tions to the re sults of thisstud y First the 58 per cent re sponse rate lim its theg en er a l ity of the find ings A fur ther lim i ta tion is that the ques tions aske d were very b rie f A m ore d e tailed sur vey or the use of fo cus g roups would a d d to thed epth of the in for m a tion that could b e ob taine d The d e vel op m ent of val ue d out com es for stu d entsfam i lies and sys tem s ca n have d i rect im pli ca tionsfor the eval u a tion of pro g ra ms serv ing stu d entswho are d e a f-b lind a nd their fa m i lies Pro g ram sser vic es and tech ni cal as sis tanc e e f forts that arecon sis tent with the val ued out com es re ported herewill streng then the alig n m ent b e tween ac tual prac shytice and the goa ls of those who as sist and sup portpra c ti tio ners work ing with d e a f-b lind chil d renFur ther stud y a nd d e vel op m ent of val ue d out com es for d e a f-b lind stu d ents a nd the cre ation a nd use oftools to m e a sure prog ress to ward s e d u c a tionalg oals should b e a pri or ity for the field

References Dunst C J Trivette C M amp Deal A G (Ed s) (1994)Supporting a nd strengthening fa m ilies Method sstrateg ies and practices Brookline MA Brookline Books Everson J M amp Moon S M (1987) Transition servicesfor young a d ults with severe d isa b ilities Defining

7

professional and parental roles and responsib ilitiesJournal of the Association of Persons with SevereHand icaps 12 (2) 87-95 Falvey M A (Ed ) (1995)Inclusive and heterog eneousschooling Assessm ent curriculum and instructionBa ltim ore Paul H Brookes Hunt P Farron-Davis F W renn M Hirose-Hata e A amp Goe tz L (1997) Prom oting inte ra c tivepartnerships in inclusive ed ucationa l setting s Journalof the Association of Persons with Severe Hand icaps 22 (3)127-37 Morning star M E Turnb ull A P amp Turnbull H R(1995-1996) W hat d o stud ents with d isa b ilities tell usa b out the im portance of fa m ily involvem ent in thetra nsition from school to a d ult life Exceptional Children 62 (3) 249-60 O d om S L McConnell S R amp McEvoy M A (Ed s)(1992) Social com petence of young child ren withdisabilities Baltim ore Paul H Brookes O ffice of Special Ed uc ation Prog ram s US Departm ent of Ed uc a tion (1999)FY 2000 Annua l Prog ra mPerform a nce Plans und er GPRA Ind ivid uals withDisa bilities Education Act (IDEA) Sub m itted to Cong ress Fe bruary 25 1999 Sales P Metzler H M Everson J M amp Moon M S (1991) Quality ind ica tors of succ essful vocationaltra nsition prog ra m s Journa l of Voc a tiona l Rehabilitation 1 (4) 47-63 Strain P S amp Kohler F W (1995) Ana lyzingpre d ictors of d a ily social skill perform a nc e Behavior Disord ers 21 (1) 79-88

Helping Children Cope WithGrief A Discussion of Options for Parents of Deaf-Blind

Child ren Compile d b y

N a ncy OrsquoDonnellHelen Keller N ational Center

W hen it co m es to par entchild d i a log ues thereare few top ics that cause as m uch anx i ety as sex a ndd e ath W hen those top ics are con sid ere d in thefram e work of d is cuss ing them with chil d ren whoare d e a f-b lind m a ny fam i lies a nd pro fes sion als arele ft spee ch less Early this ye ar I re c eived an e-m a il from a m other inN ew Ze a land who was look ing for g uid a nc e on how to help her son g rieve the loss of his g ra nd fa ther

Hi Nancy

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

Assessm ent IssuesThe IDEA Am e nd m ents of 1997 pla c e g re at em pha shysis on m e a sur ing re sults throug h im prove d a c shycount a b il ity and d ata col lec tion ef forts There is are newed re li ance on the use of as sess m ents to m e a shysure the per for m anc e of stu d ents and their prog ressto ward m e et ing id en ti fie d stan d ard s In re sponsesto our ques tion naire we id en ti fie d a to ta l of eig h shyteen as sess m ent tools and m e a sures in clud ing sev shyera l cur ric ula a nd in for m a l m e th od s of d a tacol lec tion such as case stud ies and in ter views Notool was m en tione d with suf fi cie nt fre quency to b erep re sen ta tive of the re sponses

Conclusion The OSEP g uid e lines d e scrib e ob jec tives in g en eralterm s such as ldquoim prove ed u ca tiona l re sults for chil shyd ren with d is ab il i tiesrdquoThe re sults of the ques tion shynaire re porte d here re flect how state d e a f-b lindpro ject per son nel in ter prete d these ob je c tives interm s of a c tual prac tice with stu d ents fa m i lies andser vice pro vid ers For ex am ple d e vel op m ent ofcom m u ni c a tion skills and so cial skills and friend shyship em erg e d a s key el e m ents for the ob jec tive of im shyprov ing e d u ca tiona l re sults There are a cou ple of lim i ta tions to the re sults of thisstud y First the 58 per cent re sponse rate lim its theg en er a l ity of the find ings A fur ther lim i ta tion is that the ques tions aske d were very b rie f A m ore d e tailed sur vey or the use of fo cus g roups would a d d to thed epth of the in for m a tion that could b e ob taine d The d e vel op m ent of val ue d out com es for stu d entsfam i lies and sys tem s ca n have d i rect im pli ca tionsfor the eval u a tion of pro g ra ms serv ing stu d entswho are d e a f-b lind a nd their fa m i lies Pro g ram sser vic es and tech ni cal as sis tanc e e f forts that arecon sis tent with the val ued out com es re ported herewill streng then the alig n m ent b e tween ac tual prac shytice and the goa ls of those who as sist and sup portpra c ti tio ners work ing with d e a f-b lind chil d renFur ther stud y a nd d e vel op m ent of val ue d out com es for d e a f-b lind stu d ents a nd the cre ation a nd use oftools to m e a sure prog ress to ward s e d u c a tionalg oals should b e a pri or ity for the field

References Dunst C J Trivette C M amp Deal A G (Ed s) (1994)Supporting a nd strengthening fa m ilies Method sstrateg ies and practices Brookline MA Brookline Books Everson J M amp Moon S M (1987) Transition servicesfor young a d ults with severe d isa b ilities Defining

7

professional and parental roles and responsib ilitiesJournal of the Association of Persons with SevereHand icaps 12 (2) 87-95 Falvey M A (Ed ) (1995)Inclusive and heterog eneousschooling Assessm ent curriculum and instructionBa ltim ore Paul H Brookes Hunt P Farron-Davis F W renn M Hirose-Hata e A amp Goe tz L (1997) Prom oting inte ra c tivepartnerships in inclusive ed ucationa l setting s Journalof the Association of Persons with Severe Hand icaps 22 (3)127-37 Morning star M E Turnb ull A P amp Turnbull H R(1995-1996) W hat d o stud ents with d isa b ilities tell usa b out the im portance of fa m ily involvem ent in thetra nsition from school to a d ult life Exceptional Children 62 (3) 249-60 O d om S L McConnell S R amp McEvoy M A (Ed s)(1992) Social com petence of young child ren withdisabilities Baltim ore Paul H Brookes O ffice of Special Ed uc ation Prog ram s US Departm ent of Ed uc a tion (1999)FY 2000 Annua l Prog ra mPerform a nce Plans und er GPRA Ind ivid uals withDisa bilities Education Act (IDEA) Sub m itted to Cong ress Fe bruary 25 1999 Sales P Metzler H M Everson J M amp Moon M S (1991) Quality ind ica tors of succ essful vocationaltra nsition prog ra m s Journa l of Voc a tiona l Rehabilitation 1 (4) 47-63 Strain P S amp Kohler F W (1995) Ana lyzingpre d ictors of d a ily social skill perform a nc e Behavior Disord ers 21 (1) 79-88

Helping Children Cope WithGrief A Discussion of Options for Parents of Deaf-Blind

Child ren Compile d b y

N a ncy OrsquoDonnellHelen Keller N ational Center

W hen it co m es to par entchild d i a log ues thereare few top ics that cause as m uch anx i ety as sex a ndd e ath W hen those top ics are con sid ere d in thefram e work of d is cuss ing them with chil d ren whoare d e a f-b lind m a ny fam i lies a nd pro fes sion als arele ft spee ch less Early this ye ar I re c eived an e-m a il from a m other inN ew Ze a land who was look ing for g uid a nc e on how to help her son g rieve the loss of his g ra nd fa ther

Hi Nancy

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

On Christ mas Day my Dad passed away sud shydenly mdash and as you can imag ine this has been trau matic for us all mdash but most of all for Chris [age 31 deaf-blind due to con gen i tal ru bella syn drome] The day af ter he came down with the flu and has been in bed since He is med ishycally much better but emo tion ally he is not Do I start get ting a lit tle tough and say ldquoYou have to get out and aboutrdquo or do I let him just do his own thing He also has di a be tes so has to have ex shyer cise mdash I just donrsquot know what to do Thank you There is no one here to help and doc tors donrsquot re ally un der stand

My re sponse was My first re ac tion is that each per son grieves in such a dif fer ent way you might have to just watch Chris to see how he needs to do this I per son ally am not a sup porter of the ldquotoughrdquo ap shyproach so soon af ter your loss What is Chrisrsquos com mu ni ca tion like Does he talk Sign Draw pic tures Is it just through be hav iors that you know how hersquos feel ing Is your re la tion ship such that you and he can just spend time to shygether do ing nor mal things Or can you sit with him in his room hold his hand just be with him cry with him Would it help to take out pic tures of your fa ther and look at them and re mem ber Talk Rem i nisce Give me more in for ma tion about how you two com mu ni cate and maybe I can be more help ful In the mean time make sure that YOU have sup ports for your self to help you through your griev ing Irsquove found that no mat ter what your re shyla tion ship was with your par ent mdash good bad or in dif fer ent mdash a par ent is a par ent and the loss is pro found Be gen tle on your self give your shyself time and al low your self to feel all of the feel shyings that are sure to bub ble up Feel ings are tough to deal with and talk about whether yoursquore deaf-blind or hear ing-sighted But talk ing about feel ings and deal ing with them are the key to heal ing any sit u a tion Yoursquore on your way

The m other re spond e d Thank you Thank you Itrsquos the first time where I have had some one to talk to and who un der-stands in 30 years (apart from fam ily and friends) Chris is to tally deaf and blind (he had a lit tle sight but lost it 10 years back) He is a pro fi shycient signer in New Zea land sign Australasian and [uses] the Amer i can al pha bet but [talk shying about] feel ings is a hard one Last night I enshyticed him out and we bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face To day he said he would come down and clean the bath so I thanked him a hun dred times and told him what a kind man he was We are go ing away for three days hop ing that makes Chris a lit tle hap pier

And later that week

Last night I sat with Chris and we talked about Grand fa ther mdash re mem ber ing this and that ndash and I told him those were the things to re memshyber him with [and] not to think about when he was in the hos pi tal (Chris was be side Dad when he passed away mdash what a com fort that must have been for Dad) Chris to pher also in shysisted he was go ing to [be a pall bearer for] Grand fa ther You have no idea how our fam ily is feel ing about this com mu ni ca tion we now have with you In our coun try we have very lit tle sup port Chris [is] one of a hand ful of to tally deaf-blind liv ing in the com mu nity (we had to fight the Gov ern ment when he was five not to have him put in an in sti tu tion) So a big thank you mdash for the first time I donrsquot feel so alone

Throug h the Helen Keller N a tional Cen ter we havea g roup of fam ily m em b ers pro fes sion a ls a ndd e a f-b lind a d ults who are in ter este d in top ics re shylate d to those with con g e n i ta l ru b ella syn d rom e W e put the ques tion of g riev ing a nd this spe cific ex a m shyple out to this g roup The re sponses were so help fuland sup port ive that we d e cid e d to share them withthe d e a f-b lind com m u nity at larg e W e hope thatthese share d in sig hts and ex pe ri ences will b e use fulto those who have yet to d e a l with this d if fi culttopic From a m other in N e w York

A lit tle over a year ago we lost five fam ily mem shybers in one month mdash my grand mother two un shycles a cousin and my brother whom [my daugh ter] was very close to mdash then her cat It was very hard to re ally know what she was feel shying She does nrsquot have tears and I never know if shersquos cry ing She would stay in her room sit ting in the chair [and] hold ing a stuffed an i mal to re shyplace the cat or she was in the bed asleep The staff [at the cen ter she at tends] was very help ful be cause she was able to com mu ni cate what she was feel ing to some one there I still am not sure how she is deal ing with griev ing but she seems to be do ing all right As a mother I want to fix ev ery thing but I canrsquot I need all the help I can get

From a pro fes sional in Mas sa chu setts One of my stu dents who is deaf-blind lost her fa ther last fall We rec om mended cre at ing a vi shysual sched ule of events (wake ser vice fu neral pic tures of rel a tives who will be at tend ing the events etc) for the days just af ter the death The mother also dis cussed the death and all the events with her and [put to gether] a photo al shybum [for her daugh ter to bring back to her pro shygram] Her mother said that our rec om men da tions were help ful and that the daugh ter was deal ing quite well with her griev shying The daugh ter was back to her reg u lar

8

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

sched ule on the third day and she was fine with it Keeping busy and get ting up and around is an im por tant part of a griev ing pro cess Hav ing reg u lar sched uled events re lated to the fam ily mem ber who has passed away is also im porshytant (spe cial church re lated me mo rial ac tiv i ties grave vis its con ver sa tions that are sup ported by vi sual or tac tile aids small fam ily cer e moshynies ac cord ing with the fam ily tra di tions etc) Talking is help ful but [some] deaf-blind peo ple need con crete ob jects and spe cific ac tions to sup port them in their grief

What kind of sup port is the mother get ting at this point She has lost her fa ther and she is go ing through a rough time her self She has my sym pa thy and I hope that she is tak ing care of her self too

From a pro fes sional in Texas Per sonally I donrsquot trust lan guage too much on this stuff Dem on strating the rit u als that we pur sue is where you get started Who knows what each in di vid ual soaks up from these tra dishytions Much of this is in di vid u ally tai lored even in our hear ing-sighted world Much inshystruc tion about death is learned through ob sershyva tion of daily life and for chil dren it of ten be gins with the pass ing of a pet When I was young we kids with no sug ges tions or in volveshyment by my par ents had fu neral cer e mo nies for our pets com plete with lit tle crosses which sym bol ized to us the pro tec tion of the spir i tual world Did we know what the crosses meant Not re ally But the pur pose was served I think that hav ing a deaf-blind per son take part in some as pect of the rit u als of their fam ily is what brings them into the ex pe ri ence It is up to each fam ily to cre atively find the best way to beshycome part of the ex pe ri ence Par tic i pa tion in the rit ual is not just for the per son but for ev shyery one con nected to the per son Death enshygages us in an ex pe ri ence of close ness with com mu nity Since lan guage is so in ad e quate we pre scribe rit u als to help us ex pe ri ence (cel eshybrate) the needed com mu nion of our lives

I won der about the han dling of ob jects which the per son used I per son ally have such obshyjects which I keep in a per sonal ldquoshrinerdquo Pershyhaps it would be pos si ble to place such ob jects in a mem ory box that could be vis ited to re mind the per son of the in di vid ual they lost They may be able to re late this to mem ory boxes etc that they have about places they have been

From a pro fes sional in N ewYork There is no rea son why a per son with deaf-blindness will not ex pe ri ence loss as pro shyfoundly as ev ery one else Some time ago Eliz shya beth Kubler-Ross out lined stages of grief It was once thought that ev ery one had to go

through those stages in or der Now years later we know that is not true and that there are other as pects of grief For a per son with lim shyited for mal lan guage the pro cess of ex plain ing what has hap pened and lis ten ing to their feel shyings can be com pli cated The im por tant part is to be there with them and lis ten empathically It is es pe cially im por tant that the fam ily and other sup port peo ple have a com mon un der stand ing of the lan guage they are us ing to ex plain what has hap pened For ex am ple has the grand fashyther ldquodiedrdquo ldquogone to heavenrdquo etc It would also be im por tant es pe cially when the deaf-blind per son has had a close re la tion ship with the one who has died to try to un der stand if they feel in any way re spon si ble or if they have any un fin ished busi ness As far as how long to al low them to be deshypressed idle sleep etc rec og niz ing the feel shyings of sad ness does not mean wal low ing in it or al low ing it to in ter fere with the qual ity of the in di vid ualrsquos life It would be im por tant for the other fam ily mem bers and sup port peo ple to en cour age good nu tri tion and ac tiv ity short walks or fa vor ite out ings etc while still acshyknowl edg ing that ev ery one is sad for their loss Some times griev ing peo ple feel that hav ing fun is a be trayal to their loved one Time heals but there is no set amount of time Also all those feel ings will emerge at dif fer ent times and be trig gered by dif fer ent events places and peo shyple It sounds to me like this young man is very lucky to have such a sen si tive and car ing mother who is con cerned about him while griev ing hershyself I com mend her

From a par ent in W a sh ing ton State I have been think ing about the sev eral deaths in our fam ily and try ing to re call my daugh terrsquos re shyac tions The per son she was clos est with was my fa ther who died when she was six She at shytended res i den tial school then Dad died a week be fore school be gan so she was not with her fam ily in the weeks right af ter he died On the day he was bur ied we se lected a plant from the fu neral ser vice We took it to plant out side the win dow of her class room She helped plant it and tend it When a fam ily mem ber dies I have my daugh ter touch the de ceased to feel the dif fer ence in his or her body We talk about the things they have done to gether and that they wonrsquot be able to do that any lon ger We ac knowl edge that we are sad I have in cluded her in as many fu ner als and me mo rial ser vices as rea son able so that she has first hand knowl edge of the end of a loved per sonrsquos life She now un der stands the mean ing of death and knows that per son wonrsquot be there to do things with I donrsquot know if she

9

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

has ever grieved I think griev ing co mes from hav ing ex pec ta tions that canrsquot be ful filled I donrsquot think my daugh ter has ex pec ta tions of many peo ple Compared to oth ers of her age she has so lit tle con trol of her life that she fairly well ac cepts that which co mes an other one of those mixed bless ings that co mes from her con di tion I am con cerned that the mom soon al low her self to grieve for the loss of her fa ther We par ents have put the needs of our chil dren first for so long that we have be come very good at de ny ing our own needs I sug gest [that] she mark a day on the cal en dar make ar range ments for some shyone to care for Chris and clear the deck of other di ver sions Planning to spend time re flect ing on the joys and sor rows she ex pe ri enced with her fa ther will help her heal more quickly Grieving ig nored does not go away It waits and can de shymand to be dealt with at the most in op por tune time

From a m other in N orth Da kota There were many good re sponses so far that will be help ful to all of us My re sponse to this mom will be from a spir i tual point Our son is deaf-blind low-functioning re tarded age 35 He lacks pa tience and has scream ing and slap shyping be hav iors yet sits qui etly through an hour and a half church ser vice There have been many times when Irsquove had to ask the Lord to pre pare Jeff for a fu ture event as there was no way I could ex plain it to him Jeff has han dled many a sit u a tion as if some one had ex plained it to him Helen Keller said she had al ways known the Lord she just did nrsquot know his name I just wanted to re in force the im mense wis dom and help from our Heav enly Fa ther that passes hu shyman un der stand ing

From a fa m ily ther a pist in Cal i for nia On the topic of griev ing I find that all the re shysponses sent in so far are ex cel lent There has been much writ ten on the topic of be reave ment and many good books in the stores Adapting those ideas and con cepts to deaf-blindness is a chal lenge and all the re sponses have done so in a beau ti ful way Grief is a nat u ral re sponse to loss of any kind I would be [sus pi cious] if there were no grief re shysponses from this young man who has lost a grand fa ther His mother is also griev ing and her ac tiv i ties (de scribed in her re sponses) with her son are ex actly what they both need at this time Both mother and son will find it hard in the beshygin ning to de fine their feel ing via lan guage and that is all right It will come later mdash just be ing there phys i cally and shar ing with each other qui etly will help ease the pain and con fu sion There is no time limit to be set on eas ing out of griev ing Con tinuing the ac tiv i ties that have

been started be tween mother and son as well as some of the other sug ges tions will even tu ally lead to res o lu tion

From a m other in Mis souri My sonrsquos fa ther died Oc to ber 1999 A staff mem ber who was a very in tu itive young man took Paul to see his dad an hour be fore he passed Paul felt his face and held his hand The young man ob served the very dif fer ent ex shypres sions that were oc cur ring on Paulrsquos face and said that on some level Paul knew what was hap pen ing Per haps if there is a fa vor ite ob ject from the Grand fa ther the young man could keep that as a re mem brance That might help

And from an other m other in Mich i g a n Af ter read ing the re sponses on griev ing I de shycided to add our ex pe ri ence [My daugh terrsquos] fashyther had been ill for many years He was di ag nosed with mul ti ple scle ro sis in 1976 For years he was on a scooter which she ac cepted as part of Dad Later when the hos pi tal bed be shycame a liv ing room fix ture she knew Dad was there She would walk over to him [give him a] big smile and shake lit tle fin gers as her greet shying When he was hos pi tal ized shersquod feel the empty bed but be all smiles when he came home He passed away at home in April of 1999 We showed her his body had her feel his face told her ldquoDaddy bye-byerdquo We took her to vis i ta tion showed her dad again say ing ldquoDaddy bye-byerdquo Now we did nrsquot know how this would reg is ter with her but the next morn ing when she came into the liv ing room and the hos pi tal bed was gone she started to sob I have never be fore or since heard her sob that hard and long Some thing cer tainly clicked that morn ing and her sib lings were amazed that she re acted that way How ever [there have been] no more re acshytions and no ob jec tions to go ing back to her proshygram As Irsquove learned we all grieve in our own way and our own time We were all feel ing sad and she prob a bly had ex tra hugs from all of us

And so d e ar re a d ers wersquove le arne d that g riev ing is g riev ing whether yoursquore d e a f and b lind or sig hteda nd he ar ing Ev ery one d oes it in their own way intheir own tim e There are thing s that can b e d one tohelp the pro cess along to m ake it m ore prac ti cal a nd re al but ul ti m ately d e ath a nd loss m e a n d if fer entthings to d if fer ent peo ple Som e of us ne e d m orehug soth ers ne e d m ore spac e Som e of us want to re shym e m b e roth ers wa nt to for g et But we a ll ne e d to b e

10

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

re specte d and a l lowed to g rieve in our own uniqueway

Congenital Rub ella Synd rom eDiscussion List

This d is cus sion list has b e e n es ta b lished as a ve shyhi cle for par ents con sum ers and pro fes sion alsto share in for m a tion a b out any as pect of ru b ellaa nd to pro vid e sup port to those liv ing or work shying with som e one with con g en i tal ru b e lla syn shyd rom e If you are al re a d y re g is tere d with Ya hoo-g roups you c an sub scrib e by send ing a b la nk e m a il toHKN C_Ru b e lla-sub scrib e yahoog roupscom If you are not reg is tere d with Ya hoo-groups g o to httpwwwyahoog roupscom re g is ter For as sis ta nce con tact the owner at HKN C_Rushyb e lla -owne ryahoog roupscom or N a ncy OrsquoDonnell at HKRe g istryaolcom

Personal PerspectivesPe g g y M a lloy

ldquoPer sona l Per spe c tivesrdquo is a col um n a b outd e a f-b lind peo ple their fam i lies friend s and thepeo ple who work with them This is sue fe a tures Corrina Ve esart a nine te en-ye ar-old wom a n who is d e a f-b lind a nd her m other Pe arl Corrina a nd Pearllive in Los Osos a sm all com m u nity lo cated along the cen tra l coast of Ca l i for nia Pe arl a lso has a sonRyland who is sev en teen Corrina re cently g ra d u shyate d from hig h school Pe arl works as a pro fes sionalg a r d ener a nd la nd scaper I talke d to Pe arl a ndCorrina a b out Corrinarsquos e d u ca tional ex pe ri ences her plans for the fu ture and their feel ing s a b out ser vicesfor d e a f-b lind peo ple Pe arl first no ticed that Corrina ha d d if fi culty see ingand he ar ing when Corrina was very young The cause of her d e a f-b lind ness has never b e en d i a g shynosed al thoug h she has b e e n eva l u ate d b y nu m er shyous spe cial ists Ini tially her he ar ing loss was b e lieved to b e d ue to cen tral au d i tory pro cess ing d is or d er butshe was found to b e d e a f when she was eig ht ye arsold Both her he ar ing a nd vi sion loss have b e e n pro shyg res sive Pe arl says that ob tain ing the ed u ca tional ser vicesCorrina ne e d e d wa s of te n a strug g le d ur ingCorrinarsquos school ye ars She le arne d to b e an e f fec tivea d vo c ate by e d u cat ing her self in ar e as of spe cial e d u shyca tion law and is sues per ti nent to d e a f-b lind ness She has found the net work of re sources and pro fes sion als

within the field of d e a f-b lind ness to b e in valu a b lea nd b e lieves that com bin ing knowl ed g e a bout thelaw with those re sources can b e a po tent m e ans of a c shycess ing a nd cre at ing qual ity ser vices In this m an nershe was a b le to ob tain ser vices for Corrina in highschool that in clud e d a spe cial e d u ca tion teacher withex pe ri enc e and train ing in d e a f-blind ness in ter pret shyers Braille and ori en ta tion and m o b il ity in struc torstech ni cal as sis tance and train ing for spe cific pro g ra m ne e ds and in clu sion in typ i cal class room s Pe arlpoints out that al thoug h spe cial ed u ca tion laws haveex isted for m any ye ars they arenrsquot al ways im ple shym ente d She b e lieves that it is im por tant for peo plecol lec tively a nd as in d i vid u als to stand up for theirspe cial e d u c a tion rig hts in or d er for the im ple m en ta shytion of those rig hts to be com e com m on place Pe arl says that her on g o ing en coun ters with the e d u shyca tional sys te m had an im pact on her own per son al shyity Al thoug h she use d to b e very shy and e as ilyin tim i d ate d by ed u cat ing her self and b e ing sup shyported b y var i ous pro fes sion als she b e c a m e em pow shyered and b e g an to fe el m ore con fi d ent and as ser tiveShe says that she found her own voice in the pro cessof a d vo cat ing for Corrina and b roke throug h b ar ri ersin her self She b e c am e a he alth ier and m ore c a pa b leper son Corrina is b oth ex cited and over whelm e d at the pros shypect of transitioning from school to col le g e and a newlife She ech oes her m otherrsquos as sess m ent of her school ye ars when it was of ten d if fi cult to g et what shene e d e d She says that she is ldquosick of all the m e et ing srdquo as so ci ate d with g et ting ser vices and would rather b ein volved in m ore nor m al teen a g e a c tiv i ties Corrina can he ar an oc ca sional loud sound but notspe e ch She also has som e vi sion She c an se e a lit tleup close (within five to six inches of her fac e ) b ut b e shyyond that thing s are blurry She says ldquoI can seeshapes fur ther away a nd of ten can id en tify them if Ial rea d y have an id e a what they are From m y win shyd ow there are two tre es in the front yard I can see thetrunk I can see up to where the leaves are but I canrsquotm ake out d e tails Sup pose a bird or a bird rsquos nest is inthe tree I canrsquot tell that un less som e one tells m erdquo Corrina m ostly uses her vi sion to see sig n lan g ua g eb ut says that her eyes g et very tired She feels that hervi sion is g et ting worse and she is shift ing to tac tilesig n lan g ua g e Corrina plans to g o to ju nior col le g e b ut is tak ing ab re ak from school this fall se m es ter and work ing in shyste a d She has a part-tim e job as a tea cherrsquos aid e in afirst gra d e class She loves chil d ren es pe cially b a b ies She mig ht b e in ter ested in a ca reer that in volveswork ing with chil d ren but she has nu m er ous in ter shyests and at this point in tim e d oes nrsquot know what typeof c a reer she will pur sue In hig h school she en joyed

11

Fall 2001

m any sub jects in clud ing Eng lish sci ence and artShe was also a che er lea d er for two ye ars Corrina loves to re a d and d oes so us ing Braille andlarg e print with a m a g ni fier She also likes b a l let a er shyo b ics and a l thoug h she canrsquot hear very well she en shyjoys m u sic if shersquos a b le to b e in clud e d throug h touchShe has friend s who are m u si cians They let her feeltheir throats and in stru m ents when they play andsing Dur ing this past sum m er she took a lot of d ancea nd ex er cise classes hung out with her friend s wentto visit her d ad in Alaska and at tend e d the Se at tleLig ht house for the Blind d e a f-b lind re treat Corrina says that m ore than any thing she wantsspace and in d e pend ence She says that she c an d o alot al re a d y but nee d s to le arn m ore skills like house shyke ep ing food shop ping and trav el ing a lone Shewants to b e as in d e pend ent as pos si b le but says thatshe fe els frus trated b e cause ldquoIt se em s to b e hap pen shying so slowly and I fe el penne d up I still nee d to le arnso m uchrdquo I asked Pe arl and Corrina a b out the cur rent state ofd e a f-b lind ser vices and what they think is im por tantfor the fu ture Both told m e that ac cess to in ter pret erswho have the ed u ca tion and ex pe ri ence nec es sary toin ter pret for d e a f-b lind peo ple is very im por tantThey b e lieve that in ter pret ers for d e a f-b lind peo pleshould re ceive spe cial ized train ing a nd rec og ni tion Pe arl ha d a num b er of a d d i tional ob ser va tions andsug g e s tions She said that hig h-quality as sess m entsare crit i cal b e cause they d e ter m ine the types of e d u shyca tional ser vices that chil d ren re ceive She b e lievesthat as sess m ents should b e per form e d b y peo plewith ex per tise in d e a f-b lind ness and that par entshave a m e an ing ful role in the as sess m ent pro cess She would like to see qual ity op tions for as sess m ent andtrain ing avail ab le in lo ca l com m u ni ties and says thatit is es sen tial to m ain tain fund ing of pro g ram s and re shysearch d e d i cate d to the d e a f-b lind pop u la tion Pe arl said that while she is g rate ful for the ser vicesthat are cur rently avail ab le she b e lieves that there isstill m uch to d o to im prove the qual ity of life ford e a f-b lind peo ple She says that there need s to b e ab a l anc e b e tween g rat i tud e and ac knowl e d g m e nt forwhat the d e a f-b lind com m u nity has and con tin uede f forts to strive for som e thing m ore She also saysldquoDeaf-b lind peo ple should have a life with the kindof choices and op por tu ni ties that any of us haveThatrsquos what Corrina and I are he a d ing forrdquo

N ational Parent ConferenceReport

Kathy McN ulty O n Au g ust 2-4 2001 in Mi am i Florid a a g ath er shying of ne arly 150 par ents from the Unite d States a ndLatin Am er ica at tend e d An In ter na tional Cel e bra tionof Em pow er m ent Sharing Dream s and Vi sions for Children and Young Ad ults W ho Are Deaf-Blind spon shysore d b y the N a tional Tech ni c al As sis ta nce Con sor shytium for Child ren a nd Young Ad ults W ho AreDe a f-Blind (N TAC) a long with the N a tiona l Fa m ilyAs so c i a tion for De a f-Blind (N FADB) theHiltonPerkins In ter na tiona l Pro g ra m a nd Foun d a shytion O N CE (Org a niza cioacuten N a c iona l d e Cie g osEspantildeoles) The work shop of fere d a unique op por tu nity for par shyents and fam ily m em b ers from the United States toex cha ng e per spe c tives on e m pow e r m e nt a ndself-d eterm ination with par ents and fa m i lies fromfour te en Latin Am er i ca n coun tries W ork shop ac shytiv i ties were d e sig ne d to en hance the ca pa c ity ofpar tic i pa nts to d is cover and ful fill the d re am s oftheir chil d ren and other fa m ily m em b ers Throug h out the two-a nd -a-half d a ys of the m e et ing par ent and d e a f-b lind pre sent ers from both he m i shyspheres shared sto ries a b out m a k ing their d re a mscom e true the crit i cal ne e d for per son-centeredplan ning a nd strong col la b o ra tive part ners as wellas a b out the im por tance of b al anc ing the child rsquosd re a m within the con text of the fa m ilyrsquos d re am De spite the d if fe r e nces in cul tures and b a c k shyg round s par ents quickly con necte d with one an shyother un d er stood e a ch otherrsquos prob lem s and fe arsd e lig hte d in one an otherrsquos suc cesses a nd a chieve shym ents and rec og nize d that par ents share a uni ver shysal per spec tive when it co m es to d re am ing for theirchil d ren who are d e a f-b lind

12

For Your LibraryChild Guid e d Strat egies for As sessing Child renwho are Deafb lind or Have Mul ti ple Dis a bil ities(CD-ROM )van Dijk Jan amp Nel son Ca thy 2001 A CD-ROM that d em on strates as sess m ent tech shyniques d e vel oped b y Dr Ja n van Dijk In clud es ap shyprox i m ately 40 vid oclips of d e a f-b lind chil d ren b e twe en two and seven ye ars of a g e The CD-ROMis in ter ac tive al low ing the viewer to test his or herknowl e d g e of a sub ject The cost is $5000 Profitswill g o into a fund to fi na nce the pro d uc tion of sim i shylar m a te ri als in the fu ture Dr van Dijk says US or shyd ers ca n b e sent in care of his brother-in-law Mr JoeFra nken 4619 Spy g lass Drive Dal las TX 75287Make the check pay a b le to Mr Joe Fra nken Dr vanDijkrsquos e-m ail is jvd ijkivd nl

Col lec tive Wis d om An An thol ogy of Stories and Best Prac tices for Ed ucating Stu d ents with Se vereDis ab il ities and Deaf-b lind nessKan sas State De shypart m ent of Edu ca tion 2001A col le c tion of writ ing s b y peo ple who have b e e n in shyvolved in the lives of chil d ren and young a d ultswith se vere dis a b il i ties a nd d e a f-b lind ness Topics in clud e self-d e term ination col la b o ra tion assistivetech nol og y and pos i tive b e hav iora l sup ports Avail shya b le from Jeff Cook Ka n sas Pro ject for Child renand Young Ad ults Who Are De a f-Blind Ka n sasState De part m e nt of Ed u c a tion 120 SE 10th AveTo peka KS 66612-1182 TTY 785-296-0917 E-m ail jcookksd eorg

Com pe tencies for Paraprofessionals W orkingWith Learners who are Deafb lind in Early In ter shyven tion and Ed u ca tional Set tingsRig g io Marianne amp McLetchie Barb ara AB W atertown MA Perkins School for the Blind 2001These com pe ten cies ad d ress the knowl e d g e andskills that a paraprofessional m ust have in or d er toas sist in im ple m ent ing qua l ity pro g ra ms and en shyha nce the qua l ity of life for le arn ers who ared e a f-b lind The cost is $500 Ava il a b le from Pub licRe la tions a nd Pub li ca tions De part m ent PerkinsSchool for the Blind 175 N Bea con St W atertown MA 02472 Phone 617-972-7328

Fall 2001

The Ed u ca tion of Laura Brid g m a n First Deaf and Blind Per son to Learn Lan guageFreeb erg Er nestCam brid g e H ar vard Uni ver sity Press 2001The Im prisone d Guest Sam uel Howe and LauraBrid gm an the Orig i nal Deaf-Blind GirlGitter Elis a beth N ew York Farrar Straus and Giroux 2001Two b i og ra phies of Laura Brid g m a n were re centlypub lishe d Laura Brid g m a n was a d e a f-b lindwom a n who was b orn in 1829 a nd lost b oth her sig ht and he ar ing d ue to scar let fe ver at the ag e of twoShe b e g a n at tend ing the Perkins School for the Blind at the a g e of seven where she was ed u cate d un d erthe di rec tion of Sam uel Howe Both b ooks d e scrib eher life in clud ing her ed u ca tion her com plex re la shytion ship with Howe in the con text of the rapid so cialand cul tural chang es that were oc cur ring in 19th-c en shytury Boston Avail a b le throug h b ook stores

Fo cused O n So cial Skills (Vid eo)W olffe Ka ren E (Ed) amp Sacks Sharon Zell (Ed) New York AFB Press 2000FO CUS (Full Op tion Cur ric u lum for the Uti li za tionof So cial Skills) con sists of five m od ules re late d tohelp ing chil d ren who are vi su a lly im paired d e velop so cial skills Each set con tains a vid eo tape andself-d irecte d stud y g uid e In d i vid ua l ti tles Im por shytance and Ne e d for So cial SkillsAs sess m ent Tech niquesTeaching So cial Skills to Vi sually Im paired Pre SchoolersTeaching So cial Skills to Vi sually Im paired El e m en tary Stu d entsSo cial Skills for Teens and Young Adults with Vi sual Im pair m ents Each set costs $5995 Avail a b lefrom AFB Press Cus tom er Ser vice PO Box 1020 Sewickley PA 15143 Phone 800-232-3044 W e bsite httpwwwa fb org a fb _pressasp

In for m a tion Packet for N ew TeachersMonm outh OR DB-LINK 2001This packet of in for m a tion was d e vel oped for par shyents to pass on to their chil d renrsquos te a ch ers (or forte a ch ers to re quest them selves) It in clud es fa ctshe ets news let ters lists of ar ti cles a b out com m u ni shyc a tion cur ric ula a nd e n vi ron m en ta l con sid er shyations and a bro chure and a r ti cle that d e scrib eDB-LIN K ser vices Avail a b le from DB-LINK Phone 800-438-9376 TTY 800-854-7103 Em ail d b linktrwoued uW e b site httpwwwtrwoue d ud b link `

13

For Your LibraryChild Guid e d Strat egies for As sessing Child renwho are Deafb lind or Have Mul ti ple Dis a bil ities(CD-ROM )van Dijk Jan amp Nel son Ca thy 2001 A CD-ROM that d em on strates as sess m ent tech shyniques d e vel oped b y Dr Ja n van Dijk In clud es ap shyprox i m ately 40 vid oclips of d e a f-b lind chil d ren b e twe en two and seven ye ars of a g e The CD-ROMis in ter ac tive al low ing the viewer to test his or herknowl e d g e of a sub ject The cost is $5000 Profitswill g o into a fund to fi na nce the pro d uc tion of sim i shylar m a te ri als in the fu ture Dr van Dijk says US or shyd ers ca n b e sent in care of his brother-in-law Mr JoeFra nken 4619 Spy g lass Drive Dal las TX 75287Make the check pay a b le to Mr Joe Fra nken Dr vanDijkrsquos e-m ail is jvd ijkivd nl

Col lec tive Wis d om An An thol ogy of Stories and Best Prac tices for Ed ucating Stu d ents with Se vereDis ab il ities and Deaf-b lind nessKan sas State De shypart m ent of Edu ca tion 2001A col le c tion of writ ing s b y peo ple who have b e e n in shyvolved in the lives of chil d ren and young a d ultswith se vere dis a b il i ties a nd d e a f-b lind ness Topics in clud e self-d e term ination col la b o ra tion assistivetech nol og y and pos i tive b e hav iora l sup ports Avail shya b le from Jeff Cook Ka n sas Pro ject for Child renand Young Ad ults Who Are De a f-Blind Ka n sasState De part m e nt of Ed u c a tion 120 SE 10th AveTo peka KS 66612-1182 TTY 785-296-0917 E-m ail jcookksd eorg

Com pe tencies for Paraprofessionals W orkingWith Learners who are Deafb lind in Early In ter shyven tion and Ed u ca tional Set tingsRig g io Marianne amp McLetchie Barb ara AB W atertown MA Perkins School for the Blind 2001These com pe ten cies ad d ress the knowl e d g e andskills that a paraprofessional m ust have in or d er toas sist in im ple m ent ing qua l ity pro g ra ms and en shyha nce the qua l ity of life for le arn ers who ared e a f-b lind The cost is $500 Ava il a b le from Pub licRe la tions a nd Pub li ca tions De part m ent PerkinsSchool for the Blind 175 N Bea con St W atertown MA 02472 Phone 617-972-7328

Fall 2001

The Ed u ca tion of Laura Brid g m a n First Deaf and Blind Per son to Learn Lan guageFreeb erg Er nestCam brid g e H ar vard Uni ver sity Press 2001The Im prisone d Guest Sam uel Howe and LauraBrid gm an the Orig i nal Deaf-Blind GirlGitter Elis a beth N ew York Farrar Straus and Giroux 2001Two b i og ra phies of Laura Brid g m a n were re centlypub lishe d Laura Brid g m a n was a d e a f-b lindwom a n who was b orn in 1829 a nd lost b oth her sig ht and he ar ing d ue to scar let fe ver at the ag e of twoShe b e g a n at tend ing the Perkins School for the Blind at the a g e of seven where she was ed u cate d un d erthe di rec tion of Sam uel Howe Both b ooks d e scrib eher life in clud ing her ed u ca tion her com plex re la shytion ship with Howe in the con text of the rapid so cialand cul tural chang es that were oc cur ring in 19th-c en shytury Boston Avail a b le throug h b ook stores

Fo cused O n So cial Skills (Vid eo)W olffe Ka ren E (Ed) amp Sacks Sharon Zell (Ed) New York AFB Press 2000FO CUS (Full Op tion Cur ric u lum for the Uti li za tionof So cial Skills) con sists of five m od ules re late d tohelp ing chil d ren who are vi su a lly im paired d e velop so cial skills Each set con tains a vid eo tape andself-d irecte d stud y g uid e In d i vid ua l ti tles Im por shytance and Ne e d for So cial SkillsAs sess m ent Tech niquesTeaching So cial Skills to Vi sually Im paired Pre SchoolersTeaching So cial Skills to Vi sually Im paired El e m en tary Stu d entsSo cial Skills for Teens and Young Adults with Vi sual Im pair m ents Each set costs $5995 Avail a b lefrom AFB Press Cus tom er Ser vice PO Box 1020 Sewickley PA 15143 Phone 800-232-3044 W e bsite httpwwwa fb org a fb _pressasp

In for m a tion Packet for N ew TeachersMonm outh OR DB-LINK 2001This packet of in for m a tion was d e vel oped for par shyents to pass on to their chil d renrsquos te a ch ers (or forte a ch ers to re quest them selves) It in clud es fa ctshe ets news let ters lists of ar ti cles a b out com m u ni shyc a tion cur ric ula a nd e n vi ron m en ta l con sid er shyations and a bro chure and a r ti cle that d e scrib eDB-LIN K ser vices Avail a b le from DB-LINK Phone 800-438-9376 TTY 800-854-7103 Em ail d b linktrwoued uW e b site httpwwwtrwoue d ud b link `

13

Fall 2001

In tro d uc tion to Sex u al ity Ed u ca tion for In d i vid shyuals Who Are Deaf-Blind and Sig nif i cantly De vel shyop m entally De layedMoss Kate amp Blaha Robbie Monm outh OR DB-LINK 2001A b ook for par e nts a nd pro fes sion als this new textof fers in for m a tion a nd in struc tiona l g uid ance ford e liv er ing sex e d u ca tion to d e a f-b lind stu d ents who a lso ha ve c og ni tive d is a b il i tie s Is sue s ofself-expression re late d to g en d er id en tity m od estyand a p pro pri ate touch are d is cussed Spe cific in shystruc tion is in clud e d for m en stru a tion m as tur b a shytion hy g iene he alth and sex ual a b use Avail a b le on the w e b or b y c on ta c t ing DB-LIN K Phone 800-438-9376 TTY 800-854-7103 E-m ail d b linktrwoue d uW e bsite httpwwwtrwoue d ud b link

N a tional Tran si tion Fol low-Up Stud y of YouthId en tifie d as De a fb lind Par e nt Per spec tives(N TAC Brief ing Pa per)Petroff Jerry G Monm outhOR The Na tional Tech ni cal As sis tance Con sor tium forChildren and Young Adults who are Deaf-Blind 2001This pa per d e scrib es the re sults of a stud y that sur shyveye d par ents of d e a f-b lind youth (a g e 18-24) whoha d al re a d y left school to find out a b out their chil shyd renrsquos post-school ex pe ri ences re lat ing to e d u ca shytion e m ploy m e nt liv ing a r ra ng e m e nts a ndcom m u nity in volve m e nt Avail a b le on the we b(httpwwwtrwoue dunta cpub li ca tionshtm ) or b y con ta ct ing DB-LIN K Phone 800-438-9376 TTY 800-854-7013 E-m ail d b linktrwoued u

R e se a rch to R e a l Life In no va tions inDeaf-Blind nessLeslie Gail (Ed) Monm outh OR DB-LINK 2001Re search to Rea l Life pres ents snap shots of eig ht re shyse arch-to-pra ctic e pro je cts on d e a f-b lind ness Thepro jects in clud e d re search in e arly in ter ven tion as shysess m ent e d u c a tion in clu sion com m u ni c a tionte ch nol og y b e ha v ior a nd self-d eterm ina tion Ava il a b le from DB-LIN K Phone 800-438-9376 TTY 800-854-7013 E-m a il d b linktrwoue d u W e bsite httpwwwtrwoue d ud b link

Who Cares Ac cess to Healthcare for Deafb lind Peo pleSense and Deafblind UK 2001This re port is b ase d on a m a jor na tiona l sur vey in the U nited King d om of d e a f-b lind peo plersquos ex pe ri encesof he alth care It out lines a c tions re quire d to en surefull and equal ac c ess to he alth c are for d e a f-b lind peo ple Avail a b le on the web athttpwwwsenseorg ukcam paig nshe althhtm l

Announcem ents Call for Art Work

The Helen Keller In ter na tiona l Art Show spon soredb y the Coun cil for Ex cep tional Child ren Di vi sion onVi sual Im pair m ents a nd the Uni ver sity of Al a b a m aat Bir m ing ha m Vi sion Sci enc e Re se arch Cen ter in shyvites youth who d e a f-b lind b lind or vi su ally im shypaired to sub m it art work Stu d ents m ay se le ct thepre ferred art m e d ium The con test is open to stu shyd ents of a ll a g es Art m ust b e sub m it ted by Fe b ru ary 1 2002 The win shyning en tries will b e ex hib ite d b e g in ning with theCEC In ter na tiona l Con fer enc e in N e w York CityApril of 2002 For m ore in for m a tion a nd to ob ta inen try form s con tact UAB Vi sion Sci ence Re se archCen ter Phone 866-975-0624 Fax 205-934-6722 E-m ail Msanspreeicareoptua be d u

N ational Fed eration for the Blind Deaf-Blind Division

The NFB De a f-Blind Di vi sion is an or g a ni za tion of d e a f-b lind per sons work ing na tion ally to im proveser vices train ing and in d e pend e nc e for d e a f-b lindpeo ple They of fer per sona l con ta ct with otherd e a f-b lind in d i vid u als knowl e d g e a b le in a d vo ca cye d u ca tion e m ploy m ent tech nol og y d is crim i na shytion and other is sues sur round ing d e a f-b lind nessFor m ore in for m a tion visit the w e b site athttpwwwnfb -d b org or con tact Jo seph B N a ulty Pres i d ent561-753-4700jb naultya d elphianet

Kim b erley John son Tre a surerCol o ra d o Ce n ter for the Blind2233 W est Shepperd Av e nueLittle ton Col o ra d o 80120303-778-1130 (ext 212)e clipseinterfold com

14

Fall 2001

Conferences The Active Learning Approach

An Educational Approach Facilitating Developmentand Learning in Children with Multiple Disabilities

Presented by Lilli Nielsen PhDNovember 12-14 2001Los Angeles California

The phi los o phy be hind the ac tive learn ing ap proach is that if given an op por tu nity to learn from ex plo ra tion and ex am ishyna tion a child can be come an in de pend ent ac tive learner This con fer ence spon sored by the In fant De vel op ment As shyso ci a tion of Cal i for nia in co op er a tion with WestEd Cen ter for Pre ven tion and Early In ter ven tion will in clude in for mashytion about ac tive learn ing tech niques mod i fi ca tions to the learn ing en vi ron ment and an in tro duc tion to per cep tual aid equip ment Par tic i pants will learn how to give chil dren op shypor tu ni ties to help them de velop ba sic skills in spa tial re lashytions mo tor de vel op ment and emo tional and cog ni tive de vel op ment Fam ily mem bers and all early child hood pro shyfes sional dis ci plines are en cour aged to at tend

Contact In fant De vel op ment As so ci a tion of Cal i for niaPhone 916-453-8801 Em ail idaofcalsoftcomnet

Eighth Annual Regional Conferences on ImprovingAmericarsquos Schools

Three re g ional con fer ences b y the US De part m ent ofEd u ca tion are sched uled for the Fall of 2001 One hasal rea d y taken place but there will b e one in Reno N e shyva d a N o vem b er 13-15 and an other in San An to nioTexas De cem b er 17-19 Goals for the con fer ences in shyclud e m ak ing it pos si b le for par tic i pants to g ain an un shyd er stand ing of the De part m entrsquos new pri or i ties andini tia tives learn a b out the lat est re search and d ata re shyceive in for m a tion a b out fund ing op por tu ni ties andin ter act and share id e as with De part m en tal staff Con tactUS De part m ent of Ed u ca tionW a sh ing ton DC 20202-6100Phone 800-203-5494W e b site httpwwwncb e g wued uiasconferences E-m ail ias_ con fer enceed g ov

2001 TASH Conference Im aging the Future N ovem b er 14-17 2001Anaheim California

The TASH con fer ence will in clud e m ore tha n 300ses sions on is sues that af fe ct the lives of peo ple withd is a bil i ties with a par tic u lar fo cus on those whohave se vere or m ul ti ple d is a b il i ties Panels of pre shy

sent ers in clud e peo ple with d is ab il i ties par ents e d shyu c a tors re se arch ers and d i rect sup port pro fes sion shyals There will a lso b e ex hib its by rep re sen ta tives ofm any of the lea d ing d is a b il ity-relate d m an u fa c tur shyers pub lish ers and sup pli ers Con tactKelly N el son29 W Susquehanna Ave Suite 210Bal ti m ore MD 21204 Phone 800-482-8278 ext 105Em ail knelsontashorgW e b site httpwwwtashorg

Zero to Three 16th N ational Training InstituteN ove m b er 30-Decem b er 2 2001

San Diego California The N a tiona l Training In sti tute is d e sig ne d to chal shyleng e par tic i pants with new id e as and a p proachesto pro vid e an op por tu nity to form con nec tions withoth ers in the in fantfam ily field and to in spire prac shyti tio ners in their work with in fants tod d lers a ndtheir fam i lies A pre-Institute is sche d ule d for N o shyvem b er 29th Con tactMe et ing M a n a g e m ent Ser vicesZTT1201 N ew Jer sey Av e nue N WW a sh ing ton DC 20001Phone 202-624-1760W e b site httpwwwzerotothreeorg

Autism and Child ren with Visual Im pairm entWorkshop

Macon Georgia Fe bruary 14-15 2002

This work shop fe a tur ing M ar i lyn a nd Jay Gense isb e ing c o-sponsore d b y the Am er i c a n Print ingHouse for the Blind a nd the Geor g ia Acad em y forthe Blind Con tactsJanie Hum phriesThe Am er i c an Print ing House for the Blind IncPOBox 6085Lou is ville Ken tucky 40206-0085Phone 502-895-2405Em ail jhum phriesaphorg W e b site wwwaphorg M a rie Am ersonGeor g ia Ac a d em y for the Blind2895 Vineville AveMa con GA 31204Phone 478-751-6096E-m ail m a m ersonm ailg a b m aconorg

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I en joyed this issue of Dea f-Blind Per spec tives b ut I am not on your m ail ing listPle ase send fu ture is shysues to the ad d ress b e low Irsquove m ove d Ple ase send fu ture is sues of Dea f-Blind Per spec tivesto m y cur rent a d d ress Irsquom b ur ie d in in ter est ing pub li ca tions Ple ase re m ove m y nam e from your m ail ing list

N a m e _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _Ag ency _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ Street _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _City _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ State _ _ _ _ Zip_ _ _ _ _ _ _ _ _ _ _ _ _E-m a il _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ Com m ents_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

M ark appropriate cate g ories (3 m ax) Person or parent of person who is d isa b led Regular e ducation (non Spec-Ed ) Special e ducation (egteacheraid e) Therapist (egO TPTspeech) Ad m inistration (egDept of Ed project d irector) Teacher trainer Service provid er (egsocial workergroup hom e ) Governm ent personnel Technical assistance provid er Me dical professional Higher e ducation teacherresearcher O ther____________________________

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