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Autism: It is always here

I started to cry as she spoke.

You live it every day so you know. No matter what, autism is always here. It’s with us in the grocery store and on the bus. It’s with us in school and at the dinner table. And it never stops. It is a constant in our lives, for better and for worse. There are no breaks.”

Kristine Barnett is someone I have admired for years.

One of my all time favorite books for moms with and without kids on the spectrum is The Spark: A Mother’s Story of Nurturing, Genius, and Autism. I recommend it every chance I get, not only because how inspired I was by her story, but also because the book is written as honestly and as real as it gets. Her mother’s heart is on display for all in this book, and she does not hold back.

So when I had the chance to go and hear her speak last week, I jumped at it. My husband and I sat with all the other parents in the conference room, and listened to Kristine and her son speak about the last 16 years of their lives.

It was the same story I had read in the book (more than once), so very little of it surprised me.

But then, she looked into the audience and said, “We have come so far. It is so true and I am so grateful. And many of you know, because you live it every day too…“. Her voice broke as she started to cry.

You live it every day so you know. No matter what, autism is always here. It’s with us in the grocery store and on the bus. It’s with us in school and at the dinner table. And it never stops. It is a constant in our lives, for better and for worse. There are no breaks.”

My husband reached over and took my hand as I choked back a sob.

She’s right,” I whispered.”That’s what can make it feel so suffocating. It’s like I can’t catch my breath.

Autism is always here.

And there are some very, very good parts of that.

And there are some very, very difficult parts of that.

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My son has autism.

It makes him exactly who he is, and more importantly, who he is supposed to be.

It means he struggles, every single day, in a world that just doesn’t understand him, and isn’t equipped to help him.

It means he can take apart a computer and rebuild it, piece by piece, in less than two hours, without ever really being taught how.

It means he hits his own head, repeatedly on the wall, on his iPad, on the dashboard in the car, when things get overwhelming.

It means he still loves to snuggle with me, even at 12.

It means he can tell me about antimatter and what all the research studies have found,  even though he has never once seen the inside of a physics class or a physics textbook.

It means he loves his friends more joyfully and honestly than anyone I know.

It means he also deeply hurts their feelings without even trying, when he shuts the door in their faces and says he is done with them now.

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It means he knows more about reptiles, fish, cats, mushrooms, and Bigfoot than anyone really should.

It means he sleeps sometimes, but never really restfully and almost always with supplemental help.

It means he loves playing with his little brother one moment, and in the next might be dangerously trying to physically keep him from making any more noise.

It means I almost never take a shower without leaving the door unlocked and a little ajar, so I can still lean out, away from the water and listen.

It means academics are a breeze for him, and not something I have to worry about at all.

It means he has a sense of humor that is all his, wicked smart and so much fun.

It means a ton of good things.

It means a ton of hard things.

It means I will never stop fighting to give him what he needs to be successful.

It means he will have to fight too.

Autism.

It is always here.


 

Autism_ It is Always Here

 

*affiliate link for book included in post.

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