My sister was born with severe cerebral palsy. I’ve known for many years that when the time comes for our parents to no longer be around, I will need to manage her care.
If you’re a parent of a disabled and typical child who is wondering about the future, here are ideas from adult siblings who are too.
Preparing from the start
Shannon Greenleaf’s brother was born prematurely and has various disabilities – never fully diagnosed – as a result. Greenleaf became her brother’s guardian when she was 19 and he was 21. She explains, “I have always been very involved with Patrick’s care all his life as well as transitioning him into a group home. I sit on the board, and I am on an advisory board for Mental Health. Being in hospital administration, I have access to a lot of resources as well. I don’t really worry about having to take care of him, because he is in a group home. In the far reaches of my mind I worry about what would happen if it went under. I am fully equipped and ready for the challenge should that happen.”
Read more about parenting a disabled child when another child isn’t disabled>>
When your typical child is older, be sure to talk to him more in-depth about what the future may hold. Your typical child will need specifics about the logistics of his sibling’s care – from housing and finances to education and medical care. These conversations can be tough, but preparing for the future is one of the most important things you can do for all of your children.
Troy McClain’s sister has developmental delays and profound deafness. “Today, we have set plans in motion for her to move into our home full time when my mother is no longer able to take care of her daily needs,” he explains. “In order to cut down on the transition and interruption of routine, we have set up a room in our home designed and created by her where she stays the night with us once a week. It’s presented as a “break from Mom” night. Additionally we plan 7 p.m. dinners once a week at our house that she gets to lead and organize.”
When I think about the inevitable future, I’d be lying if I said I don’t sometimes get stressed out. It helps to have had conversations with my mom so I know what to do when the time comes.
It also helps to have a strong marriage and support from my husband, who also has a brother with learning disabilities as a result of a head injury during childhood. While our siblings’ issues are monumentally different, my husband “gets it.”
Read more about special needs kids and well siblings>>
Greenleaf says, “Marrying into a family with someone with special needs, I know that I would have a very strong support system. The way we were raised has always prepared us for taking care of Pat. We were raised to be his protectors and we have prioritized him like we would our children. I wouldn’t have it any other way.”