Even Now, It’s Not Going Away

Last week, my son Noah slightly hit himself in the face, and his head out of frustration. And do you like how I say slightly? I have to down play it, because that has never happened before…and I can’t believe it nor can I stop thinking about it. Because my kid’s not supposed to do that. He’s supposed to be high functioning?

Not that the label really matters. But I’m expecting the words to come, and the communication to start flowing, and even his interests to change.

But what if it doesn’t? What if the frustrations and behaviors just get stronger? This is what I am utterly terrified of. I feel like the next year or so we are in limbo, just waiting to see which way Noah will go. Things are already tough, and a lot of things are still an issue for him. It’s better, but still, will it just continue to be this hard?

I was having a conversation with one of Noah’s therapist, she mentioned all her kids were verbal, well except for Noah and one other boy who is nine.. Nine. Wow. That shook me a little. And I think it was obvious, because she was quick to follow with, ‘but Noah’s one of my youngest kids!’ That was nice. And I know she means well…but I’m sure that nine year old’s mom thought the same thing. She was where I am right now…and her son is still not talking.

I decided to re-read Noah’s diagnosis paperwork, probably a bad idea but it was almost a sign telling me to look it over. Under diagnosis the words, ‘autism spectrum disorder level 2’ .. I felt that feeling where your whole body gets warm and tingly, and your heart starts to race…slightly panicking because wait? I thought he was high-functioning?

I’m going to be honest, because that’s what this is all about; I started balling. And it doesn’t matter what level he is, it really doesn’t, Noah is Noah. But to actually see that in writing hurt a little. It also gave me a little reality check that maybe I’ve been needing.

Because I don’t really picture Noah past the age 5 or so. Isn’t that odd? But honestly it’s because I can’t. I can’t see my school aged boy being autistic…and I know it’s because I haven’t truly accepted this past his toddlers years. I guess I haven’t quite gotten there yet, but I’m working on it though.

Just the other day, Adam said to me in conversation “if Noah had to live with us forever..” and that kind of shocked me. Not in an angry way at all. I am very fortunate to have a supportive partner, with whom we’ve always seen eye to eye on Noah. It was just the first time that had ever been said out loud.

You see, I keep hoping something will be the ‘fix.’ But we’re doing all the ‘somethings’ we can. The early interventions, preschool, the ABA therapy, the diets and supplements. And we’re still here. We’re still on the spectrum. I honestly believed that when Noah started school, he would start talking. Maybe not a ton, but I whole heartedly believed we’d have a couple words. It’s March.. the school year is almost over, and we still have a non verbal three year old. Who is still autistic. And it’s still obvious.

I also expected that he would do all the things like his typical peers. Maybe it would just be later on down on the road. Now, I’m not so sure anymore. And I wonder, if he were to do things like his typical peers, would he actually want to? Or will he feel he has too? And no matter what, autism will always be there, in the background, shining through.

And I should know this by now, because when you drop your kiddo off to his developmental preschool, and he is still one of the two or three who doesn’t run and give the teacher a hug. And still doesn’t notice the other kids. And still doesn’t participate like most of them do. Or when you are now researching things like Apraxia and pans/pandas, when these things are still happening, than this is it. This is for life.

You won’t hear me say this often, because I believe this way of thinking does no good, but this isn’t fair. None of it. I’m angry, frustrated, and sad. And just so tired of it all. So much so that I can’t think anymore. And I don’t. I turn my brain off and just stare at Noah, and wonder, why us?

Now as I look at my sweet little boy sitting next to me, all I want is to be a better mom. Because I haven’t. I have spent too much time studying him, and looking into every little thing he does trying to analyze it. I have spent too much time wishing for things to get better. Waiting to get to the good part, but I’m realizing we’re already here. And this is what it is.

Gosh have I been hanging on to that high functioning though, because it’s so close to typical right? But it’s not. It’s all just, autism.

And this is not me giving up hope, not by any means. Noah is only three! And I’ve been told numerous times that we started therapies and biomed very early, so that’s promising. This is me just acknowledging that it is a possibility that Noah may not do all the things I still hope are coming…like play sports, or go to college.. live on his own, or verbally communicate.

Because up until recently, I haven’t even considered that a possibility for Noah, but it is. And that’s okay. We’ll be alright. Just like every family who has done this before us. I see them still smiling, and advocating, and most importantly, happy.

And I know we will be too.

Written by, Danielle Mager

Danielle is the proud mama to Noah, a handsome, silly, strong willed, almost three year old who also happens to be on the spectrum. Danielle blogs at story of noahism and shares their journey on Facebook at https://www.facebook.com/storyofnoahism/.

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