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Over the past 27 years At the Adult Down Syndrome Center Chicago (23 years) & Denver (4 years) We have seen over 6000 people with Down syndrome A one stop shop

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Page 1: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Over the past 27 years

At the Adult Down Syndrome Center

Chicago (23 years) & Denver (4 years)

We have seen over 6000 people with Down

syndrome

A one stop shop

Page 2: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

What we have learned: Behavioral Characteristics

Incredibly consistent

Strength or

Weakness

Alternative to Mental

health Labeling

Explanation:

A way to solve a

problem &, not

just a label

Page 3: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Behavioral Characteristics Key to everything: Strength or weakness

1. Expressive language

2. Self Talk

3. Social-emotional skills

4. Grooves

5. Visual Cues

• Visual memory

Page 4: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Receptive & Expressive Language

Receptive language

Seem to Take in

everything

But don’t always know

how to interpret

Weakness

Expressive language

Verbal language not a

strength

“Not good on their feet”

with spoken word

Better mediums …

Strength&

weakness

Page 5: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Lack of safety in the verbal realm: “Taking the Fifth”

When asked “How was your day”?

Or questioned about something they

did…

Many will answer “I don’t know

..or try to avoid an answer”

Just not comfortable or on an equal

footing with verbal exchanges

Page 6: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Encourage other mediums: to open their world to you (especially now)

A picture can be worth a thousand

words {especially to people with DS}

Imagine a different scene from a typical day

“Taking the Fifth” response

When asked what they did ….

They show you pictures (coupled with a few

choice words) “play”, “work”, “care” “dance”

etc

Page 7: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Encourage other mediums of expression:

Remember the written word is visual

Write in - Notes - Journals

Example: Capable Young man terrified to

talk to his mom (wrote in a journal)

Art: A phenomenal medium for people

with Down syndrome to express themselves

& spend hours after hour of quality time

They may just need crayons, colored pencils and

paper

Page 8: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives
Page 9: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives
Page 10: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives
Page 11: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives
Page 12: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Despite too expressive limitations, social receptive skills are excellent

Many people are very

perceptive

They have excellent intuition

And an uncanny sensitivity to

others (especially loved ones)

Builds good will

Page 13: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives
Page 14: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Sensitivity to others

People may be far

too sensitive to

negative emotions

Especially ANGER

Page 15: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

People are too sensitive and empathic

Often not able to block

negative feelings and

emotions encountered

Even when not directed

at them

They will take the

feelings onto

themselves

Page 16: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Self Talk

Page 17: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Despite 30 years of articles and presentations on the positive nature of Self talk

Concern and controversy persist in parents/professionals

2 major reasons

1 For teens & adults: Self talk is not acceptable in

public {Clearly not as big a concern}

2. It can also be very alarming - dramatic to family

even in a private space (one’s bedroom)

Includes fantasy play and imagined others

Page 18: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Self Talk is revered in Child Development: It gives ALL children a needed boost when learning a new task (guided action)

Research: Self talk is gradually Internalized (into

our inner speech)

By about the age of 7 in children

BUT Much later, (up to 12) in typical children with

challenges (learning problems, ADHD, Hearing or

visual.

“Because they need the boost that the SELF Talk

gives them”

Page 19: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Researchers Tell Us Self Talk CONTINUES in All of Us

Resurfaces (becomes more overt) whenever wehave a challenge for which we need a boost

For “typical adults” (you and me) it shows up as inaudible muttering (muttering that is low but still heard )

It appears then that WE ALL have Self Talk

It’s just that People with Down syndrome

May not be as sensitive or aware of the need to cover it up

Page 20: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Self talk continues In people with Down Syndrome for 3 compelling reasons

1. They need the extra boost that Self talk gives even

more than typical children who are challenged

2. BUT (unlike us) They are may not be as sensitive or

aware of the need to cover up… Families tell us this with some amazement:

- When chastised (told what to do etc)

3. {As with us}…It will resurface under times of Stress

(staying at home with family for weeks on end)

Page 21: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Self talk can be a spectacularly dramatic scene…at home {in one’s bedroom}

“May include the full range of facial

expressions, hand gestures and body

movements

Appears as if the person is on a stage

and fully enacting a scene

With at least one imaginary other

Page 22: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

These private ‘self talk sessions’:Become important personal learning labs

They bring the raw material from

their lives {incredible visual

memory}

Into their personal ‘self talk lab’

To see, process and to try to make

sense of it in the lab

Especially if they don’t understand it

Page 23: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Self talk and Imaginary friends

Offers a window on

people’s thoughts and

feelings

A way to identify a

stressor

Even when they cannot

tell you

Change in tone, more

anger or self criticism

Page 24: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

People with DS have a reputation “S”

Stubborn

“Grooves”

Set patterns and

routines

That can drive

others a little crazy

Page 25: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

There are many benefits to “grooves”

It gives

structure

and

order to

peoples

daily

lives

Page 26: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Increases independence at home and work

Once the task is

part of a daily

routine

It will be repeated

reliably

Page 27: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Grooves &Free Time Activity

A way to relax by

repeating a

favorite activity in

a quiet space

Like ‘Yoga’

Page 28: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Grooves and Stress

Under stress a ‘groove’ can

become

Less productive …

(AKA an “obsession or compulsion”)

Groove may be a conduit for stress

(Like headache, stomach issues for

others)

Page 29: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

For stuck grooves reduce any stressors:

Do not force a change

Gently establish new more productive grooves

Page 30: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

A very effective way: ‘Reset’ stuck grooves

Use of visual cues

Then help people establish a

new more positive

routine/groove

Page 31: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

For people with DS: Grooves are ‘onboard’, but visual is king

They are visual

learners

They love movies

and pictures

They remember

everything they see

Page 32: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Visual Memory “Photographic like”

Page 33: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Many people with DS have exceptional visual memories

People often remember past

people, places and events in

great detail

And in living color

Page 34: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Visual memory has a major glitch: time

People replay events as if happening

NOW ! With same feelings and emotions of

the original event

This may be good or bad depending on the memory

Page 35: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Memory: Helps to explain phobias

Page 36: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

More susceptible to Trauma

People may replay a traumatic scenes over and over

More susceptible to PTSD

Examples: ‘Parking lot’

Or McDonalds employee

Page 37: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Research Has Clearly Shown an Auditory Deficit and a Visual Asset

People are far less likely to remember

if told something

People are far far more likely to remember

if shown something

Page 38: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Use of visual cues & supports are limited only by your creativity; Preference of Son/daughter

Social skills

Naming & managing

emotions/behavior

Choice board

Schedules

Page 39: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Classic example :Visual lists can be especially helpful to encourage independence

“The list” tells ‘me’ what to do

And not mom and dad

Page 40: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Why calendars are so popular for people with Down syndrome ?

Time too abstract

5 minutes or 5 years

means

Nothing

But people easily

memorize a calendar

Allows them to See, plan

and predict

Page 41: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Visual maps take you anywhere

Page 42: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

How Do I Get My Son or Daughter To…?

Page 43: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Put Activities on a Calendar, and Go!

Page 44: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives
Page 45: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

How Do I Get My Son or Daughter To…?

Page 46: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives
Page 47: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Who needs a partner? Who needs to leave the house?…just dance

Page 48: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

How do I know something is wrong ? 3 key ways

1. If they lose interest in things they love

(eg., food, music, movies, dancing)

2. If they have more anger/ self criticism

in their self talk

3. If they have grooves that get stuck

(a key vehicle for expressing stress)

Page 49: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

3. Finally: “The Pace”

People with Down syndrome have a

reputation for having two speeds:

SLOW

and SLOWER

Page 50: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

We can learn so much from people with Down syndrome

Page 51: Over the past 27 years At the Adult Down Syndrome …...Self talk continues In people with Down Syndrome for 3 compelling reasons 1. They need the extra boost that Self talk gives

Healthy Ways of Living and Looking at Life

They have the ability to teach us

lessons

on slowing down

and experiencing the joys and

pleasures of the here and now

Martha Beck: People with DS literally

and figuratively “stop to smell the

roses”


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