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Here’s what no one says out loud about raising a 13-year-old son with autism

My son Jack is 13 years old and has autism.

His brain is wired in a different way.

Because of this, he or she doesn’t read social cues, fully understand 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 startle him. He has to check where I am in the house, oh, a million times an hour.

He’s kind of got what’s called a sensory processing disorder. He needs to touch all of his food with his fingers to make sure he likes the feel before putting it in his mouth. He always tries to regulate his body through self-stimulation. He rubs his hands together quickly, as if warming himself by a campfire. He hops all the time.

I’ve been thinking about this boy and his future, his anxiety and his obsessive habits for 13 years. Not a single day has gone by that my stomach does not feel tight because of it.

The thing is, lately it’s been feeling a bit stuck. He’s not much better.

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

Things like swearing. Do not touch all the food on your plate. Do not touch all the food on my plate. Limits. Flexibility with the radio station in the car. Flexibility with what we watch on TV. Flexibility in general.

Raising a child with autism is a bit like taking a boat ride in the wide, open water. One minute, everything is fine – the radio is playing softly, no one is shouting profanity and all of a sudden you stop abruptly, as if the anchor has fallen.

At this moment, in our little boat, we are motionless. We haven’t taken an inch against the tide for quite a while. And that stillness might just be the hardest thing for me.

Is it harder than all the nights my husband, Joe, and I stayed awake, passing our toddler between us and trying to avoid each other’s gaze?

Or search for a bunch of different drugs to help ease our son’s overwhelming anxiety?

Or having to tell him on a hot summer afternoon that he was going to a different school because he couldn’t meet the academic standards of public school?

Raising a child with autism is a bit like taking a boat ride in the wide, open water. One minute, everything is fine – the radio is playing softly, no one is shouting blasphemy – and all of a sudden you stop abruptly, as if the anchor has dropped.

I’m sick of thinking about it. I’m sick of autism.

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

I’m tired of worrying if the drugs he takes before bed every night could have terrible side effects or cause him to develop a third eye.

I’m sick of telling her to use her witticisms and ask her not to yell and try to figure out how to get her to stop organizing the DVDs all afternoon.

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

But some days I wish I knew where it was all going.

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

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

And after hope, here we are. We rock in our boat, under the furious glow of an orange sun. No progress. No change. No forward movement.

In the meantime, I spend my day.

I listen to “Hamilton” on the conveyor belt. i whisper namaste at the end of the yoga class. I cook my repertoire of staples: pork chops and meatloaf and, if it’s hot enough, chicken or steak on the grill.

But inside, I stifle a small storm. I’m going through my list of worries about the autism toll – you know the autism toll, right? It’s a continuous tally of goals, progress, setbacks, research, and doctor’s appointments that people like me who are raising children with autism keep in mind.

I go through the list and decide which one I want to focus on for the day, if not the week. Lately it’s been a high school diploma, especially the fact that I’m not sure Jack will get one. All the while, my husband and I were determined to help him graduate from high school. No, that’s not true – we were determined to Make he graduated from high school. That was our ultimate goal, except it doesn’t look so good right now.

Don’t get me wrong for a hot second. Jack is not stupid. He is not a mannequin. And yet, he’ll probably never understand algebra, never write an essay longer than two paragraphs, or finish a senior project.

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

No one had warned me how difficult it would be. No one had warned me how much it would hurt me to let go of the dreams that I had held tightly in both hands all these years.

I actually imagined graduating from high school. Can you believe it? In fact, I thought to myself if we could just get him to graduate and take that step, then everything would be better. He will be better, and it will be a little behind us.

The truth is, it will never be behind us.

I mean, as parents we all have to let go of some dreams. Maybe you dreamed that your son would be an architect like you, but the first time you saw him build a tower out of Legos, you knew it was far away. Or maybe you dreamed that your little girl could grow up and become a doctor, but she is terrified at the sight of blood, so you had to readjust your vision for the future.

But how many of us can say that we have given up on the dream of our child graduating from high school?

No one had warned me how difficult it would be. No one had warned me how much it would hurt me to let go of the dreams that I had held tightly in both hands all these years.

Dreams are fragile, especially when it comes to autism. They are like the colorful and bright wings of a pretty butterfly. You must handle them very carefully and respect their delicate nature. Otherwise, they lose their color and turn to dust.

I was also bad at algebra.

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