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Tuesday, March 31, 2015

Setting Long-Term Goals For Your Special Needs Child

My daughter turns fourteen on Thursday. Fourteen! Good Lord, where did the time go? She's already chosen her freshman year courses, and she's skipping electives and doubling up on Science and Math, hoping to graduate a year early. She wants to be an astrophysicist or a Cosmologist. She just wrote Stephen Hawking a fan letter and asked him for college recommendations.

And no, I'm not making that up to sound like I'm Mother of the Year. This is my kid, and I am overwhelmingly proud of her and her phenomenal brain and her guts and her kindness and her outstanding sense of humor.

She's going to go far. Very, very far. As far as she wants to go.

And then there's David.

David, who may or may not ever live independently. David, who may or may not be able to hold a job that would pay him a living wage. David, who definitely has autism.

That's simultaneously the most uncertain and wonderful thing about David: I don't know how he's going to shake out.

That's true for all your kids, by the way. Anna's talking astrophysics today but she's also talking about taking a year off after high school to backpack Europe. Who knows? She's only fourteen. Her life is going to take her where it takes her, shaped by the decisions she makes as she lives it.

But David...

His life is going to be shaped, to some degree, by his autism. Always and forever. It will influence the type of work he does and how he does it. It will influence the way he lives and maybe even the "where."

I look at him and sometimes I wonder how he'll ever live alone. He's so easily led, and could be taken advantage of with no effort at all. He's afraid of the stove - how will he ever cook for himself? He won't remember to take medicine, if he ever has to take any. He won't realize he's playing music too loud or his talking to himself on the stairs freaked out the neighbor's kids and now the parents are watching him for the slightest infraction, ready to dial a phone and get him in a world of trouble he can't even begin to understand.

These are the nightmare scenarios that play in your mind, when you know that someday, someday, your kid will have to navigate the world without you.

But on the other hand....

How many times have I thought, "Oh, he'll never learn to ___________. He just can't think that way."

And he does. He learns it and he masters it, and he does it when he's good and ready. David is on no one's time table but his own. How many times have I sat at a parent-teacher conference utterly amazed as they lay out the papers he's written, the math tests he's passed, the projects he's completed? How many times will his aide and his learning support teacher tell me about the socialization breakthroughs and the friendships he shares?

The truth is, I'm more likely to hold him back than his autism. And that's something I need to work on. I have to do my best to make him ready.

And so last weekend, he cooked his first grilled cheese sandwich on the stove. And we talked about what he wants to do when he grows up. And when he gets up into high school, he'll be in a good vo-tech program and he'll learn a skill or two. It's an ongoing conversation, and we'll keep having it, because it's important to remember that he wants a life of his own, too, even if he won't let me be in the bathroom by myself for more than five minutes.

He'll learn it all when he's ready to learn it, and I'll be here to nurture and cheer and guide and hope and pray and tell myself to back the hell off.

Today, he wants to be a waiter, or maybe build battlebots and have his own Baymax. I told him he could do it, if he works at it. If he dreams it and tries for it. If he can only just -

And then I told myself to shut up.


Ellie's journey with her son David has been one of joy, patience and discovery - one that changed the very framework in which she used to view autism. Through David's eyes, she's learned that an autism diagnosis isn't the end of the world - it's just the beginning of an interesting new one.
Available at Amazon for Kindle - and Smashwords for all e-reading device.

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