Sibling Resources

Siblings play an important role in the lives of people with Down syndrome. During childhood, siblings provide friendship and companionship. In older adulthood, many siblings will become the primary guardian or caregiver for their sibling with Down syndrome. Throughout this unique journey, resources are available to support and provide guidance to siblings, their families, and the loved ones for whom they care.

Community Supports

Resources listed are not necessarily endorsed by DSAWM, but are a list of options that are available. If you know of additional West Michigan resources, please let us know at info@dsawm.org.

For Younger Siblings
Grand Rapids Area Sibshops provide an opportunity for school-age children and teens to meet other children who understand the unique experience of having a sibling with special needs, share their experiences and feelings, and learn more about their sibling’s special needs.

Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

Siblings Learn About Down Syndrome is a website offering resources to create workshops for siblings of those with Down syndrome. Materials include age-based activities covering a wide range of topics from handling behavior challenges and the benefits of having a sibling with Down syndrome to being a policy advocate. Activities include Human BINGO, Down syndrome Jeopardy, Sensitivity games and more.

Eyes Different Than Mine is a children’s book by local author and sibling Erin Johnson about the unique relationship between neurodiverse siblings
For Adult Siblings/Caregivers
NDSC Adult Sibling Program NDSC offers many workshops at their Annual Convention for adult siblings and caregivers. Additionally, their Adult Siblings Toolkit is available to download for free and designed to jump-start conversations with parents about becoming more involved in their brother or sister’s life. Siblings can use this information to be effective advocates and perhaps, caregivers, after their parents are no longer able.

MI-OCEAN (Michigan Older Caregivers of Emerging Adults with Autism and other Neurodevelopmental Disabilities) is a statewide project aimed at addressing the needs and health concerns of aging caregivers (age 55+) of adults with intellectual and developmental disabilities. The project uses a family support model to identify and address various issues that may negatively impact the health and well-being of aging caregivers and those that depend on them.

The NDSC Family Care Toolkit allows caregivers to record and keep all important information in one place relevant to the care for a person with Down syndrome. The toolkit is divided into 6 sections – Home, Family, Daily Living, Medical, Resources, and Emergency – which includes everything from how to use remotes to emergency medical consent forms.

Published by NDSS, the Aging and Down Syndrome: A Health & Well-Being Guidebook provides an overview of the medical and psychosocial needs that are unique to individuals with Down syndrome as they age. Physical copies are available at DSAWM.

Siblings Learn About Down Syndrome is a website offering resources to create workshops for siblings of those with Down syndrome. Materials include age-based activities covering a wide range of topics from handling behavior challenges and the benefits of having a sibling with Down syndrome to being a policy advocate. Activities include Human BINGO, Down syndrome Jeopardy, Sensitivity games and more.

For more information about caring for an aging person with Down syndrome, visit our Aging Resources page.

West Michigan Siblings Share Their Stories

Erin and Liam

Liam may have many adoring fans, but his sister is his biggest supporter. Erin shares the behind-the-scenes story of what it’s like to have Elvis for a brother.

Peyton and Chloe

15 year-old Peyton Brill understands the joys and difficulties that accompany having a sibling with special needs. Her little sister Chloe has Down syndrome, an eye-opening experience that has encouraged Peyton to become one of West Michigan’s youngest advocates for people like her sister.

Erin and Matthew

Erin’s brother Matt has a bright personality and mind. As she reflects on her brother’s ability to learn, Erin urges us to think outside the box when defining intelligence.

Chloe and Cale

As the only girl in a family of boys, Chloe spent most of her childhood enjoying the spotlight. After the birth of her little brother, though, she learned to embrace a new perspective.