Wednesday, August 28, 2019

Relief for worries about your child with disability's future: Here you go

Last week Andrew Pulrang, a wise and kind disability blogger I've connected with online, wrote a great piece for about why he's optimistic about kids with disabilities today. It was seriously inspirational. But there was one point he made that was a real perspective changer for me.

Andrew raised the questions many of us parents have: How can a child who can't walk or feed themselves ever hope to live a typical adult life? How can a child who can't speak or dress themselves or who can't manage simple finances ever get married, get a job, or even go to the store on their own? 

Yep. These questions have been on my mind since Max was a little guy, and they press on me even more as he's gotten older. At times, they have me lying in bed, awake and anxious.

Andrew went on to give answers. "The type of one's disability does not determine their potential for independence and happiness," he said. He noted that true independence isn't about total self-sufficiency or doing everything for yourself but, rather, living life on your terms with the right support and adaptations: "People with disabilities can achieve meaningful independence, whatever it may look like for that given person."

As parents, we get used to figuring everything out for our children. We so desperately want to enable them, help them reach their potential and make sure they are included in all that life has to offer in a world that doesn't always make it easy for them. And you are so grateful for those times when they flex their independence. In recent history, I've been gleeful about everything from Max taking his own dirty bowl off the table to going for a walk on his own in our neighborhood.

But one giant step toward a child's independence is your own step, as a parent, to realizing that making it happen will be a joint effort. As fierce and fearless as you have been about ensuring that your child gets what he needs and deserves, there will come a time when your child can let you know what it is he needs and deserves to thrive. This is a major mindshift. You need to transition from the person who has been making the decisions on your child's behalf to letting your child steer their life.

This is not to undermine the major undertaking that it will be for your child to someday have an independent life, or how worrisome it can be. There are so many questions, including the biggest ones of them all: Will my child live away from us? What sort of independent living situation might work for him? How will we swing that financially? But then, it is a relief to consider that while you will be doing the legwork, you will not be alone; your child can and should participate in the decisions, big and small.

Decision-making is empowering for children of all ages, and we've always tried our best to involve Max. Before he could speak words or use augmentative communication devices, we had a three-ring binder with different sections—food, toys, clothes—and pages of laminated photos I'd taken and PECS pictures that he could point to. The biggest decision we've made in recent years is choosing a high school for Max. I made a list of possibilities; Max toured every single one and shared his thoughts. Emotions, too; he so loved one school that when it came time to leave, he stood in the lobby and sobbed as the principal patted his back and said "Max, I think you'll be coming here." And he did.

Whatever the future holds, as overwhelming as it can seem, the load on your shoulders will feel lighter when you consider that that the future shouldn't be your idea of independence—it should be your child's. Because after all, that's what matters most.

Thank you, Andrew.

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Thanks for sharing!

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