How I Cured the Autism “Problem” in Our House

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curing-autism

When my autistic son, Dominic, was four years old he ate nearly every piece of a foam puzzle while I was in the shower.  He seemed fine enough when I came out, looked at me with his round, cornflower eyes blinking.  He wasn’t the least bit distressed. But I was pretty flipping upset.

“Why did you do that?”  I asked him, with the fear in my voice palpable.

He looked unconcerned, but turned his little head up to me.

“What do you think you are, a goat?” I asked him, with the frustration in my voice palpable.
He looked at me still, no expression.

Here’s what he was probably thinking: Her face is much prettier from far away.

Here’s what he said: Nothing.

Then again, he did have autism and couldn’t speak.

I shook my head at him, firmly.  “NO!”  I said, pointing to the pieces of chewed up foam that remained.  “NO EAT!”

He shook his head in imitation. Then again and again.

He was still shaking his head when I wrapped him and his brother in their snowsuits and drove to the Children’s Emergency Room.

The doctors there determined the foam wasn’t going to cause him much harm, but they admitted him to the hospital for a day of observation.  Maybe they just felt sorry for me and thought I could use a break.  Pregnant mom shows up with two toddlers in her arms, one with severe autism who has a penchant for eating plastic. You throw her a freaking bone, right? I didn’t have the heart to mention I had a 6 year old daughter waiting to be picked up from school or perhaps wandering the streets of our neighborhood by that time. Sometimes people can only take so much.

While Dominic was in the hospital, I asked nicely for a psychiatric consultation.  Well, I kicked my feet and pounded my fists on the ground and threw a major temper tantrum, but then, after people began to stare, I decided to use my words.  The resident said that the Child Psychiatrist probably wouldn’t be willing to come.

Luckily, the resident was wrong.

Since Dominic was diagnosed at age 2, we had seen therapists at school and community mental health.  We had seen psychologists and social workers and speech professionals.  I was desperate and afraid I wasn’t doing enough, giving enough.  I spent some days huddled up in the corner of the kitchen, so paralyzed by the daunting task of “fixing” Dominic’s behaviors that I, too, was flapping and jumping and rocking. Other days I was developing complicated systems of therapy, aimed at resolving the finger waving, the moaning, the rituals that slowed him down and kept him from my vision of “living”.  But we had never seen a child psychiatrist and with the chances of another Gregory the Goat-like episode looming, I had so many questions.

The doctor was brisk without being bristly, matter of fact in the most consolatory ways. He said lots of things that day that left Dominic’s father and I with a mixture of understanding and fear.  It was the first time someone spoke harshly, honestly to us about our son’s condition, a condition that was just starting to infiltrate every corridor of the media and overwhelm our functioning.

“Your son has classic autism. ” the Child Psychiatrist said.  “There’s no cure.  Anyone who tells you they ‘cured’ their child of autism didn’t have a child with autism.  It’s that plain.”

And instead of sadness, I felt relief.

It seemed okay to me suddenly, to stop fighting the demon then.  I couldn’t see the demon after all, how could I tell how big and sharp his teeth were? I was sick of my invisible enemy. It was running my life.

It was going to be a battle that would only defeat us all in the end if I didn’t find a way out, I had known this but didn’t want to admit it.

And something worse had been nagging me for months, something I didn’t like saying then and I know makes people uncomfortable to hear me say now.  But the truth is, Dominic didn’t seem to really mind being autistic.  In fact, he kind of seemed sort of…really….happy.

So from that day forward, I stopped trying to cure my son of who he was.

This doesn’t mean I didn’t send him to occupational or speech therapy.  It doesn’t mean I didn’t find him the best school or tell him “No” when he would jump up and down in the middle of the family room, while the other kids were trying to watch The Goonies.  I still believed in therapy and supports. I still believed in giving him the best.

It just meant that I began to expect from him only as much as it was possible for him to give me. Frankly, I just tried to–still try to–help Dominic be the best Dominic he could be.

What it really meant most of all is that I stopped trying to banish the autism from Dominic’s life (or my life) and just started letting my son live with it.

It was a part of him, just like his blue eyes and love of eating all things foam.

And that’s the story of how, instead of shadowboxing the unseen enemy, I invited autism in for tea, but only if he agreed to be on his best behavior.

And it feels nicer this way, for me.  I understand it can’t work for everyone.  Maybe letting go of fighting the diagnosis, for some parents, would leave them with a powerlessness. Maybe some people would see this as giving up, as being weak.

I just see it as getting on with things.

And I don’t mind if other parents don’t think this is something they can do.  I just don’t want to have an argument over the whole thing. The autistic community is fractured over so much already.

Me, as a mom, accepting Dominic’s diagnosis isn’t a cause for debate.  There’s already too much cause for debate.  Aren’t we really are all the same?

We are, collectively, the moms of the flappers, the jumpers, the wanderers, the pickers, the groaners, the moaners, the kids that makes people stare and laugh and feel sorry for us.
Divisiveness over vaccines and diets and acceptance—those are just ways to get sidetracked, red herrings meant to divide us.  Let’s just agree to disagree sometimes.

And. Let’s not get distracted from the real issue, the one that we all seem to universally agree on–the one that unites even the fiercest enemies in our divided autistic community.

Let’s all agree to focus our energy, together, in a much more useful direction, one that every mother of an autistic child seems to embrace wholeheartedly——-

Hating Jenny McCarthy.

There.

Doesn’t that feel better?

Comments

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  1. 1

    Elise says

    Thanks for this great post. Also, I think it also applies, in some ways, to children without disabilities (some people are relentlessly freaking out on their kid’s personnality!)

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    • 2

      says

      Elise, this is so true! Sometimes it just makes sense to find a way to work within that child’s strengths and weaknesses rather than to try to change who they are—I hadn’t thought about it as it applied to all my children, but you are SO RIGHT. It does it apply to so much of parenting as a whole!

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    • 3

      Stephanie says

      This is exactly what I was thinking as I read the article. I’ve had to learn to accept things about my kids that I wish were different. When you stop worrying about “are they okay?” or “are they happy?” and just take your cues from them, it’s a calmer life. Good for you, Nicole! You figured it out early in your kids’ lives. My oldest is 22, and I’ve just sort of, kind of come to this realization.

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  2. 5

    says

    This was a great article. As the mother of four, with one child on the spectrum, I couldn’t agree more (except for the Jenny McCarthy part – I love her). Once I stopped try to cure my son, life became so much easier – and I finally had a happy child. To be clear, not trying to cure him in no way means that I’ve given up trying help him reach his full potential. But once the fight was over, he made amazing strides in all his therapies. I also think that a calm and loving environment does more for his well-being than any therapist ever could.

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  3. 6

    Carol says

    This hits home for me! My son is not dx’d with autism but it has been mentioned as we search for some neurological or inherited disorder on top of cp. This opened my eyes to what I already knew and as we are having a particularly rough morning it is a great reminder… He can not help the way he is and the things that drive me crazy, he does not doing on purpose to annoy me. I must remember this.

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    • 7

      says

      Carol, I have such empathy for what you must be going through—the searching and trying to piece it together when you know something is “wrong” and just don’t have a “name” for it—it’s a helpless place to be. I remember looking at my son when he would cry and scream and hit his own head simply because he didn’t like being outside or because we turned down the wrong street and thinking for a moment—why are you making things so difficult right now? And I would feel myself getting so frustrated with him. The more I reminded myself (and still remind myself) that he wasn’t being “bad” the more I could take the frustration away from him and put it on the situation itself. I still struggle with it but it helps me. I know how hard it is—the fact that you are trying to reframe it in the face of a difficult morning shows what an amazing mom you are. <3

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  4. 9

    says

    So well said, and a sentiment that applies to all of us as moms. Our kids are who they are… It’s up to us to help them be the best they can be, but not to try to make them into someone they’re not. Learning that every single day, and mine are teens.

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  5. 13

    SAT17 says

    Really loved this article, right up until the last 3 paragraphs. You mention earlier that a doctor helped you to accept your son for who he is, diagnosis and all, by clarifying that anyone who cured their child didn’t have a child with autism. I couldn’t agree more. But the fact remains that many children – I’d imagine a majority if the 1 in 68 now diagnosed – have experienced toxic neurological, immunological, or gastrointestinal insults which manifest in autism-like symptoms. Their parents – including Jenny McCarthy – are not wrong, crazy, or intentionally hurtful to the greater autism community by discussing the treatments that work for them. I realize this is a much larger issue, and also that you were trying to make a joke, but it seems to come at the expense of those families whose experience with “autism” is different, but no less, than your own.

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    • 14

      says

      You are completely right about this–my younger son had/has “spectrummy” symptoms (late to talk, isolated at times, needs structure) and so I parent from both sides of the issue and in so many ways, it is easier to parent my child with severe autism because there is something definite there—a “diagnosis” that gets us served. Its much more frustrating to know something is wrong and have people tell you that if you were more impaired or less able, they would help. :( “Different, no less” is a wonderful way to state it. <3

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  6. 17

    Lisa says

    Great attitude!! Great insight! My son has ADHD. It has its challenges but it is what makes him uniquely him. Some days I want to run from the house screaming due to his behaviors that make me insane. Then he will do something so sweet and loving I feel bad for being crazy. We are happier when we just accept, I think.

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  7. 18

    Mindy says

    The Jenny McCarthy line made me spray my drink all over my screen. I don’t have a child with autism, but as an SLP I have worked with many, many of them over the years. I think we can all take a lesson from this…kids come how they come, we can’t fundamentally change them, just push them to be their best. Thanks for the reminder!

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    • 19

      says

      Mindy—just want to say that the speech pathologists, OT’s and teachers that we have had over the last 10 years have taught me far more than they could ever teach Dominic—they have changed my life. Thanks for being willing to do the hard job and for giving families like mine something—even the smallest things–to celebrate. <3

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  8. 21

    Amy H says

    So well written. As a school psychologist and a mom of a daughter with special needs I feel that parents (myself included) put so much pressure on our kids to achieve. Let them be who they are and be happy :-) everyone’s idea of happiness is different and who are we to judge? That doesn’t mean we don’t give them what they need to reach their potential but we can stop pressuring them and ourselves to be someone who they are not.

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