Parents, you’ve got questions, we’ve got answers.

Or just as likely, we’ve got questions and you’ve got answers.

Challenge: Open Discussion

And Still, I Hope

0
Vote up!
Share on Facebook Share on Twitter Email this article

My son Jack is 13 years old, and he has autism.

His brain is wired in a different way.

Because of this, he doesn’t read social cues or fully comprehend language or understand why you shouldn't ask a woman if she is pregnant.

On top of that, he is anxious.

So people make him nervous.

Loud noises make him jump.

He has to check where I am in the house, oh, a million times an hour.

And then he has a little bit of what’s called sensory processing disorder. He has to touch all of his food with his fingers to make sure he likes how it feels before he puts it in his mouth.

Plus, he is always trying to regulate his body through self-stimulation. He rubs his hands together fast, like he’s warming up by a campfire. He hops all the time.

I have been thinking about this boy and his future and his anxiety and his obsessive habits for thirteen years. Not a single day has passed when my stomach hasn’t squeezed together.

The thing is, lately, it feels like we are a little bit stuck. He’s not really getting any better.

I mean, I knew he was never going to get better in the traditional sense. He was never going to be cured of autism, or healed, or shed his diagnosis like the skin of a snake. It’s just that, at this point, we have been working on some of his behaviors for years.

Swearing.

Not touching all the food on his plate.

Not touching all the food on my plate.

Boundaries.

Flexibility with the radio station in the car.

Flexibility with what we watch on television.

Flexibility in general.

See, raising a child with autism is kind of like going for a boat ride in the wide, open water. One minute it’s all smooth sailing—the radio is playing softly, no one is screaming F&^%--and all of a sudden, you come to an abrupt stop, like the anchor has dropped.

Right now, in our little boat, we are standing still. We have not moved forward a single inch against the tide.

If I had to be honest, we’ve been standing still for a long time. And this standing still, it might just be the hardest thing for me. I don’t know.

Is it harder than all the nights my husband Joe and I stayed awake, passing our infant son back and forth between us and trying to avoid each other’s eyes?

Or researching a bunch of different medications to help alleviate his crushing anxiety?

Or telling him one hot summer afternoon that he was going to a different school?

I don’t know.

I’m tired of thinking about it.

I’m tired of autism.

I’m not tired of the boy. Oh no, of course not!

Well, maybe I’m a teensy bit tired of the boy. But mostly I’m tired of autism.

I’m tired of trying to keep him occupied all weekend when my four other kids have a bunch of activities and birthday parties and sleepovers, and he has nothing to do.

I’m tired of worrying if he’s going to grow a third eye from taking medicine before bed every night.

I’m tired of telling him to use his good words and asking him not to scream and trying to figure out how to get him to stop organizing the DVD's all afternoon.

At the same time, I love him. I love him, can you see that? I love him so much.

But some days, I wish I knew where all of this was going.

Oh, I know, I just have to hope. Don’t worry, I know all about the hope. I have strapped hope to my back and lugged it up big, steep mountains. I have kept it warm and dry on rainy days, and admired it in the bright sunshine.

Hope is the fishhook in my mouth, the carrot ahead of the donkey, a rusty anchor at the bottom of the sea.

And after the hoping, here we are. We are rocking in our boat, beneath the angry glare of an orange sun. No progress. No change. No movement forward.

In the meantime, I go about my day.

I listen to Hamilton on the treadmill.

I murmur Namaste at the end of yoga class.

I cook my repertoire of basic meals—pork chops and meatloaf and, if it’s warm enough, chicken or steak on the grill.

But inside, I am smothering a small storm. I am cycling through my list of worries on the Autism Balance Sheet—you know about the Autism Balance Sheet, right? It’s an ongoing tally of goals and progress and setbacks and research and doctor’s appointments that people like me, who are raising kids with autism, keep in our head.

Anyway, I scan down The List and I decide which one I want to focus on for the day, or even the week.

Lately, it’s been a high school diploma. You see, I’m not so sure Jack is going to get one.

All this time, my husband Joe and I were determined to help him graduate from high school.

No, that’s not true. We were determined to make him graduate from high school. That was our ultimate goal—the prize that kept our eyes, so to speak. Except it’s not looking so good right now.

Do not, for one hot second, get me wrong. Jack is not stupid. He is not a dummy. And yet he will likely never understand algebra, or write an essay longer than two paragraphs, or complete a senior project.

And honestly, what is the point? What is the point of agonizing over formulas and having screaming matches about whether or not a = b? Is that really the best use of our time with this child?

I actually pictured his high school graduation. Can you believe it? I actually thought to my dumb self, if we can just get him to graduate and cross that stage then it would all be better. He’ll be better, and this will be somewhat behind us.

This is never going to be behind us.

And still, I hope.

I mean, as parents, we all have to give up on dreams.

Maybe you dreamed your son would be an architect just like you, but the first time you saw him build a tower out of Legos, you knew it was a long shot.

Or maybe you dreamed your little girl might grow up and be a doctor, but she is terrified at the sight of blood, so you had to readjust a little.

But how many of us can say we have given up on the dream of a high school diploma?

I can’t do this forever. Is that a terrible thing to say? I know it is. But it’s true. I cannot do this for the rest of my life. And yet, I may have too.

And still, I hope.

No one warned me how hard it would be. No one warned me how deeply it would hurt to let go of the dreams I’ve been holding tightly with both hands for all these years.

The thing is, when it comes to a child of autism, dreams are fragile. They are like the colorful, luminous wings of a lovely butterfly. You have to handle them very carefully, and respect their delicate nature.

You have to let them breathe, and move, and change. Otherwise, they lose their color, and they turn to dust.

I was terrible at algebra in high school.

The water is rising.

I can't see the end.

And still, I hope.

IMG_E6493.jpg

Related video from Carrie Cariello:

This post comes from the TODAY Parenting Team community, where all members are welcome to post and discuss parenting solutions. Learn more and join us! Because we're all in this together.