Down syndrome & Mental Health Support Group
To get more information or to join our email distribution list to be kept informed of upcoming meetings, resources, etc., please email us.
Does your teen or adult loved one with Down syndrome also have a mental health diagnosis such as Depression, Anxiety, Obsessive-Compulsive Disorder or Bipolar Disorder? Often these illnesses bring on a change in daily living skills, mood, or interest in activities once enjoyed. Seeing these changes and regression in your loved one can be very difficult.
The MDSC offers monthly meetings for family members who have a loved one with Down syndrome and a mental health diagnosis. Every other meeting is facilitated by Mary-Frances Garber, a licensed genetic counselor providing supportive genetic counseling in her private practice, Listening, Reflecting, Healing in Needham. She has been a consultant with the MDSC for the past 6 years providing insight and support to many families.
Please note that individualized psychiatric treatment will not be provided at this meeting. This meeting is meant to serve as a venue for families with loved ones with Down syndrome and mental health concerns so that they may obtain mutual support with professional supervision.
We have a private Facebook group to connect with other parents and caregivers, share resources and obtain mutual support. To join, please email us.
Down syndrome and Mental Health Resource List
Many of the resources below- and more- are included on our Resource Library.
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- Adult Down Syndrome Center, Illinois – Type mental health in the ‘Search Resources’ box to access patient handouts and articles on mental health from founding physicians Dr. Brian Chicoine and Dr. Dennis McGuire and the team at Advocate Medical Health’s Adult Down Syndrome Center located at Lutheran General Hospital
- www.familyaware.org – Families for Depression Awareness, located in Waltham. Offers education, training and support to help families recognize and cope with depression and bipolar disorder.
- www.thenadd.org – An association for persons with developmental disabilities and mental health needs
- www.namimass.org – National Alliance on Mental Illness, Massachusetts Chapter. Not specific to individuals with intellectual/developmental disabilities
- www.nami.org/Find-Support/Family-Members-and-Caregivers – National Alliance for Mental Illness, resources for family members and caregivers
- www.psychologytoday.com – has a ‘find a therapist’ tool
- Directory of MA and RI Therapists of Color – a public list created by two local social workers and activists
Guided Audio/Visual Tools
- Cosmic Kids Zen Den – 6-10 minute videos on mindfulness for kids; available here on YouTube
- I Can Relax – Songs by Donna Pincus; available for download on Amazon; individual tracks may also be found on YouTube for free
- www.gozen.com – Learning programs to help youth learn coping and resilience skills; uses animated videos to teach lessons
- www.frcma.org/locations – Family Resource Centers located throughout Mass (for families with children under 18); they can provide support groups, information and referral, and education.
- www.caregiver.org – Family Caregiver Alliance
- www.caregiveraction.org – Caregiver Action Network
- https://archrespite.org/respite-locator-states?true&prox_country_id=1228&prox_state_province_id=1020 – National Respite Network, has a respite locator tool
- www.rewardingwork.org – Massachusetts Respite and Personal Care Assistant (PCA) search tool
- www.ocdmassachusetts.org – Massachusetts Affiliate of the International OCD Foundation
- www.iocdf.org – International OCD Foundation; has a find a therapist/clinic/support group search tool
- www.abct.org – Association for Behavioral and Cognitive Therapies; has a find a CBT Therapist search tool
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Mental Wellness in Adults with Down syndrome: A Guide to Emotional and Behavioral Strengths and Challenges, Dennis McGuire, Ph.D. & Brian Chicoine, M.D.; First edition (2006) available here. 2nd Edition (2021) available here.
In this groundbreaking book, the founding directors of the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge, Illinois the first and premier facility of its type in North America share nearly 30 years of combined experience treating more than 3,000 adolescents and adults with Down syndrome aged 12 to 83. MENTAL WELLNESS is an invaluable resource for parents, mental health professionals, teachers and caregivers who want to understand better how to promote mental health and resolve psychosocial problems in people with Down syndrome.
When Someone You Know has Depression – Words to Say and Things to Do, Susan J. Noonan, MD, MPH; Available here on Amazon
In When Someone You Know Has Depression, Dr. Susan J. Noonan draws on first-hand experience of the illness and evidence-based medical information. As a physician she has treated, supported, and educated those living with?and those caring for?a person who has a mood disorder. She also has lived through the depths of her own mood disorder. Here, she has written a concise and practical guide to caring for someone who has depression or bipolar disorder. This compassionate book offers specific suggestions for what to say, how to encourage, and how to act around a loved one?as well as when to back off… She also explains how to reinforce progress made in therapy, how to model resilience skills, and how caregivers can and must care for themselves. Featuring tables and worksheets that convey information in an accessible way, as well as references, resources, and a glossary, this companion volume to Dr. Noonan’s patient-oriented Managing Your Depression is an invaluable handbook for readers navigating and working to improve the depression of someone close to them.
For Parents and Caregivers: Self-Care is Putting on YOUR Oxygen Mask First, a tip sheet from the Family Advisory Board at UMASS Medical School’s Transitions to Adulthood Center for Research.
What’s Going On?: How to Tell When They Can’t Tell You: A Manual for Caregivers of People with Intellectual Disability and Behavioral Issues, Marie Hartwell-Walker, Ed. D.; Available here on Amazon
Behavior always makes sense. It is up to those of us who provide care to understand what kind of sense it is making. This workbook is a comprehensive training manual that offers a structured step-by-step model for analyzing what is going on when someone with intellectual disability and limited verbal skills shows a change in behavior or mood – and suggests what to do about it.
I Feel Worried! – Tips for kids on overcoming anxiety, Nadine Briggs and Donna Shea; Available here on Amazon
The I Feel Worried workbook provides simple, actionable and proven tips to help kids manage anxious feelings. In this workbook, your child will learn: • that anxiety is a normal and sometimes necessary emotion we all experience; • how to understand and label feelings; • how to identify the physical sensations of anxiety and implement strategies before the fear becomes too strong; • calming exercises to choose when anxiety-provoking situations arise; • effective coping skills and specific strategies to manage anxiety; • that he or she has the power to overcome anxious thoughts and become an expert worry ninja.
I Get Panic Attacks. Now What? (Teen Life 411), Anne Spencer; Available here on Amazon
Panic attacks and anxiety affect nearly everyone at one point or another during adolescence. This fact-filled volume explains what panic attacks are in exact scientific terms so readers can tell the difference between general anxiety and a true panic attack. Further, this valuable resource describes the medical causes of attacks, the different types, treatments, and some general ways to manage anxiety.
Shy Spaghetti and Excited Eggs: A Kid’s Menu of Feelings, Marc A. Nemiroff, Ph.D.; Available here on Amazon
Starving the Anxiety Gremlin for Children Aged 5-9: A Cognitive Behavioural Therapy Workbook on Anxiety Management (Gremlin and Thief CBT Workbooks), Kate Collins-Donnelly; Available here on Amazon
Based on cognitive behavioural principles, this workbook uses fun and imaginative activities to teach children how to manage their anxiety by changing how they think and act – getting rid of their Anxiety Gremlins for good! Bursting with stories, puzzles, quizzes, and colouring, drawing and writing games, this is a unique tool for parents or practitioners to use with children aged 5 to 9 years.
The Great Big Book of Feelings, Mary Hoffman; Available here on Amazon
Magination Press – http://www.apa.org/pubs/magination/
About Magination Press®
In 1987, Magination Press® was created out of a desire to publish innovative books that would help children deal with the many challenges and problems they face as they grow up.
Written for ages 4 through 18, these books deal with topics ranging from the everyday — starting school, shyness, normal fears, and a new baby in the house — to more serious problems, such as divorce, attention deficit disorder, depression, serious injury or illness, autism, trauma, death, and much more.
Most of our books are written by mental health professionals or those who work closely with them and with children. Our books help children understand their feelings, provide information about the topic or situation, and offer extensive practical coping strategies. A comprehensive Note to Parents is usually included to help guide parents, therapists, social workers, and teachers in using the book.
Magination books are not preachy or didactic: They feature sensitive, lively, sometimes humorous writing, along with exquisite, evocative illustrations. They are a pleasure to look at and to read.
In 1997, APA acquired Magination Press. As the world’s largest and most prestigious publisher of books in psychology, mental health, and development, we at APA are proud and delighted to publish Magination books.