1. Thomas L. Layton, Ph.D. Talk and Total Communication Services
Down syndrome: Education and Communication
Thomas L. Layton, Ph.D.
Talk and Total Communication Services

2. Talk and Total Communication
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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4. Speech and Language Development
Spoken language delayed for most children with DS – first words 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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5. Talk and Total Communication
Growth Problems
Separate Growth Chart
Early growth delays
Eventual Increase in Weight for Height
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8. Talk and Total Communication
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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9. Talk and Total Communication
Vision Problems
“Lazy Eye” (strabismus)
Cataracts
Spotted Iris
Nystagmus
Myopia (Near Sightedness)
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10. Talk and Total Communication
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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11. Talk and Total Communication
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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13. In 1929 life expectancy was 9 years
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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15. Talk and Total Communication
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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16. Talk and Total Communication
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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17. Down syndrome Perspective on Dual Diagnosis
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18. 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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19. 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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20. Talk and Total Communication
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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21. Talk and Total Communication
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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22. 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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23. 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
Imitates
Social Play
Some Yes
Peer friendships
No Some
Communication
Verbal or non-verbal
Yes Yes
Eye contact
Imagination
Echolalia NA
Yes No
Motor stereotyped
Hand stereotyped
Yes
Yes No
Preoccupation with objects
Insistence on routines
Yes Some

24. Addressing Challenging Behaviors in Children with Down syndrome

25. Intervention Strategies
Setting events
Replacement skills
Consequence strategies
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26. Talk and Total Communication
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

27. Communication in Infants and Toddlers

28. 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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29. 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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30. 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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31. Talk and Total Communication
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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32. 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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33. Recasting speech and language
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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34. Talk and Total Communication
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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35. 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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36. The Role of Signing in Early Communication

37. 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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38. Talk and Total Communication
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
Talk and Total Communication

39. 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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40. 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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41. Talk and Total Communication
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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42. Talk and Total Communication
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
Talk and Total Communication

43. Talk and Total Communication
We introduce signs:
At the same time we introduce words -usually around months
Use of signs comes before speech production
Sign while communicating to child
e.g. “Dog - dog” I see dog” “See dog!”
Talk and Total Communication

44. Talk and Total Communication
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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45. 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
Talk and Total Communication

46. Talk and Total Communication
Bobby’s data
Oral training first two stages
Sign training stages 3 through 6
Follow-up one year later
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47. 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

48. Communication in
preschool and early elementary children

49. Speech Intelligibility Techniques

50. Development of Speech Vowels, semivowels, nasals, stops acquired first
Fricatives, affricates, and liquids are a problem even into adulthood.

51. 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

52. 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
5.64
3.75
2.60
5.46
4.00
3.10
5.55
3.17
2.30
Nasals
0.64
0.17
0.00
1.09
1.55
Glides
1.00
0.08

53. Types of errors: substitutions, distortions, omissions
DS w/ OM – more omissions
DS w/out and TD Artic produced similar errors (substitutions & distortions)

54. 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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55. 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

56. 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

57. 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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58. Talk and Total Communication
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

59. 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
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60. 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

61. 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
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62. 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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63. Reading in Children 3 - 5 years
ELF
Reading in Children years

64. History of working with children with Down syndrome
Self contained programs
Expectations - sheltered workshops
Little expectations of reading, calculations
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65. Talk and Total Communication
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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66. 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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67. Talk and Total Communication
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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68. 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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69. 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
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70. SHARED STORYBOOK READING CREATE - 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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71. Talk and Total Communication
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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72. Reading in Older Children

73. Talk and Total Communication
Read for comprehension...answer questions
discuss reading material
Record dialogues
Answering questions
Writing sentences, simple paragraphs
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74. 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. .
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75. Talk and Total Communication
Use holiday themes to compile lists, write letters, etc. Use pictures along with words.
Use 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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78. iPad apps

79. Talk and Total Communication
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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80. iPad apps
Demonstration
(Handout)

81. China

82. Talk and Total Communication
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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83. Beijing NC
Population
17,550K
9,491K
SLPs
100
4,150

84. *Estimated number of individuals with Down
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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85. Talk and Total Communication

86. Talk and Total Communication

87. Talk and Total Communication

88. 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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89. Thanks
for
Listening!

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

91. Web Pages www.triangledownsyndrome.org/ www.ds-health.com/ds_sites.htm