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Down Syndrome 101The world is changing quickly
and so is our understanding of Down syndrome
Agenda• DS 101
– What do we want you to know?– What is Down syndrome?– Medical conditions– People First Language– Parents– Learning Profile
• Communication strategies• Classroom modifications• Behavior strategies
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Why I am here
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• Set the bar high!• Our children are more alike their
peers than different• They are all individuals• They can and will learn!• Visual, tactical, and concrete
learners!• Parents are people too.
DSACT is a resourceYOU have the power
to build bright futures!
What we want you to know
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What is Down Syndrome?
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Typical Down Syndrome
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+
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>330 genes
Three copies of the 21st Chromosome
EXCITOR
INHIBITOR
EXCITOR
INHIBITOR
http://www.dsrtf.org/page.aspx?pid=357#1
Overall medical tendencies•Heart Defects•Gastrointestinal issues•Respiratory issues
– Small sinus cavities– Prone to infections
•Thyroid dysfunction•Leukemia•Celiac disease•Precocious puberty•Atlanto-axial instability•Alzheimer's disease
Day to Day affects•Vision•Hearing loss•Muscle Hypotonia
– Motor function, speech
•High pain tolerance•Tactile sensitivity•Potty training issues•Stamina•Sleep apnea•Dual diagnosis of Autism/ADHD•Out in the open disability
Possible Medical Issues
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A child is not defined by DS
People First LanguagePutting the person before the disability…..
A child with Down syndrome NOT
a Downs child.
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The difference between the right word and the almost right word is the difference between lightening and the lightening bug.
-Mark Twain
The Parents
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Limitations…The grief cycle -survival techniques -triggers
“Until this moment, I never understood how
hard it was to lose something
you never had.”- Anonymous
“Until this moment, I never understood how
hard it was to lose something
you never had.”- Anonymous
Individual response
(based on research by Ken Moses,PhD)
Creating a NEW normal in a minefield
Strengths•Visual learners•Good Social understanding
– Use peers to model academics and behavior.
– Great at imitation•Strong readers
– Easier to remember than the spoken word
•Strong in Sign language – Reduces frustration– Provides a visual map of language.
•Good Attention in short bursts
Challenges•Visual and hearing deficits•Uneven speech and language profile
– Communications skills are good – Vocabulary is delayed– Grammar is more difficult– Clear speech is more difficult
•Short working memory– Repetition is ESSENTIAL– LONG processing time
Learning Profile
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Receptive Understanding > Expressive Understanding
VISUAL Learners!
Working Memory
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Running on Dial up in a High Speed World
Each new request starts the process over again…One thing at a time…
Good Morning Sarah…“10 seconds can save a life”
Language
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Word Understands Understandsand signs
Says word in imitation
Uses word spontaneously
Understood by unfamiliar listener
Cat 5/1/10 5/1/10 5/1/10 12/1/10 2/1/11
Dog 5/1/10 5/1/10 5/1/10 12/1/10 2/1/11
Bird 5/1/10 5/1/10 5/1/10 12/1/10
Cow 5/1/10 5/1/10 5/1/10 12/1/10 2/1/11
Monkey 5/1/10 5/1/10 5/1/10 12/1/10
pig 5/1/10 5/1/10 5/1/10 12/1/10 2/1/11
CommunicationHindering factors•Receptive language vs. Expressive language•Speech articulation•Hearing•Short term memory•Attention span•Processing time•Recalling information•Echolalia•Demands and Interruptions
– Necessary vs. unnecessary demands– Talking to fast and too much information– 10 seconds can change a life– Visual interruptions (overload)
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• Give choices– Only two that you agree with
• Do you want to do this BY YOURSELF or do you want me to help you?
– Do NOT ask a question where the answer could be NO
• Reinforce positive behavior– Keep praise appropriate Don’t overdue it.– Peer recognition system
• Reward systems are good• Keep them simple• Avoid tiered systems
Set everyone up for success
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Proactive is key
Ask parents what works well at home or in other settings
Social Stories
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• Make assignments visual– Visual prompts
• Pre-wire concepts if possible– Send high level information to parents
ahead of time.
• Teach first - don’t test first– Success breads success– Guide to right answer
• One task or concept at a time– Focus on target goal– What specifically do I need to know
that this child understands?– Remove all extra “noise”– Worksheets should only contain
“core” tasks/understanding
• Allow for process of elimination– Tinted transparency for matching
• Task start to finish (routine)– Flashcards end up in a box/tray
• How does this task align to IEP?– Align with accommodations– Align with reading/comprehension– Align with math levels
• EX: Money – representational math
Modifications
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KEY QUESTION - What is the Goal of THIS particular activity?
Learning Profile•Visual •Short working Memory•Simplified presentation•Small steps •Receptive understanding > Expressive understanding
– Ex: Money labeling (sorting)
Speech – •Unclear speech
– Multiple choice : pick one– Sort– Show me – Watch physical cues (eyes, lean)
OT•Cutting: pre-cut all but 1-2 pieces•Coloring as follow up understanding:
– Use markers– Make hashes– Bingo dotters
•Writing – Flash cards (pictures/words)
• Choose answer• Arrange images/sentences
– Trace dotted letters– Fill in one word
•Math– Math Manipulatives
• Number lines, abacus, Numicon, hundreds chart, ten frames, calculator
Remove Challenges
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Expect Good behavior •Behavior is age appropriate•Children with DS have
– Similar to behavior issues of same Mental age
– More behavioral issues than chronological peers due to cognitive and speech delays
•DS is no excuse to behave badly•Be consistent in all environments
– School, home, daycare – Home/school Log– All About Me book
Breakdowns create Behavior•Shut down (Down syndrome drop)•Uncooperative behavior
– Refuse to come to the table/walk away
– Excessive silliness– All Done!– Intentional wrong answers– Wiggling– Demanding favorite activity– Mimicking
•Aggressive behavior– Throwing– Taking things away– Hitting
Behavior Matters!
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Parents are a great resource! Stay on the same page.
Before you react, assess•Behavior is a form of communication
– Environmental /routine change – OT/PT/ST Challenge that can be
removed– Wants to be the center of attention– Resents having an adult by his side– Angry, frustrated, hurt– Form of control in a controlled
environment– Need a break
•What part did you or another person play in the behavior
Act upon the behavior•Give choices•Give the child a chance to resolve an issue before intervening•Problem solve, don’t just shut down the behavior•Give an alternate suggestion of what to do•Re-direct to a better option•When possible, allow the child to experience natural consequences•Turn Taking•Be persistent. The child will test his/her limits
When bad behaviors happen
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Avoid learning helplessness• Presume competence • Provide supports only when the student asks or need it.
Guiding thoughts…• Are you training your student to be a productive member of
society?• Are you setting the student up to fail in life by rescuing
him/her now?
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Promotes Learned Helplessness•Protecting student from taking risks•Rescuing student from anticipated outcomes•Overlooking errors•Constant prompts•Giving inflated grades•Permitted bad behavior•Making excuses•Interceding before they ask for help•Inconsistency in discipline/expectations
Promotes Independence•Setting clear limits on what is safe•Discussing issues and creating solutions•Giving clear directions/expect follow through•Student encouraged to speak for self•Teaching at a challenging level using learning strengths•Using rubric scoring honestly•Coaching student on errors•Consistency in discipline/expectations•Holding student accountable for actions•Allowing student to fail in safe environment•Teaching student to ask for help as needed
Avoid Learned Helplessness
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What does the future hold?• Post Secondary opportunities
• Real jobs for real people
• Relationships and marriage
• Actively participating in their communities
• Living independently or in semi-supported environments
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DS General Resources• National Down Syndrome Society
• National Down Syndrome Congress
• National Association for Down Syndrome
• Band of Angels
Down Syndrome Research• Down Syndrome Research Foundation
• Down Syndrome Research Stanford
• Research Down Syndrome
• Down Syndrome International
Additional DS Resources
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See the challenge and seize the opportunity
Grow and strengthen
Thank you for all that you do!
Questions and AnswersNo questions are too silly!
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3710 Cedar Street, Box 3Austin, TX 78705
Contact us for more information
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DSACTWe are a non-profit 501(c)(3) organization focused on empowering individuals with Down syndrome and their families.
Our mission is to provide education, support, and resources to individuals with Down syndrome, their families, professionals, and the community, while building public awareness and acceptance of the abilities of individuals with Down syndrome.
Our vision is a world in which all members, including those with Down syndrome, are accepted, valued for their uniqueness, respected for their abilities and contributions, and assured the opportunity and choice to create their own path to fulfillment and success.
We do this through providing information, support, educational programs, social programs, informative and training workshops, outreach programs to build awareness and support to the medical, educational and general communities, and providing a supportive community for individuals with Down syndrome and their families.
We are primarily a volunteer organization with a vested interest in achieving our mission and making our vision a reality.
Please contact us at any time for more information:
DOWN SYNDROME ASSOCIATION OF CENTRAL TEXAS3710 Cedar Street, Box 3
Austin, TX 78705512-323-0808
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Who are we?
Priority AreasProgramming and Social Events - We develop programs and social events that enrich the lives of individuals with Down
syndrome. Current free programs include: Speaker Series and Behavior Management Workshops, playgroups and social events, and recreational classes such as music therapy, dance, sign language, swim classes, martial arts, and cooking.
Education - We provide information, resources, and support to both parents and educators to ensure that individuals with Down syndrome will receive a quality education which will prepare them for further education, employment, and/or independent living. DSACT runs a Learning Program which meets monthly throughout the school year and supplies parents with lesson plans and materials that are research based and specifically designed for children with Down syndrome.
Caregiver Support - We provide social and emotional support to caregivers of individuals with Down syndrome, including support upon diagnosis and a personal renewal group for mothers, as well as ongoing emotional support workshops.
Inclusion - We promote the inclusion of individuals with Down syndrome in our schools, communities, places of worship, recreational facilities, and places of employment. In 2008, we released a joint manual with the Austin Independent School District (AISD) for educators to use in adapting the curriculum and is still in use today.
Awareness - We increase public awareness, acceptance, and understanding about the abilities of individuals with Down syndrome. In October, which is Down Syndrome Awareness Month, DSACT hosts our annual Buddy Walk which is an awareness and fundraising event to support DSACT programs. We also publish our yearly “Share the Passion” calendar which pairs individuals with Down syndrome and local celebrities. We develop presentations to community groups, students, healthcare professional and educators.
Communication - We inform members and the community of our activities, programs, resources, and major events. We have a quarterly newsletter called “Down in the Heart of Texas”, bi-monthly electronic news blasts and a resource packed website www.dsact.com . We also host multiple Yahoo Groups that provide forums to share experiences and support to other members.
Advocacy - We advocate for all individuals with Down syndrome on medical, educational, independent living, employment, estate planning, and legal issues.
En Español: Comite Latino - We provide support, resources, and social opportunities for the Spanish-speaking community as well as ensure that all of our materials are available in Spanish on our website.
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What we focus on
