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For people with Down syndrome, family members, caregivers and professionals.

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Resources for Siblings

Author: Adult Down Syndrome Center - Resource List

The resources in the Families and Caregivers  section of our Resource Library are intended for a broad audience of parents, siblings, friends, and caregivers of individuals with Down

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Emergency Preparedness Resources

Author: Adult Down Syndrome Center - Resource List

Recently, we were asked about emergency preparedness and safety resources for people with Down syndrome. We started to research the topic and found numerous resources that may be helpful to people wit

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Health Benefits of Chores

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Just thinking about chores can make us want to groan but doing chores can be beneficial for our physical and mental health. Doing chores is one way to incorporate more physical activ

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Resources on Developing Greater Independence

Author: Adult Down Syndrome Center - Resource List

Becoming more independent is a goal for many adolescents and adults with Down syndrome. This goal may vary significantly from person to person. It can range from wanting to become more independent wit

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Diagnostic Overshadowing: "All Is Not Down Syndrome"

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is jus

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Bias in the Health Care System: Advocating for People with Down Syndrome Webinar (10/19/2022)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Brian Chicoine, MD, presented a webinar called "Bias in the Health Care System: Advocating for People with Down Syndrome" on October 19, 2022. The webinar was hosted by LuMi

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People Living with Down Syndrome in the USA, Europe, Australia, and New Zealand: Births and Population

Author: deGraff, Buckley, and Skotko - Fact Sheets

The fact sheets linked below share estimates of the numbers of babies born and people living with Down syndrome in the United States and Europe.  USA Fact Sheet   Last updated Novemb

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Overview and Types of Respite

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

Respite care is short-term relief for primary caregivers. It can be used for as short as a few hours to as long as several weeks. Respite care can be provided in a variety of settings including the in

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Respite Organizations and Providers

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

The list below includes information about respite organizations and providers in the greater Chicagoland area and/or Illinois. The types of respite provided are also included: In-Hom

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Adult Sibling Toolkit

Author: National Down Syndrome Congress - Resource

The Adult Sibling Toolkit from the National Down Syndrome Congress is a tool for adult siblings who are preparing to become more involved in the support and care of their loved ones with Down syndrome

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Traveling the Road Towards Independence Webinar Recording (12/14/2021)

Author: Lina Patel, PsyD - Down Syndrome Association of Delaware

On December 14, 2021, the Down Syndrome Association of Delaware hosted a webinar called, "Traveling the Road Towards Independence." The presenter was Lina Patel, PsyD. View recording

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Gout in People with Down Syndrome

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Gout is more common in people with Down syndrome (DS) (as indicated by the studies at this link  and this link ). Gout is a type of inflammatory arthritis caused by

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Family Care Toolkit

Author: National Down Syndrome Congress - Resource

The Family Care Toolkit linked below is a resource created by the National Down Syndrome Congress with the support of the Global Down Syndrome Foundation. It helps families and primary caregivers gath

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Ten Tips for Surviving the Holidays

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

It’s holiday time and many people are busy decorating, baking cookies, shopping, and planning family celebrations. There are often significant changes in routine and breaks from school or da

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Modeling, Imitation, and Mutual Participation

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Observing someone demonstrate appropriate behavior, watching a parent or friend model healthy activity, or having a mentor to observe and imitate are all ways we learn a variety of healthy behaviors i

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People First

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

When we started the clinic, families spoke to us about what they needed as well as what they expected and what was most likely to help us connect with families and people with Down syndrome. One of th

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Memorial/Life Celebration

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

I spoke at a patient’s memorial/life celebration a few days ago and I would like to share some of my words. I would like to go back to 1954, the year Don was born. Life expectancy of a perso

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Expectations

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

As we mention in our resource on Two Syndromes , there seem to be four main reasons for the differences noted in the different generations of people with Down syndrome – expectations , life

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Goals

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

As we mention in our resource on Two Syndromes , there have been changes over time that have contributed to some of our families with younger children with Down syndrome not relating to the l

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Life Expectancy

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

As we mention in our resource Two Syndromes , there are four main areas that we see are affecting people with Down syndrome in a positive way. The effect has been so great in some situations

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Opportunities

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Over the years, some families have approached us after presentations and reported they couldn’t relate to a story or a point we made. We have found that it was typically a family of a younge

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Two Syndromes

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Occasionally, after a presentation, someone will come up to Dr. McGuire or me and tell us that they can’t relate to some point that we made. After hearing this a few times, a pattern became

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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