coming together - fall 2013

inside

A National Family Leadership newsletter

An Ordinary Life for anExtraordinary Person . . . . . . . .2Bonnie Heath

A New Era . . . . . . . . . . . . . . . . . . .3Heather Simpson

Letting Go . . . . . . . . . . . . . . . . .4Roger Isnor

The Power of Networking . . . . .5Jo-Ann and Evan Spellman

To Inclusion and Beyond . . . . .6Bluesette Campbell

Are They Magnets? . . . . . . . . . .7Frances Petrowski

...to create changeFALL 2013

Coming Together is compiled andproduced by the CACL FamilyLeadership and VolunteerEngagement Advisory Committeeto highlight the power of familiesto effect change and advanceInclusion.

together

Message from Mary Whitehead, Chair

Being a parent of a child with anintellectual disability or otherexceptionalities brings it with

much joy and happiness. From andthrough our children we learn so verymuch about ourselves, about what istruly important in our lives, andindeed about the type of communityand society in which we live.

With that joy and happiness alsocome challenges. Challenges that areoften rooted, not in the particulardisability of our child, but in theattitudes of the system and society ingeneral. Even today, achieving fullinclusion – typical lives – for our sonsand daughters remains for many of usa constant struggle. And while thereare supports and services, and manyhelpful professionals, we know thatas parents, we are the real gateway toinclusion for our children.

In talking to other families, incollecting stories for this newsletterand in being part of the delivery ofour Family Leadership series ComingTogether to Create Change – Values,Vision, Action, we have re-discoveredthe power of ‘coming together’. Thepower and energy that comes fromhaving an ability to connect with andshare with other families whose life

experiences are similar to ours. Tocome together not to complain or benegative but to share and learn fromeach other, to have our values andvision both challenged and reaffirmed.To discover that a life of inclusion forour sons/daughters is not anunrealistic dream but rather a right ofbirth. To be able to tell our stories,not as part of an endless cycle ofassessments or to establish programeligibility, but simply to share andlearn from our commonalities. Torealize – to know – that we are notalone.

When families come together wequickly discover that our hopes andaspirations for our children withintellectual disabilities are not uniqueor unrealistic and indeed are the verysame aspirations we hold for all ourchildren – to grow up safe and securewithin a family, to attend school, tohave friends, to establish a lifeoutside the family home when theybecome an adult, to have a job, and tobe part of and participate in community.Is that really so much to ask?

In this edition we asked families whohad attended our Values Vision Actionworkshops to share their stories. Wethink you will enjoy.

The Power of ‘Coming Together’

comingcoming

2 Coming Together • Fall 2013

In March of 2012 I attended aweekend Leadership gettogether with the Canadian

Association for CommunityLiving and Community LivingOntario. It was a weekend forfamilies to get together fromOntario to discuss the familyrole in conjunction with theagency role. It was an amazingweekend and the group stillconnects through email.

At the end of the day the familyhas the ultimate responsibilityfor their child. But we need todream bigger and give ourchildren the gift ofindependence and citizenship.

My daughter, Jenny, is now 27years old. She has been part ofher community since birth. Shewent to her local school withher brother and sister. She waspart of the street gang, childrenplayed on the street, both girlsand boys running aroundplaying capture the flagthrough the backyards. Wewere lucky enough to live witha ravine in our backyard. Ourhouse was generally filled withchildren. She went to theregular parks and recreationprograms and I would usuallyhang around if she neededhelp.

By Jenny being part of theregular community she had tolearn what was acceptablesocial behaviour as did all the

rest of the kids. She alsolearned some unacceptablebehaviour and some words thatsecretly made us laugh. Herewas a kid who used acombination of sign, gestureand a few words, but could saythe “bad” words loud and clear.

As teenage years came, wedetoured from this path andfollowed the advice of manythat Jenny should now be in asegregated setting as it wouldbe safer for her as she was nowbecoming a young woman.

She went to a segregated highschool and I started searchingfor “programs” for her. Shegrew to hate school, and to thisday if you mention school, shewill tell you “school finished”.Her artistic side was put onhold for many years as she“hated crafts” – meaning if Icolour another easter bunny orsanta claus I am going toscream.

She seemed to be at a standstillor worse going backwards inher development. When schoolfinished, I found a day programfor her and after severalunsuccessful attempts withseveral programs, we realized itjust wasn’t working. She wasbecoming quite depressed anddidn’t want to go out or doanything. She had given up –which was totally unusual forher.

Bonnie and Jenny Heath

Luckily a volunteer opportunitycame up for her and with a lotof trepidation on my part, wedecided to try it. This startedour journey back to thecommunity and doing whateveryone else does.

When I went to the leadershipseries we were on the outskirtsof our community, on the cuspof being part of society, but stillholding back for fear that“something“ would happen, theWHAT IF that stops us fromdoing anything. So with ourhelp she shakily put her toeback into the neighbourhoodand decided to go with it.

We found a fabulous facilitatorwho has helped Jenny makeconnections and she now hasmore volunteer opportunities inher neighbourhood. We nowhave many, many eyes and earsout there to keep her safe andat times I have received phonecalls from the people who knowher to check if something is ok.She never would have had thatin a segregated day program!

Bonnie Heath lives in Toronto,Ontario and is the proud motherof three adult children, eachwith their own learningdifferences. She is also theequally proud grandmother oftwo beautiful grandchildren.

An Ordinary Life for anExtraordinary PersonBy Bonnie HeathOntario

Coming Together • Fall 2013 3

It dawned on me, not in agradual way as in the way thesun gently rises at day break,

but in the kind of way as if beinghit by a freight train. My heavythought: my nine year old sonhas never had a real friend. Myheart ached under the weight ofmy realization and I felt sickwith devastation. I was sitting inmy “Person-Centred Thinkingand Planning” course atDouglas College in September2012 and I remembered leavingthat day paralyzed with anguishand hurt for my son, frustrationand guilt towards myself and adeep sense of helplessness andisolation, crying the whole wayhome.

Rewinding to one year earlier, Iwas just entering a two-year fulltime diploma program inClassroom and CommunitySupport at Douglas College,hopeful and optimistic thateducating myself in philosophiesand best practices in humanservice would best make adifference in the quality of myson’s life, our family’s life andto understand firsthand, thefrustrations and grief that weface in our lives as we areconfronted with multiplechallenges; be it political,social, economic or systemicbarriers.

After our son was diagnosedwith autism and ADHD, our lifegot both easier, in the sensethat we finally felt somewhat ofrelief to have a betterunderstanding to the puzzling

complexities rearing our sonpresented. It also made life hardbecause we learned quickly thathaving a “label” of autism isfalse security and can in no way,truly prepare a family for thereality of supporting the uniqueand ever changing needs of anindividual with an exceptionalityand interfacing with a societythat, in large, views “disabilities”for its deficits and stereotypesand not for people as people;with the same rights andfreedoms as anyone.

In fall 2012, despite our bestefforts to create quality of life, Ifelt we as a family, were at rockbottom. We had no connections– no presence, belonging, orparticipation in community lifeand I realized that no book,journal article or IndividualizedEducation Plan can substitutefor creating a good, meaningfullife. I struggled against my owninsecurities that our family wasa burden; that I was asking fortoo much when I reached out toour family’s social worker andservice providers looking forhelp.

The turning point for our familycame after attending aworkshop titled “Values, Visionand Action” hosted inpartnership by CACL and BCACL(now Inclusion BC). Surroundedby families – mothers, fathers,and siblings who like us,expressed the challenges and

isolation they have felt in theirlives, assured my husband and Ithat we are not alone in battle,but that there are many familiesnow, and many who have comebefore us, that have been fightingfor the rights of loved ones livingwith diverse abilities. Thisworkshop was life changingbecause we met leaders incommunity living who arepassionate and dedicated toeducating and strengtheningfamily capacity to care andsupport their family member byconnecting families together,acknowledging and validatingeach other’s stories andcollectively envisioning a betterway forward. My husband and Iare no longer afraid to speak upand enter community lifeconfidently, knowing that it iseach of our family member’srightful place and that withouteach of us there, our communityis less then whole.

The Litschel-Simpson family livein beautiful Maple Ridge, BC.Whether playing a game of cardsin their home or out enjoying theirscenic community, this familyworks hard to live a life of truecitizenship and inclusion.

Dawn of a New EraHeather SimpsonBritish Columbia

Heather and Brayden


Robin is a 40-year-oldwoman who has untilrecently lived in remote

rural areas because of my job.We were fortunate when Robinstarted school in the late 70’sthat she had some veryprogressive thinking Principalsand teachers through most ofher school years. They did theirvery best to help Robin achieve her potential whichmeant that she was includedwith her peers whenever it wasa benefit to Robin. Privatetutoring was included in themix.

Robin went to a program atAcadia University to improveher fine motor skills called“Smile”. It was run by theuniversity and provided fourhours of intense one on one ortwo on one help once a weekfor most of the year. Sheattended this program forseveral years. This enabledRobin to improve so very muchin her ability to move aroundand enjoy her everyday life. Ibelieve that the university stillruns that program.

In high school Robin had formost of that time a wonderfulspecial education teacher whowas very concerned with thewell being of his students. Hemade sure that Robin waslearning where she was ablewith extra tutoring and buildinga schedule for her classes thatenabled her to achieve hermaximum potential. He kept intouch by phone for many yearsafter with her and other

students just to talk and seehow she was doing.

Robin had been at home waytoo long because Charlotte andI were very afraid to let go so tospeak because Robin was sovulnerable and we thought shewas not ready.

In 2009 through the NovaScotia Association forCommunity Living a PATH wasdone for Robin. It enabledRobin to think about a life awayfrom the family home. It helpedus to realize that we needed to move faster with her life plan toleave the family home. Throughour local ACL she beganprograms as well as in homeplans that would help her liveon her own. We also were ableto get some respite monies andRobin was able to spend sometime away from us and staywith her sister Vanessa. All of this helped prepare Robin forher move.

I have for many years worked asa volunteer with the communityliving movement locally,provincially and nationally as away to help make life better forRobin. I was able to attend aValues Vision Action Workshopthat was done by CACL. The

Letting Go

information I gained during theworkshop and from otherparents at the workshop enabledme to deal more successfullywith Social Services and Robinwas able to move out of thefamily home in 2012. She nowlives with two other ladies in atown house on a quiet street inthe city.

In the past year Robin has grownso very much as an individual.The change for us is wonderfulto see. She is involved in hercommunity and enjoys life.Through Special Olympics hasdiscovered golf which she verymuch enjoys.

Charlotte and I can now resteasier knowing that Robin willhave a happy life whateverhappens now. She has thesupport she needs plus thesupport of her sister Vanessaand Charlotte and I.

Roger lives in a small villagealong the coast of Nova Scotia.He was a member of theCanadian Air Force for thirty-twoyears. He first joined the ACLmovement in 1992 as a volunteerwith the local branch and hasbeen involved ever since indifferent roles at the local,provincial and national levels.

The Isnors – Vanessa, Charlotte, Roger and Robin

By Roger IsnorNova Scotia


The Power of NetworkingBy Jo-Ann and Evan SpellmanBritish Columbia

Evan and I are the parents ofJoseph.

Joseph is 28 years old and hasDiGeorge Syndrome, which is agenetic disorder. The DiGeorgesyndrome caused Joseph to beborn with a heart defect. Themedical professionalsdetermined that Joseph's heartdefect was a severe case andJoseph was not expected to livefor more than 5-6 yrs. At thetime the doctor's informed usthat it was not possible toperform corrective surgery.

As a family our entire focusrevolved around Joseph'sphysical needs and we weredetermined that he wouldsurvive. When Joseph reachedthe age of 6 years, the doctorswere able to do corrective heartsurgery. Joseph had subsequentheart surgeries at age 16 andagain at age 27.

We always suspected thatJoseph had a mental/cognitivedisability but did not knowwhat. When Joseph had hissecond heart surgery at age 16,Children's hospital conductedgenetic testing and found thatJoseph had a disorder calledDiGeorge syndrome.

From birth to age 19 we as afamily were Joseph's solesupports. We were neverinformed that support wasavailable. We struggledfinancially/emotionally andphysically in our commitment tomaintaining Joseph's well-being.

Fast forward to September2012; Joseph attended St.Paul’s Hospital for his 3rd heartsurgery for valve replacement.Joseph had been receiving verylimited support fromCommunity Living BC since age21, without much success.Joseph's life had been on adownward spiral for close to 6months, mainly due toinadequate support from CLBC. Frustrated and uncertain ofwhat to do, Evan found byaccident the website for BCACL,now known as Inclusion BC.Evan contacted Inclusion BCand discussed our son'spredicament. Inclusion BCsuccessfully negotiated muchneeded supports for Joseph andcontinues to do so.

We developed a good workingrelationship with Inclusion BCin the lower mainland. As aresult we attended a ValuesVision Action workshop inMaple Ridge last year. At theworkshop we listened to storiesof people who overcame theobstacles of care related to

children with special needs. Theworkshop allowed us theopportunity to engage withpeople from across Canada. Wegained incredible insight intothe power of networking andthat there truly is strength innumbers when supporting ourchildren. We came away fromthe workshop inspired and witha renewed sense ofdetermination.

Currently we are workingtowards Joseph beingsupported by the HOMESsociety in Abbotsford BC.Inclusion BC has been integralto the process of securingJoseph's future and ensuringthat he has a good quality oflife.

Jo-Ann and her husband havetwo children, Joseph andJordanna; and have lived inPrince Rupert for the past 25years. An outdoor orientedfamily, they enjoy hiking to theircabin in the mountains. Much oftheir time is devoted to theirson's needs and well-being.

Jo-Ann and Joseph Spellman


There is no question in theminds of a parent that theirchild has something to

offer this world. We see it inthe twinkle of our kid’s eyeseveryday. In fact, parents of achild with an exceptionality maysee it clearer than the nextparent as it is brought to ourattention multiple times daily. Iam no different. The potentialthat I see in my children givesme the chills sometimes. It’sexciting and hopeful. So why isit that not all people have theability to see that value? It is soapparent, is it not? Evidentlynot to everyone. Most don’thave the constant reminder somany times a day. That’s why Ibelieve our children have theability to share their value,teach humanity and guide usthrough compassion if we onlyallow them to. It is throughtheir mere existence, thatlearning opportunities for therest of us are so abundant. Weonly need open our eyes andour hearts.

I have redefined what inclusionmeans to me. I used to beunder the impression that itmeant the number of hours myson, Andrew, sat in theclassroom in the presence of hispeers. Now, it is the time thatwe (my husband, my youngestson and I plus all the otherswatching over him), allow himto share his values with others,teach humanity through hisactions and guide us all throughthe emotion of compassion. Hewouldn’t do any of that withoutbeing fully involved in the life of

an 11 year-old. Myjob is to find theenergy and creativityto participate in theactivities where hecan do that.

Living in ruralSaskatchewan hasits challenges whenlooking for social opportunities.We’ve managed quite well inthe past, however, and arecurrently creating a communitypeer mentor group for childrenin our community to increasethese learning opportunities.Children will be paired together.Who is the mentor, you ask? Ichallenge. The street goes bothways.

It is a difficult feat, raising achild with special needs in anordinary world, none of which ispossible without thefoundational support of otherswho already see the value inevery individual. It’s thissupport that keeps us going asparents, helps us reach out andrelate to one another andlaugh/cry about our commonexperiences. My provincial ACLhas connected me to a web ofmothers on a similar journeyand provided me with thestrength and courage to relaythat same kind of support in mylocal community. I not onlyenjoy the camaraderie but alsohave come to depend on thecollective wisdom.

The national ACL has alsoplayed a role in raising myexceptional child and in turn,

increasing the quality of life forthe entire family. I attended aValues, Vision and Actionworkshop that introduced theidea of a Microboard to me. Iwas overwhelmed whilethinking of our wills and thefuture of our son after we are nolonger capable of supportinghim. Now I have a much clearervision of creating a circle ofsupport should he be leftwithout us. His future can becarved by that same collectivewisdom and he could even bethe chairperson should hechoose. Knowing that gives mesuch peace.

So as we venture forth, paving away as smoothly as possible forour sons, we try to liveinclusion, not just talk about itand hopefully help nurture acommunity that will look for thevalue in everyone and find it!

Bluesette and her husbandMark live in Meadow Lake, SKon a ranch with their two boys,Andrew(11) and Birch(8).Bluesette is currently thePresident of PACE (PeopleAdvocating for Children withExceptionalities) that supportsfamilies raising children withspecial needs.

To Inclusion and BeyondBy Bluesette Campbell Saskatchewan

The Campbell's – Mark, Bluesette, Andrew, and Birch


Are They Magnets?By Frances PetrowskiManitoba

Gina Petrowski was born inGimli, MB on August 30,1990. She has two older

brothers, Wes and Jake. Wefound out at a week old that shehad Down syndrome.Immediately I wanted to gatherinformation on Down syndromeso I joined the Manitoba DownSyndrome Society. It was thebest board I have ever been on.I had so much fun AND weaccomplished so much! It wasand still is important for me toconnect with other parents togain support and updatedinformation (especially asrelated to inclusion).

I had a home daycare whileGina was growing up so thatenabled me to be at home withher but she still hadsocialization with other kids.I did put her into daycare twoafternoons a week the yearbefore she started school sothat she would know some ofthe kids she would be going toschool with. The daycare wasawesome in the way ofinclusion and support.

Gina attended the same schoolas her siblings. The mostnegative experience was whenGina was to start school and acomment filtered back to methat a mom didn’t want herdaughter in the same class asGina. The schools were alwayssupportive with a few teachersexceptional in ensuringinclusion occurred for her. Theydid this by having highexpectations, assisting inhelping Gina engage in extra

clubs and programsin the school . Ginagraduated with herpeers but stayed inschool for a coupleof years to do somework experience at fourdifferent locations in town.

I joined the Parent AdvisoryCouncils to advocate whenneeded and to make sure therewere no budget cuts to specialneeds funding. I attendedmany meetings over the yearsto advocate for inclusion andadequate funding.

Community inclusionexperiences were positive. Ginawas a 4H member for manyyears. It was a great smallgroup and Gina completednumerous projects. Gina is analtar server at our church andhas been since she was veryyoung. She is very seriousabout this job and her churchcommunity loves her.

Gina is now in a workshopfacility that does recycling andshe also helps out at a localgrocery store and at a secondhand store once a week.

Our huge challenge now iswhere Gina will live inclusively.Our small community is greatbut not everyone understandsinclusion and still seessegregation as an acceptablepractice. Our idea is quite

different. Our values werereinforced and expanded whileattending our first Values, VisionAction Conference put on twoyears ago in Winnipeg by theCanadian Association forCommunity Living (CACL). Therewere a few “AHA” moments.

One phrase that stands out forme and I use repeatedly toeducate others is “Are theymagnets? Do they all have towork together and livetogether?” WOW!!! This catchphrase helps me to keep focusedwhile I am searching andstruggling to make her futuremore inclusive. I enjoyedconnecting with other parentsand seeing how they are helpingtheir kids live more inclusivelives. We enjoyed the conferenceso much we attended again thisyear. We all need another “shotin the arm” to keep us going andconnected!

Frances and Joe Petrowski live inGimli, MB and have threewonderful children. When notworking as an administrativeassistant at the Gimli HighSchool, Frances ‘lives’ togarden, enjoys taking picturesand loves playing with her newgrandson!

The Petrowskis – Jake and Les, Frances, Gina and Joe

This project is funded in part by theGovernment of Canada's Social DevelopmentPartnerships Program – Disability component.The opinions and interpretations in thispublication are those of the author and do notnecessarily reflect those of the Government ofCanada.

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Ten Objectives Forthe Next Ten Years

• Achieve equality rights andrecognition.

• Close institutions and assure ahome in the community.

• Secure child rights and neededsupports.

• Ensure families have neededsupports.

• Achieve inclusive education.

• Secure the right and access todisability supports.

• Establish safe and inclusivecommunities.

• Eradicate poverty for people withintellectual disabilities and theirfamilies.

• Achieve employment equality.

• Make a global impact oninclusion.

Our 2020 Agenda has ten objectivesto guide how we’ll realize our vision:communities, a country, and a worldwhere diversity includes.

Join us in making this dream becometrue. Visit www.cacl.ca

CACL Family Leadership & VolunteerEngagement Advisory CommitteeA mandate to:

• Promote and help facilitate delivery of the Values, Vision and ActionFamily Leadership Workshop

• Create content and coordinate production of Coming Togethernewsletter

• Identify opportunities for volunteer contribution to CACL programsand online presence, and ways to support volunteer engagement.

Volunteers are a critical part of the community living movement and ofour CACL federation in particular. The involvement of volunteers helpsus build fully inclusive communities and advocate for human rights forpeople with intellectual disabilities and their families.

We draw our strength from our volunteers; volunteers whose passion,action and impact have sustained and defined our movement for morethan 50 years, and more importantly have contributed in so manyprofound ways to making this country more inclusive of people withintellectual disabilities.

As a way of acknowledging our volunteers – family members, self-advocates, friends, and professional colleagues – we are posting profilesof some of these thousands of volunteers from across the country.Profiles can be viewed at: http://www.cacl.ca/about-us/community-volunteers

As part of the Canadian Association for Community Living’s ComingTogether... to Create Change: National Family Leadership Series,CACL, in collaboration with participating Provincial / TerritorialAssociations for Community Living, is offering its Values, Vision andAction Workshop.

Participants will gain a deeper understanding of the history, valuesand vision of the community living movement, the changingperspectives on disability within our society and the role familiesplay in translating this vision into a ‘good life’ for family members.

If you have a group of families and are interested in finding outabout having a workshop organized in your community pleasecontact CACL, [email protected] or 416-661-9611, or your Provincial /Territorial Association.

What is your story?If you would like to contribute a story for a future edition of thisnewsletter, or know of a family that is creating change and whosestory should be told, contact:Mary Whitehead at: [email protected] or Don Gallant at: [email protected]

coming together - fall 2013

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