Down syndrome:
Education and
Communication
Thomas L. Layton, Ph.D.
Talk and Total Communication Services
What we know about DS
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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
Development
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Spoken language delayed for most children with
DS – first words 24-48 months
Communication skills are poor
Vocabulary is delayed
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Grammar
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Understanding ahead of expression
Typically use only key words
Speech
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Poor intelligibility, means difficult to understand
If child can not be understood, reluctant to speak
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Growth Problems
 Separate
Growth Chart
 Early
growth delays
 Eventual Increase in
Weight for Height
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Musculoskeletal
Atlantoaxial
and Motor Disabilities
instability (15%)
Increased mobility of the cervical spine at the
level of the first and second vertebrae
Approximately
10% w/ AAI may have
Neck
pain
Unusual posturing of the head and neck
Change in gait
Loss of upper body strength
Abnormal neurological reflexes
Change in bowel/bladder function
Hypotonicity (arms, legs, face, oral
motor)
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Vision Problems
 “Lazy
Eye” (strabismus)
 Cataracts
 Spotted Iris
 Nystagmus
 Myopia (Near Sightedness)
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Hearing Problems
 60
– 75% experience some hearing loss
 Chronic Otitis Media
 Anatomy of skull, foreface, ear canals,
and Eustachian tube dysfunction
 Higher incidence of Sensory-Neural loss
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Oral-Motor
30-40% demonstrate moderate-to-severe
oral motor problems
 Poor
swallowing, poor tongue control,
positioning, poor lip control.
 Affects tongue-tip sounds...phonological
process are atypical...front consonants are
produced posterior.
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Life 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
advances in surgery.
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Life Expectancies
 Alzheimer
disease: A problem after age
20 years
 Occurrence
of senile plaques and
neurofibrillary tangles in DS match brain
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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Autistic Spectrum Disorder
in Down Syndrome
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 criteria
Autistic Disorder (onset <3 yr.)
Pervasive Developmental Disorder-NOS
Childhood Disintegrative Disorder (late-onset)
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Autistic Spectrum Disorder in
Down syndrome
 Meeting
DSM-IV criteria exhibit a
spectrum of social-skill impairments
 Concordant with low cognitive level
social delay & adaptive impairment
 Discordant with cognitive level
social withdrawal – apathy
social indifference – aloofness
social avoidance - anxiety
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DS-ASD
Early Onset
Poor development, gradual onset of atypical
behaviors (gaze, stereotypy)
**Infantile spasms more frequent in this group
Characteristic EEG pattern
Severe neuro-motor impairments, feedingswallowing problems
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DS-ASD
Late Onset
Typical 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 inattention
Obsessive 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
Verbal or non-verbal
No
Yes
Yes
Eye contact
No
Some
Yes
Imagination
No
No
Some
Echolalia
NA
Yes
No
Communication
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.
Talk and Total Communication
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
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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
Talk and Total Communication
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.
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 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
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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
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iPad story starter aps
Cloze procedure/choices
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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 Picture
Iconic
Shapes are visually
like the concept
 car
 eat
 ball
 cat
 on
 girl
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 syndrome
 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: Comprehension
 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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Hypotonia
 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 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:
 At
the same time we introduce words usually around 6 - 8 months
 Use of signs comes before speech
production
 Sign while communicating to child
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e.g. “Dog - dog” I see dog” “See dog!”
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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 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 data
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Oral training
first two stages
Sign training
stages 3
through 6
Follow-up one
year later
700
600
500
400
Sign
Oral
300
200
100
0
1st
3rd
5th
Post
Talk and Total Communication
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
Talk and Total Communication
Communication in
preschool and early
elementary children
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
I
5.64
3.75
2.60
M
5.46
4.00
3.10
F
5.55
3.17
2.30
I
0.64
0.17
0.00
M
1.09
0.17
0.00
F
1.55
0.17
0.00
I
1.00
0.17
0.20
M
1.00
0.00
0.00
F
1.09
0.08
0.00
Fricatives
Nasals
Glides
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 Language
 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
Talk and Total Communication
Suggestions for Stimulating Language
 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 meaningful
way
Talk and Total Communication
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
Talk and Total Communication
 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
Talk and Total Communication
 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.
Talk and Total Communication
 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
Talk and Total Communication
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
Talk and Total Communication
ELF
Reading in Children 3 - 5 years
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 children
 Buckley
(1985) reported on Sarah who read at age
3 years.
 Buckley (1995) reports on Digby who read at 25
months of age, long before he spoke his first
word. Emma and Daniel read at 28 months, Zoe
at 3 years 5 months, and Jamie at 3 years.
 Buckley also reported that Daniel used his
reading to improve his expressive 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/ DS learn
concepts that improve oral and written
language (Buckley, 1995; Layton, 2000).
 Children w/ DS can learn to read early
(Buckley, 1995; Layton, 2000; Lorenz et
al., 1985).
Talk and Total Communication
Introduce reading...whole word approach
initially
 Read
a familiar story several times.
 Pictures with accompanying words.
 Words without pictures...functional
words.
 Simple stories with themes.
Talk and Total Communication
Introduce 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
Talk and Total Communication
SHARED STORYBOOK READING
CREATE - READ
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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
Talk and Total Communication
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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
Talk and Total Communication
Reading in Older Children
 Read
for comprehension...answer questions
 discuss reading material
 Record dialogues
 Answering questions
 Writing sentences, simple paragraphs
Talk and Total Communication
 Words
to popular music for teaching
reading and comprehension.
 Subscribe to age appropriate magazines.
 Obtain library card, let child select reading
material
 Read from daily newspaper, such as sports
page, teen section, movies section
 Introduce writing with reading.
 Do not let motor difficulty impair writing,
select alternative devices.
.
Talk and Total Communication
 Use
holiday themes to compile lists, write
letters, etc. Use pictures along with words.
 Use e-mail on computer to write to friend,
relative, teacher.
 Compile a list of items wanted from grocery
store. Let child select the items from list.
 Write in a personal diary. Child can write
anything or draw. Make this a short (10 minute)
daily activity. Diaries are confidential.
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iPad apps
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!
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Talk and Total Communication
iPad apps
Demonstration
(Handout)
China
China
USA
Population
1,336,970 K
309,075 K
SLPs
1K
140K
Programs
3 postgraduate
programs
1 undergraduate
program
232 postgraduate
programs
310 undergraduate
programs
Talk and Total Communication
Beijing
NC
Population
17,550K
9,491K
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 Down
Syndrome is 1,623,559
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Talk and Total Communication
Talk and Total Communication

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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Thanks
for
Listening!
What lies behind us and what
lies before us are tiny matters
compared to what lies within
us.
Oliver 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/