Thomas L. Layton, Ph.D.Thomas L. Layton, Ph.D.Talk and Total Communication Talk and Total Communication
ServicesServices
Down syndrome: Down syndrome: Education and Education and CommunicationCommunication
What we know about What we know about DSDS
Prevalence 1/700 live births in USA Most children have delayed
development Wide range of abilities from mild
to severe For most, level ability can not be
predicted at birth Early intervention makes a
difference
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Speech and Language Speech and Language DevelopmentDevelopment Spoken language delayed for most
children with DS – first words 24-48 months
Communication skills are poor Vocabulary is delayed
Understanding ahead of expression Grammar
Typically use only key words Speech
Poor intelligibility, means difficult to Poor intelligibility, means difficult to understandunderstand
If child can not be understood, reluctant to If child can not be understood, reluctant to speakspeak
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Growth ProblemsGrowth Problems
Separate Growth Separate Growth ChartChart Early growth delays Eventual Increase
in Weight for Height
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Musculoskeletal and Motor DisabilitiesMusculoskeletal and Motor Disabilities
Atlantoaxial instability (15%)
Increased mobility of the cervical spine at the level of the first and second vertebrae
Approximately 10% w/ AAI may have Approximately 10% w/ AAI may have Neck painNeck painUnusual posturing of the head and Unusual posturing of the head and neckneckChange in gaitChange in gaitLoss of upper body strengthLoss of upper body strengthAbnormal neurological reflexes Abnormal neurological reflexes Change in bowel/bladder functionChange in bowel/bladder function Hypotonicity (arms, legs, face, oral motor)
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Vision ProblemsVision Problems
““Lazy Eye” (strabismus) Cataracts Spotted Iris Nystagmus Myopia (Near Sightedness)Myopia (Near Sightedness)
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Hearing ProblemsHearing Problems
60 – 75% experience some hearing loss
Chronic Otitis Media Anatomy of skull, foreface, ear Anatomy of skull, foreface, ear
canals, and Eustachian tube canals, and Eustachian tube dysfunctiondysfunction
Higher incidence of Sensory-Neural Higher incidence of Sensory-Neural lossloss
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Oral-MotorOral-Motor
30-40% demonstrate moderate-to-severe oral motor problems Poor swallowing, poor tongue Poor swallowing, poor tongue
control, positioning, poor lip control, positioning, poor lip control. control.
Affects tongue-tip Affects tongue-tip sounds...phonological process are sounds...phonological process are atypical...front consonants are atypical...front consonants are produced posteriorproduced posterior.
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Life ExpectanciesLife Expectancies
In 1929 life expectancy was 9 years In 1983 life expectancy was age 25
years In 1997 life expectancy has risen to
age 49 years Current estimates indicates life
expectancy is now 55 years Due to improvements in medical care and Due to improvements in medical care and
advances in surgery.advances in surgery.
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Life ExpectanciesLife Expectancies Alzheimer disease: A problem
after age 20 years Occurrence of senile plaques and Occurrence of senile plaques and
neurofibrillary tangles in DS match neurofibrillary tangles in DS match brain lesions of Alzheimer diseasebrain lesions of Alzheimer disease
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Aging Decline in cognition No decline in language skills up to
middle age 50+ years may see decline in skills
of speech, pragmatics, and receptive vocabulary (especially for those with dementia
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Down syndrome
Perspective on Dual Diagnosis
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Prevalence of DS & ASD ~5% Impairments in: Reciprocal social and
language function. No symbolic or imitative play
Restricted interests: Repetitive or ritualistic behaviors.
DSM-IV / ICD-9 criteriaAutistic Disorder (onset <3 yr.)Pervasive Developmental Disorder-NOSChildhood Disintegrative Disorder
(late-onset)
Autistic Spectrum Disorderin Down Syndrome
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Meeting DSM-IV criteria exhibit a spectrum of social-skill impairments
Concordant with low cognitive levelsocial delay & adaptive impairment
Discordant with cognitive levelsocial withdrawal – apathy social indifference – aloofnesssocial avoidance - anxiety
Autistic Spectrum Disorder in Down syndrome
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DS-ASDEarly Onset Poor development, gradual onset of
atypical behaviors (gaze, stereotypy)**Infantile spasms more frequent in this
group
Characteristic EEG patternSevere neuro-motor impairments,
feeding-swallowing problems
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DS-ASDLate OnsetTypical early development followed by
subacute behavioral deterioration and regression (speech, cognitive, social skills)
Motor skills unchanged
Seizures or EEG abnormality not typically observed
Autoimmune? Leukemia ChemoTx ? None of the above ?
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Appears Like Autism..but Isn’t
Stereotypic movements - unusual sensory responding and inattentionObsessive compulsive disorder – perseveration & rituals
Language, Play, and Social relatedness are relatively preserved
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Case Studies (Two dual dx; One DS only)
DSM IV Child dual Child dual Child DS
Social Interaction
Awareness for other’s feelings No No Yes
Seeks comfort No No Yes
Imitates No No Yes
Social Play No Some Yes
Peer friendships No No Some
Communication
Verbal or non-verbal No Yes Yes
Eye contact No Some Yes
Imagination No No Some
Echolalia NA Yes No
Motor stereotyped
Hand stereotyped Yes Yes No
Preoccupation with objects No Yes No
Insistence on routines Yes Yes Some
Addressing Challenging Behaviors in Children with Down syndrome
Intervention Strategies
Setting events Replacement skills Consequence strategies
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Setting events Changes in events that may influence
behaviors Allergies, sleep disorder, illnesses
Intervention: record setting and behavior; e.g., notebook at home to let school know child did not have a restful sleep
Sharing with other caregivers setting event
Adjust demands on child, like at school, and increase highly preferred activities.
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Communication in Infants and Toddlers
Early Language Development Early intervention is key for children with
DS Parental education
Input should match child’s comprehension Sensory stimulation Monitor hearing Social skills development- i.e. peekaboo,
turn-taking toys Consider total communication Daily routines to teach concepts
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Useful tools/techniques Visual cues
Because of possible hearing loss, supplement verbal communication with visual cues, i.e. gestures
Pacing boards Multi-word stages – 1 dot per word Increase MLU – 1 dot per morpheme or
syntactic element Carrier phrases: to promote multi-word phrases Expansion of single word utterances to multi-
word utterances Mirrors to promote self-awareness
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Vocabulary/Semantics
Expand vocabulary Use whole language
activities – i.e. daily activities Increase length of
utterances/phrases Use play-based activities -
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Selecting First Words Functional words, child interest, child
directed Follow normal development, child skill level Items should be reinforcing
Food: cookies, juice, chips Toys: bouncing ball, action, sounds Motor: tickle, bouncing on trampoline, wiggle Sensory: music, hot/cold, down Social: bye, finished, please
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Intervention
Scaffolding and Generalization Milieu language teaching –
naturalistic Modeling Prompting Speech and Language recasts-
child’s utterance is expanded into a grammatically form
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Recasting speech and language Speech
Adult utterances that add only sound information to the child’s oral output
For example, child says, “This is a -at.” Adult says, “Yes cat.” No new grammar information is added.
Grammar Adult utterances that add grammar or
semantic information to the child’s oral output
For example, child says, “She seep.” Adult says, “Yes, she sleeps.” (adding speech and
correct verb ending. New grammar information is added
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Use of verbal routines
Verbal routines are useful when child acquires common utterance in discourse situations
For instance, child says, “I want ___,” “I see ___,” or even “No more ___,” and “Where ___?”
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Spontaneous speech activities Action pictures
Child describes actions – adult expands Frequent repeat same pictures
Thematic activities Literacy kits
Rehearsal and modeling Play situation to teach social interaction –
little people Pretend going to park to play on swings
Story starters iPad story starter aps
Cloze procedure/choices Model choice during requesting – child makes choice
between two toys, food, pictures
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The Role of Signing in Early Communication
Signing is Like a PictureSigning is Like a Picture
Iconic
Shapes are visually like the conceptcareatballcatongirl
Abstract or less of a relationship play more please no, yes
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Intervention AAC sign language
Some children do not acquire first word until 6 years old
Sign can be used as supplement, as verbal communication skills are still minimal
a Sign can be a primary means of communication when necessary
Sign can be an additional support to decrease frustration because receptive skills better than expressive
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Children with Down Children with Down syndromesyndrome
Overall slower developing motor areas
Typically hypotonia, flaccid motor skills
Data suggest myelination along motor strip is delayed in development
This could account for the delays in expressive words.
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Children w/ DS: Children w/ DS: ComprehensionComprehension
Comprehension in auditory cortex develops earlier than production in motor cortex
Comprehension may occur in both left and right hemispheres
Child has early understanding of language, similar to typical child
Child may have a need to communicate, similar to typical child, but no means
Signing is a means for early communication
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HypotoniaHypotonia
Complicates expressive language, nearly all children with Down syndrome have hypotonia
Demonstrated in poor strengthening of large and fine motor skills
Walking, writing, drawing are affected Tongue, lip, jaw movements also
affected Speech is subsequently impaired
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Oral Motor ProblemsOral Motor Problems
40% or more of children with Down syndrome have moderate-to-severe oral motor problems
Oral motor problems impede speech production and speech intelligibility
Sign can be used to augment poor speech intelligibility during social communication exchanges
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We introduce signs:We introduce signs:
At the same time we introduce words -usually around 6 - 8 months
Use of signs comes before speech production
Sign while communicating to child e.g. “Dog - dog” I see dog” “See dog!”
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We introduce signs:We introduce signs:
Introduce Iconic signs first Stimulation (comprehension) first Later on, we shape the sign by
taking child’s hand while stimulating
Remember to use SPEECH Stimulate, shape hands, wait for
child to produce it Reinforce all attempts
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Does signs prevent talking Does signs prevent talking later on?later on? All data show sign does not delay speech Our own empirical data show signs drop
off when a child is ready to talk. Wisconsin research suggests children
who are early signers have better speech and language skills later on.
Even if child has severe oral motor problems, signing can help in speech intelligibility
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Bobby’s dataBobby’s data
Oral training first two stages
Sign training stages 3 through 6
Follow-up one year later
0
100
200
300
400
500
600
700
1st 3rd 5th Post
Sign
Oral
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Signing: Summary
A means for the child to communicate early
A teaching tool for learning language skills and concepts
An imaginative, interesting, and fun experience
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Communication in Communication in preschool and preschool and early elementary early elementary childrenchildren
Speech Intelligibility Techniques
Development of Speech
Vowels, semivowels, nasals, stops acquired first
Fricatives, affricates, and liquids are a problem even into adulthood.
Study with oral-motor problems
Three groups matched by age and gender DS w/oral-motor problems DS w/out oral-motor problems Typically developing group with
developmental articulation errors
Manner Position
DS w/ OM DS w/out TD Artic
Stops I 1.82 0.25 0.20
M 3.00 0.67 0.50
F 3.55 0.42 0.60
Fricatives I 5.64 3.75 2.60
M 5.46 4.00 3.10
F 5.55 3.17 2.30
Nasals I 0.64 0.17 0.00
M 1.09 0.17 0.00
F 1.55 0.17 0.00
Glides I 1.00 0.17 0.20
M 1.00 0.00 0.00
F 1.09 0.08 0.00
Types of errors: substitutions, distortions, omissions
DS w/ OM – more omissions DS w/out and TD Artic produced
similar errors (substitutions & distortions)
Improving Intelligibility Keep in mind: pitch, rate, oral-motor
abilities, working memory Apraxia Articulation test to obtain profile of
errors Use of “typical” intervention Focus on syllable structure Phonological Awareness: books
Phonological Processes
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Suggestions for Stimulating Suggestions for Stimulating LanguageLanguage
Follow the child’ lead. Talk about what s/he is doing using single words or short phrases.
Speak slightly slower and a little louder Sit face-to-face while playing and talking Hold objects and toys near your mouth Talk about what you are doing while doing it Think out-loud. Let child hear your thoughts Be aware of “over talking.” Leave some
silence Look for opportunities to emphasize new
vocabulary and stimulate language throughout the day
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Suggestions for Stimulating Suggestions for Stimulating LanguageLanguage
Use open-ended questions (e.g., “what do you want to play?”) or choice questions (e.g., “Do you want blocks or cars?).
Have fun with language! Introduce new words, short poems,
finger play, and songs Make book reading and stories a daily
routine Respond to vocalizations in a
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Treatment Strategies: Frequency:
Intensive direct therapy Daily activities in the clinic and at home Shorter, more frequent is better
Goals: Divide long term goals into shorter
steps Make goals concrete Child needs to see progress
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Positive Image
Help child develop positive image as a communicator
Work on activities to increase intelligibility Augmentative Communication
Sign language Communication boards
Pacing Use a pacing board Teach slower and more rhythmic rate
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Sound selection Teach early developing and frequently
occurring consonants first Teach oral-motor awareness Associate tactile and visual symbols with sounds
Use a set of phoneme-grapheme associated pictures
Use tactile stimulation to teach continuant, syllables, plosives
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Selecting key words Practice sounds in frequently occurring
words Select relevant vocabulary Progress from individual consonants (“p”) to
nonsense syllables (“po”) to mono-syllabic words (“pop”).
Multisyllabic words Teach separately, using pacing and tactile
cues Difficulty is co-articulation and rapid
movements.
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Picture Communication Systems (PECS) Make picture boards of objects in the home Locate throughout the home Place visually enticing toys in clear containers Do the same with videos, foods
Request approximations to desired object Book Reading
Read books with animal sounds Read books that produce different voices, “Goldilocks” Let child finish sentence, “I’ll blow your house…”
Use Social Routines: Encourage phrases, “I want…” Incorporate sound production into activity
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Activities for auditory memory skills Use picture snapshots from story
to aid in retelling Sound to letter identification
Learning letter sounds Literacy, reading, spelling Decoding ‘sounding out’
Matching pictures to pictures – words to pictures
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ELFELF
Reading in Children 3 - 5 Reading in Children 3 - 5 yearsyears
History of working with children with Down syndrome
Self contained programs Expectations - sheltered workshops Little expectations of reading,
calculations
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History continued
Mid 70’s early intervention Mid 80’s reading in young
children Mid 90’s realized value of early
intervention with infants Current: need for phonics and
literacy
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Reading in preschool Reading in preschool childrenchildren
Buckley (1985) reported on Sarah who Buckley (1985) reported on Sarah who read at age 3 years.read at age 3 years.
Buckley (1995) reports on Digby who Buckley (1995) reports on Digby who read at 25 months of age, long before read at 25 months of age, long before he spoke his first word. Emma and he spoke his first word. Emma and Daniel read at 28 months, Zoe at 3 Daniel read at 28 months, Zoe at 3 years 5 months, and Jamie at 3 years.years 5 months, and Jamie at 3 years.
Buckley also reported that Daniel used Buckley also reported that Daniel used his reading to improve his expressive his reading to improve his expressive language skills.language skills.
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What is Known Home environment has a
dramatic influence on literacy. Expectations by parents is
important et al., 1991). Through reading, children w/ Through reading, children w/
DS learn concepts that improve DS learn concepts that improve oral and written language oral and written language (Buckley, 1995; Layton, 2000).(Buckley, 1995; Layton, 2000).
Children w/ DS can learn to Children w/ DS can learn to read early read early (Buckley, 1995; (Buckley, 1995; Layton, 2000; Lorenz et al., 1985).Layton, 2000; Lorenz et al., 1985).
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Introduce reading...whole word Introduce reading...whole word approach initiallyapproach initially
Read a familiar story several times.
Pictures with accompanying words.
Words without pictures...functional words.
Simple stories with themes.Simple stories with themes.
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Introduce PhonicsIntroduce Phonics Phonics assists in reading unfamiliar words Begin Phonics when child has
understanding of words Phonics and speech intelligibility
pronouncing words with missing sounds pacing
Phonics and writing Begin by writing and sounding out letters Combine letters and sounds
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SHARED STORYBOOK READINGCREATE - READ
Child chooses the book Remember to follow the child’s
lead Expand child’s utterances Ask open ended questions or
make inferences Talk about the print Encourage word identification
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Read and re-read the same book
Expand on new words and concepts
Always pause and let the child talk
Do have fun
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Reading in Older ChildrenReading in Older Children
Read for comprehension...answer Read for comprehension...answer questionsquestions discuss reading materialdiscuss reading material
Record dialoguesRecord dialogues Answering questionsAnswering questions Writing sentences, simple Writing sentences, simple
paragraphsparagraphs
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Words to popular music for Words to popular music for teachingteaching reading and reading and comprehension.comprehension.
Subscribe to age appropriate Subscribe to age appropriate magazines.magazines.
Obtain library card, let child select Obtain library card, let child select reading materialreading material
Read from daily newspaper, such as Read from daily newspaper, such as sports page, teen section, movies sports page, teen section, movies sectionsection
Introduce writing with reading. Introduce writing with reading. Do not let motor difficulty impair Do not let motor difficulty impair
writing, select alternative devices.writing, select alternative devices...
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Use holiday themes to compile lists, Use holiday themes to compile lists, write letters, etc. Use pictures along write letters, etc. Use pictures along with words.with words.
Use e-mail on computer to write to Use e-mail on computer to write to friend, relative, teacher.friend, relative, teacher.
Compile a list of items wanted from Compile a list of items wanted from grocery store. Let child select the grocery store. Let child select the items from list.items from list.
Write in a personal diary. Child can Write in a personal diary. Child can write anything or draw. Make this a write anything or draw. Make this a short (10 minute) daily activity. short (10 minute) daily activity. Diaries are confidential.Diaries are confidential.
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iPad apps
iPad applications are starting a revolution in the field of speech and language therapy!
Portable and easily accessible. Immediate access to internet. Used for inpatient or rehab clients. Motivating for children Used for AAC, assess skills, keep data,
or as therapy tools, incentives, games and MORE!
iPad apps
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iPad apps
Demonstration(Handout)
China
ChinaChina USA
Population
1,336,970 K 309,075 K309,075 K
SLPs 1K 140K140K
Programs 3 postgraduate 3 postgraduate programsprograms
1 undergraduate 1 undergraduate programprogram
232 postgraduate programs310 undergraduate programs
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BeijingBeijing NC
Population
17,550K17,550K 9,491K9,491K
SLPs 100 4,150
In China, because of the one child per family
policy, women usually choose to have their
child between 25 and 27 years of age.
Pregnant women of advanced
maternal age are rare.
Therefore, the birth prevalence of Down
syndrome in China is very low, less than
1/1000 live births.
*Estimated number of individuals with DownSyndrome is 1,623,559
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Meetings with other families at a special school had been arranged two days of our trip. When I informed them that I had a prenatal diagnoses of DS and a heart defect with Caroline, you could see the shock on everyone of their faces. China does not offer anything as far as services, public school, etc. like we experience here. They do not take their kids out in public. Only one of the families that we talked to actually had a diagnosis at birth, the rest found out months and up to 2 years later, after realizing themselves there were developmental delays. Once diagnosed, most did not tell their extended family that they had a child with DS. Unfortunately, the evolution of China is decades behind our way of thinking that every child deserves every opportunity.
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ThanksThanks
forfor
Listening!Listening!
What lies behind us and What lies behind us and what lies before us are what lies before us are tiny matters compared to tiny matters compared to what lies within us.what lies within us.
Oliver Wendell HolmesOliver Wendell Holmes
Web Pages www.triangledownsyndrome.org/ www.ds-health.com/ds_sites.htm www.loveandlearning.com/ www.ndsccenter.org/old/ www.nas.com/downsy/ www.downsed.org/ www.ndss.org/main.html www.nads.org/ www.mosaicdownsyndrome.com/