None of us knows for certain what the future holds for our child. But trusting God with your child’s future bumps up a whole ‘nother level when you have a child with special needs.
It’s been over a decade since we attended the autism family camp here. It was an interesting experience. There were other families with kids at various points on the autism spectrum. Though there were some similarities, some common things we experienced, each kid on the autism spectrum is unique.
This camp was really just an overnight experience for families in the community, put on by the local chapter of the Autism Society. There was some socializing to help us connect and then some sessions or mini-seminars on a variety of topics. The speakers were from local organizations that offered resources to families. There was a lot of useful, helpful stuff gleaned from them.
One seminar, however, knocked the wind right out of me. I don’t even remember what the whole thing was about. I only remember the moment when the speaker started talking about the need to get legal guardianship for your child before they turned 18.
You see it isn’t assumed that moms and dads are responsible for a special needs adult child anymore. Before Ryan’s 18th birthday I have to pay a lawyer to draw up papers and go before a judge to get myself named his guardian. Otherwise, employers, social service agencies, and healthcare professionals will not include me in decisions about him or even talk to me.
This camp was the first time I learned that. And Ryan was only 5 or 6 years old.
As this woman talked in a matter-of-fact voice about how to legally care for a disabled adult child, the air got thin. It got hard to breathe. The room started spinning. I remember that I got up and left the seminar, headed to the bathroom. I remember thinking, “I can’t think about this yet. Oh God, what if he’s not ‘better’ by the time he grows up?”
It was the first time I considered that all the therapies and diets and hard work might not help my son live on his own someday, might not help him be “normal” someday. That thought devastated me.
I did not go back into that seminar. This was possibly the only time on my journey as a special needs mom that I fled instead of standing and facing things head on. Nope. Not gonna think about that right now. We have time. We will cross that bridge if and when we come to it. I remember telling my late-husband when he came out why I’d fled. I just couldn’t think about this yet. He understood.
My son is 17 now. He started his summer job this past week. It is the second summer he’s done this. There’s a state program that helps find jobs for disabled teens and adults and pays them to encourage employers to try out disabled employees. Ryan loves having a job. He loves being productive and making money that is all his. But the conversations with his job coach are reminders that his limitations have real impacts on the kinds of jobs he holds.
He needs frequent breaks. He needs a job with clear expectations. He needs supervision to make sure he’s staying on task. He needs someone willing to be patient. He needs a job with enough to do that his mind doesn’t wander.
He will be a senior in high school this year and we have to start making preparations for a special program that will help him transition from school to the workforce or vocational school. Can I just tell you that’s scary on a different level than helping his older brother prepare to head out-of-state to college? I want him to find a way to be all he is capable of being but that journey is complicated significantly thanks to autism.
As unique as this is, I think the key to facing an uncertain future for my special son is the same as the rest of my children: God can be trusted.
I need to return to that again and again when fear and “what ifs” raise up. God loves my son more than I ever could. He has a plan and a purpose for him that is unique as he is. And God promises to give wisdom generously to all who ask—including a mama needing to know how to direct her almost-grown son with autism. God can direct my path. God can find a place for him that is good and beneficial and utilizes his bright mind while making allowances for his special needs.
Parents, if you have a special needs child, let me encourage your heart today. God loves them. God loves you. He can be trusted with their future even when it is around a corner we can’t see. He can give YOU wisdom for the next step. Sometimes that’s all we get—the next step. Oh that can be frustrating. I would love for God to give me the next five years for him all planned out. Right? I mean wouldn’t that be awesome. But could we really handle it all at once? Probably not. God knows and loves our special kids and learning to trust that truth can be the foundation for facing uncertain futures.
What is one way you’ve had to trust the uncertain to God when it comes to your child? I’d love to hear in the comments.