Thomas L. Layton, Ph.D.

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Down syndrome Education and Communication

• Thomas L. Layton, Ph.D.
• Talk and Total Communication Services

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What we know about DS

• 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

• 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
  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 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
• 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 Disorderin 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 lt3 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,
  feeding-swallowing 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 Isnt

• 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 others 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
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Addressing Challenging Behaviors in Children
with Down syndrome
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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
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Early Language Development

• Early intervention is key for children with DS
• Parental education
• Input should match childs 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- childs 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 childs 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 childs 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
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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
• 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 childs
  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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Bobbys data

• Oral training first two stages
• Sign training stages 3 through 6
• Follow-up one year later

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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 preschool and early elementary
children
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Speech Intelligibility Techniques
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Development of Speech

• Vowels, semivowels, nasals, stops acquired first
• Fricatives, affricates, and liquids are a problem
  even into adulthood.

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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

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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
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Types of errors substitutions, distortions,
omissions

• DS w/ OM more omissions
• DS w/out and TD Artic produced similar errors
  (substitutions distortions)

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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

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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

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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, Ill 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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• ELF
• Reading in Children 3 - 5 years

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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 70s early intervention
• Mid 80s reading in young children
• Mid 90s 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).

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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.

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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

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SHARED STORYBOOK READINGCREATE - READ

• Child chooses the book
• Remember to follow the childs lead
• Expand childs 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 Children

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• Read for comprehension...answer questions
• discuss reading material
• Record dialogues
• Answering questions
• Writing sentences, simple paragraphs

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• 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.
• .

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• 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
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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!

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iPad apps

• Demonstration
• (Handout)

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China
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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
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Beijing NC
Population 17,550K 9,491K
SLPs 100 4,150
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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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• 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!

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• What lies behind us and what lies before us are
  tiny matters compared to what lies within us.
• Oliver Wendell Holmes

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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/