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

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

Talk and Total Communication

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


Growth ProblemsGrowth Problems

Separate Growth Separate Growth ChartChart Early growth delays Eventual Increase

in Weight for Height


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)


Vision ProblemsVision Problems

““Lazy Eye” (strabismus) Cataracts Spotted Iris Nystagmus Myopia (Near Sightedness)Myopia (Near Sightedness)


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


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.


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.


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


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


Down syndrome

Perspective on Dual Diagnosis


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


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


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


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 ?


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


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


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.


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


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


Vocabulary/Semantics

Expand vocabulary Use whole language

activities – i.e. daily activities Increase length of

utterances/phrases Use play-based activities -


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


Intervention

Scaffolding and Generalization Milieu language teaching –

naturalistic Modeling Prompting Speech and Language recasts-

child’s utterance is expanded into a grammatically form


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


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 ___?”


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


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


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


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.


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


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


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


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!”


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


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


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


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


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


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


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

meaningful wayTalk 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


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


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


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.


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


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


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


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


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.


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).


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.


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


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


Read and re-read the same book

Expand on new words and concepts

Always pause and let the child talk

Do have fun


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


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...


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.


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


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


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





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.


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/

http://www.triangledownsyndrome.org/

http://www.ds-health.com/ds_sites.htm

http://www.loveandlearning.com/

http://www.ndsccenter.org/old/

http://www.nas.com/downsy/

http://www.downsed.org/

http://www.ndss.org/main.html

http://www.nads.org/

http://www.mosaicdownsyndrome.com/

Documents

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