Continuity Of Caregiving: Preparing For An Independent Future For Your Disabled Child

Continuity of Caregiving: Preparing for an Independent Future for Your Disabled Child by Tom Klinedinst

I'm about to enter into a sensitive subject. I hear people say things like "I'm glad my autistic son has a younger brother who can always take care of him" and it really causes me to think long and hard. 

When we became pregnant with Samantha, I admit that one of the things we thought about was that Tyler would still have family after my wife and I are gone. With her being 17 years younger than him, under most scenarios she will outlive him. Practically everyone on both sides of the family are older than Ty, so we never wanted him to face a day where there could be nobody left to be family for him. 

This is a selfish thought on my part. Of course I am hopeful that, excluding any unknown future life events, Samantha will feel that she wants to be involved in Tyler's care someday, but in no way should she be held to that. She is entitled to her own feelings, her own time, and her own life. 

So when I hear people say that it will be left to the siblings to take care of them, I see this as a dangerous and unfortunate way out. I think for many caregivers they can't bear the thought of letting go of their child and trusting the system, so they comfort themselves by assuming another child will be willing to pick up the pieces. Its an understandable thing, after all it is an excruciating thing to think about the day that we can no longer care for our disabled child. It kept me up many nights wondering how he would manage after I was gone.

But let me be plain on this point....in my opinion, you are neither looking out for your disabled child, or their sibling, if you do not prepare for an independent future for both of them. Their sibling should not be relied upon to pick up the baton once you can no longer care for your disabled child. The sibling has every right to go to college if they wish, have a family, move to another state or country, and decide for themselves how they want to live their lives. Hopefully this means they will also want to help, and be part of a protective family unit for their sibling, but it cannot be a pre-arranged situation. Because in the end, the odds are being helpful will be replaced by feeling resentful, unappreciated, and used. 

If you have ever made those statements, or you truly believe it is OK to assume that a sibling will take over as a caregiver, you need to stop and reconsider the possibilities. All you are doing is serving your own self and your own guilt. You are trying to deny the fact that your own mortality will change the course of your disabled child's care. You are avoiding doing something that you know will be difficult. All of this at the expense of the disabled child and the sibling.

I hope and pray that Sam will always love her brother and want to be family for him until he is no longer here. I hope she wants to someday be willing to be a member of the team that watches over his interests. But Sam has a life of her own to live. That will be her choice. In the meantime we are setting up Tyler's life so that he can live without us if he has to. 

The choices have not been easy, but they have been the right ones for both of my children because I love them and respect them equally.
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You can read more from Tom on his blog site, My Walk With Tyler about his journey with his son, Tyler. His blog is intended to provide a voice to caregivers, especially those with disabled children. 

Photo: Tyler and his younger sister, Samantha, smiling and having a good time.

Tom Klinedinst

My Walk With Tyler is about my journey with my son, Tyler, and is intended to provide a voice to caregivers, especially those with disabled children. To be fair, I am not a therapist, or an expert on special needs, nor would I intend to pretend to be. My goal is to share all of the triumphs and heartbreaks that we have been through, especially during this transition into Tyler’s residential placement. Because there is no “manual” for caregivers to follow, we must help each other find the way. My hope is that through my advice, stories, and experiences that the reader can find nuggets to add to their own journey. To read more from Tom click here!