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

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Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

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Celiac Disease

Author: Robert Campbell, DO and Brian Chicoine, MD - Family Medicine, Advocate Lutheran General Hospital

Key Points Celiac disease is caused by a sensitivity to gluten. It is more common in people with Down syndrome. It can be diagnosed through an assessment including a history, physical, blood work, and

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Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry (2023)

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

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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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Staff Turnover

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

For people living in a group home or participating in day programs, the staff members often become like family. This is especially true if the person does not have other family involved in his life bu

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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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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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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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Regression & Down Syndrome

Author: National Down Syndrome Society - Website

The Regression & Down Syndrome page  on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and

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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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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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Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

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Constipation in Down Syndrome

Author: Samantha Ghanayem-Bouikidis, MD and Brian Chicoine, MD - Family Medicine, Advocate Lutheran General Hospital

Video Watch a video clip about constipation  from our webinar At-Home Treatments for Common Health Conditions.   Constipation is a common problem in people with Down syndrom

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Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

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Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

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

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain (more information can b

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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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