Siblings and family dynamics
The seeds of a sibling relationship are planted early in a family member’s life. Siblings will watch and respond to their parent’s interactions, feelings, supports and to how they include or exclude the brother or sister with disabilities.
Our experience has been that when parents have involved their children at an early age, they naturally recognize that they will be involved in some way and at some point in their sibling’s life. In cases where parents have not involved all their children, or sometimes exclude their children, we find that siblings do not have a tendency to be involved in the future planning. This is simply because they do not know how to be involved differently than before. They may find it challenging to do something that they are unaccustomed to doing—being with or caring for their brother or sister with disabilities.
We suggest that you try to seek opportunities and to nurture the sibling relationship. While this will be different for each family, based on your child’s abilities and the needs of their disability, try to make sure they are engaged and find ways to be part of the family and to have fun together.
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Communicate often, and at age-appropriate levels, about your plans and let them express about their plans for the future. Taking time to invest in these conversations will help guide their planning and actions when thinking about the future.
Sibling Planning Stories
My 44-year-old brother was living at home with my aging parents. Their plan was that he would continue to live in the family house or live with me when my parents died. Until I attended an adult sibling support group, I never knew that there were options available to us.
I became involved as his advocate and served on various boards and committees to learn as much as I could about options. With the information that I learned, I was able to help my parents and my brother move forward in planning for his future today, while my parents are still alive. He is now living in a supported apartment in town, enjoying his independence, while my parents are proudly seeing his abilities soar. We are all in a much better position to anticipate and support his future needs.
In our family tradition, you do not leave home until you are married. My sister Suzanne has Down syndrome. She did not get married, and she still lived at home when my mother was well into her 80s. Suzanne was able to help with the household chores, and her assistance was the primary reason that our mother could still be in her own home. They helped each other.
When my mother died, we had not really talked about Suzanne moving out of the family home and into her own home. The unofficial plan was that she would move in with me and my family in another state. To the surprise of all of us, Suzanne was adamant about not moving out of the family home and away from her friends, her work, and the community that she was familiar with. We had to figure out a way to provide caregivers who would move in with her and help her live the life she wanted. But we never thought to ask her before. I wish we did, so we could have made things easier for all of us.
