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

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Aging and Down Syndrome: A Health & Well-Being Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society. According to the Introduction, "Adults with Down syndrome, along with their families and caregivers, need acc

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Incidence and Clinical Outcomes of Pneumonia in Persons with Down Syndrome in the United States

Author: Janoff et al. - Vaccine (2023)

Abstract Background:  Persons with Down syndrome (DS) experience an increased risk of pneumonia. We determined the incidence and outcomes of pneumonia and relationship to underlying comorbidi

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Finding the Right Job for Me

Author: Katie Frank, PhD, OTR/L and Valerie Schlieder, OTD, OTR/L - Adult Down Syndrome Center

There are many things to think about when we are looking for a job that is right for us. The visual linked below describes a variety of potential jobs and job settings, provides a list of questions to

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Aging and Life Expectancy

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

Today, people with Down syndrome (DS) are living longer and healthier than any other time in the past. In 1900, the life expectancy of people with DS was 9 years. By 1984, the life expectancy

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Calming vs. Coping Strategies

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

What is the difference between calming and coping strategies? Many times, we use the terms "calming" and "coping" interchangeably. There is often overlap in the str

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Tips for Being a Successful Employee

Author: Adult Down Syndrome Center

This handout shares tips for individuals with Down syndrome to be successful in the workplace.

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Eating Refusal

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

We received the following question:  I have a son with Down syndrome. He had testicular cancer in his late 20s. Since then, he seems to have developed an eating disorder. He always feels he i

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Visual Schedule Apps

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

Visual schedules help an individual know what to expect. The schedule can be a list of activities for the entire day, only the morning or evening routine, or even the chores that need to be done. This

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Information Forms to Share with Hospitals and Clinics

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

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Tips for Going Up and Down Stairs Safely

Author: Katie Frank, PhD, OTR/L and Abby Rowley, LCSW - Adult Down Syndrome Center

Going up and down stairs can be challenging for some people with Down syndrome. Aging, differences in depth perception, unsteady gait, and other issues may contribute to difficulty with navigating sta

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End-Of-Life and Down Syndrome Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society (NDSS). According to the Introduction, the aim of the guidebook is to "provide guidance for the crossroads and

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Self-Talk Visual

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

The visuals under the headers explain what self-talk is and why we use it. Tap or click on the headers to find printable versions for girls/women and boys/men. There are also versions for dif

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Contingency Maps

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

Contingency maps can help an individual visualize their behavioral choices and the outcomes/consequences of their behaviors. They can help make the problem-solving process more concrete. The individua

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Perspectives on Pain in Down Syndrome

Author: Shaikh et al. - Medicinal Research Reviews (2023)

Abstract Down syndrome (DS) or trisomy 21 is a genetic condition often accompanied by chronic pain caused by congenital abnormalities and/or conditions, such as osteoarthritis, recurrent infections, a

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Behavior Changes in Individuals with Down Syndrome Webinar Recording (2/23/2023)

Author: Brian Chicoine, MD, Katie Frank, PhD, OTR/L, and Abby Rowley, LCSW - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD, Katie Frank, PhD, OTR/L, and Abby Rowley, LCSW, on February 23, 2023. In this webinar, the presenters define, iden

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Friendship Resources

Author: Adult Down Syndrome Center - Resource List

Our Resource Library has several resources on developing and maintaining healthy friendships for individuals with Down syndrome and their families and caregivers. Having meaningful relationships can p

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Acrocyanosis

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

What is acrocyanosis? Acrocyanosis is the bluish discoloration of the extremities (usually the hands and/or feet) due to decreased oxygen being delivered to those areas. The small blood vessels in the

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Plan For Managing My Emotions

Author: Adult Down Syndrome Center - Visual Handout

When we talk about emotions during our social skills groups for adolescents and adults with Down syndrome, we explain that it is ok to feel any emotion; however, it is not ok to have negative

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Long COVID in Adults with Intellectual Disabilities

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

A complication of having COVID-19 infection is a condition called long COVID (it has also been called long-haul COVID, chronic COVID, post-COVID conditions, and others). The National Task Group on Int

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Boundaries

Author: Abby Rowley, LCSW and Katie Frank, PhD, OTR/L

This visual handout explains what boundaries are and how to set them.

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Stop, Think, Make a Good Choice - Conflict

Author: Katie Frank, PhD, OTR/L and Abby Rowley, LCSW

This visual handout from our social skills group explains what to do when there is a conflict.

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Things I Can Do to Help Me Calm Down

Author: Adult Down Syndrome Center

This visual handout shares activities you can do to help yourself calm down.

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Managing Conflict

Author: Katie Frank, PhD, OTR/L and Abby Rowley, LCSW - Adult Down Syndrome Center

Being able to manage conflict effectively is an important skill for having healthy relationships. The handouts pictured and linked below are from our social skills groups for individuals with Down syn

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"I" Statements

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

"I" statements are a way to share how we feel in a clear, calm, and respectful way. The handouts pictured below explain the components of "I" statements. There is a

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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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