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

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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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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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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 - Clinical Therapist, 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 resources

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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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Cardiovascular Complications of Down Syndrome: Scoping Review and Expert Consensus

Author: Dimopoulos et al. - Circulation (2023)

Abstract Cardiovascular disease is a leading cause of morbidity and mortality in individuals with Down syndrome. Congenital heart disease is the most common cardiovascular condition in this group, pre

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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   In January 2023, the Down Syndrome Medical Interest Group - USA (DSMIG-USA) shared a consensus update for fam

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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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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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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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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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Using First/Then Boards

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

We like to use visual supports to set or manage expectations. One type of visual support that can be helpful is a first/then board. When using a visual support, there can be words, pictures, or a comb

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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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Individualized Visual Schedules

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

Visuals tend to be most effective when they are individualized. What works for one person may be different than what works for another person. Schedules are one example of a type of visual that may va

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Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. (2022) - Journal of Neurodevelopmental Disorders

Abstract Background:  Down syndrome regression disorder is a symptom cluster consisting of neuropsychiatric regression without cause. This study evaluated the incidence of neurodiagnostic abn

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Using Games in Social Skills Groups

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

We have found that incorporating games into our social skills groups can help convey important messages as well as help participants practice appropriate social skills in a non-threa

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Obstructive Sleep Apnea, Cerebrovascular Disease, and Amyloid in Older Adults with Down Syndrome Across the Alzheimer's Continuum

Author: Lao et al. (2022) - Sleep Advances: A Journal of the Sleep Research Society (2022)

Abstract We determined the extent to which obstructive sleep apnea (OSA) is associated with increased cerebrovascular disease and amyloid burden, and the relation of the two processes across clinical

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Evaluation of Upper Airway Stimulation for Adolescents with Down Syndrome and Obstructive Sleep Apnea

Author: Yu et al. (2022) - JAMA Otolaryngology-Head & Neck Surgery

Abstract Importance :  Patients with Down syndrome have a high incidence of persistent obstructive sleep apnea (OSA) and limited treatment options. Upper airway hypoglossal stimulation has be

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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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