The Future IS Bright for My Disabled Child

Marj Hatzell
16

Boys walking sepia
Hand in Hand through life together
When my husband and I first suspected our son Ian was autistic, we weren't sure what to think about his future. We had heard nothing but sadness, negativity, horror, and bleak pictures painted about what would happen to us when we were no longer around to care for him. When we were over the initial shock (okay, not so shocking, since we INSISTED he was autistic and no one would believe us. TOLD YOU GUYS! SO THERE!), we decided we had two choices: wallow in self-pity or get positive and get proactive.

We chose the latter route because we felt our child would be best served by channeling our energies into things that would help him and help our family. Since people call us a family full of Energizer Bunnies, I think you can figure out that we decided to channel our energy into positive directions. We're just awesome like that.

Here we are seven years later and while we are still hopeful, we are also realistic about what the future may hold. We have every bit of confidence that someday he may function on his own but we are planning in case he needs full care. We are saving for college but know that that money may be used for an adult day program. We hope that someday we'll hear him speak and that he will do things he enjoys but know that it is possible we will never hear his voice. It might be a good thing, our older child NEVER STOPS TALKING. Like, running commentary ALL. DAY. LONG. Think Rain Man. Sorta. Maybe Ian just doesn't have room to talk. Or his ears are bleeding from his brother's constant dialogue. One of the two.

This has been a metamorphosis for us. When we started out, our attitudes were (for lack of a better word) really crappy. We were scared. And even though I have a degree in Special Education and worked with children with autism and a variety of special needs, I really had no idea what we were in for. I'm usually the positive one. I'm usually the glass-is-always-full person. And one night, when I was crying about what we were going to do, my husband just said, "We're going to raise him just like we'd raise him if he wasn't autistic. We're going to love him just like he isn't autistic. This diagnosis changes nothing." He is so wise. And he was mostly right. But where he was wrong? It changed us.

boy in bed
That's OUR bed
We are no longer looking at a bleak picture, now it is a bright watercolor. We no longer dread his adulthood, we look forward to it while we cherish every moment of his childhood. We know we'll be okay. He'll be okay. We will continue to fight tooth and nail for him. We will continue to work for everything he deserves and more. Isn't that what "normal" parents do? Plan for their future and fight hard to get it? Autism is just a part of who he is. And we accept who he is. Mostly. We'd love it if he'd sleep past, say, 4 a.m? That would be GREAT, Ian!

Perhaps the best moment we had lately was one night when I was tucking in our older son. Luke has Asperger's/PDD-NOS (depends on which doctor and which way the wind is blowing and if the moon is in line with Jupiter). Luke has come a long way, fits in with his typical school peers (many of whom just happen to have spectrumy-things going on), and is a great student. We have every confidence that he will go to college. One night, Luke must have heard us chatting about Ian and college and using the money for long-term care in the event Ian doesn't use it. Luke was worried and asked what happened to kids like Ian when their parents died. So I told him. Group homes. Independent living. Institutions. Luke wasn't pleased. And when I bent over to kiss him goodnight, he told me, "Don't worry mom. When you and Dad die, I will take care of Ian. He'll be just fine." 

Indeed he will, son. Indeed he will.

 

Image via Marj Hatzell

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