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When I Realized My Son’s Autism Didn’t Need to Change — I Did

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I’m not a fan of change. I like my comfort zone and keeping things “as is” because I feel comfortable with “as is.” I know what to expect from “as is.” So, when change comes along and rears its ugly head, “as is” goes out the blankety-blank window.

Yeah, change sucks. Sometimes. Not always.

No time is change more expected, more discussed and more debated than at the start of a new year, so I always jump on the change bandwagon…for about a week. When the calendar marks the end of one year and the beginning of the next, change is expected. Change is encouraged. We are all supposed to change for the better, thus having a better year than last. So, come January 1, I decide to change, too.

I’m going to change by eating healthier, exercising more, swapping screen time for snooze time, swear less, reduce my incessant need to please people and decrease my wine intake. Change, change, change. It’s no wonder I’m not a fan — change and I, well, we don’t jive, so I typically fail miserably.

I continue to eat Cap’n Crunch cereal for breakfast, binge-watch “Homeland” until the wee hours of the morning, skip the gym (sometimes I just totally forget I thought about going), swear like a truck driver, people-please to the point where I don’t remember what pleases me and beg my husband to stop at Total Wine while traveling. Promise. Fail. Repeat.


Merriam-Webster dictionary defines changes as “to become different; to become something else.” What if this new year I decide to not become different or something else? What if I decide to keep on eating Cap’n Crunch cereal for breakfast, forget to go to the gym (time and time again) and keep on talking like a truck driver? What if staying the same isn’t so bad (with the exception of all that sugar in Cap’n Crunch cereal)? What if I’m resistant to change? What if change is scary or bad? What if something becomes different and I want it to go back to being the same? Can I change it back?

Yeah, change sucks. Sometimes. Not always.

As it turns out, no matter how much Cap’n Crunch I eat, change comes whether I like it or not. Change often comes when we don’t want it to. When we aren’t expecting it. When we want nothing more than to continue with status quo, when “as is” seems good enough. It seems no matter how hard I try to hang on to “what used to be,” it quickly becomes “what was.” Especially when it comes to my kids. As I watch them growing up, moving forward and “changing,” I dig my heals in, tie a harness around the biggest tree I can find and hold on to “same” as long as I can. Guess what? The tree falls over, the harness snaps and I fall flat on my face, landing in a big pile of change. Yeah, I know, “it’s what’s supposed to happen,” but it doesn’t mean I have to like it.

Change sucks. Sometimes. Not always.

There was a time when I longed for change. A time I begged for change. A time I prayed for change. A time when I feared the status quo and “as is” had me freaked out. I desperately wanted things to change, things to become different, even though “different” was precisley the driving force causing me to wait for change to come. And I didn’t want to wait for a new year for change to arrive.

I wanted my son Ryan’s language to change from scripting to communicating. I wanted his overloaded sensory system to change so his day-to-day life was easier for him (and yes, selfishly, for the rest of our family). I wanted his lack of desire to connect and make friends to change. I wanted my son’s insistance on routine and his fear of change to change. I wanted his diagnosis of autism to change, for him to not have a diagnosis at all which would make all those other changes I wished for no longer necessary.

But with all this change I bartered and begged for, what really needed to become “different” or to “become something else” was me.

I needed to change… my understanding, my fear, my ignorance and my awareness. My son didn’t need to change, I did. When he was scripting, he was communicating — I just needed to change how I heard him. When his sensory system was overloaded and he was in the throws of a meltdown, I had to change how I viewed the world so I could see his view in order to help him. I had to change my thinking of what a friend was and what a friend needed to be. I had to change my fear of disrupting his routine and find ways to help him cope when the routine had to change. I had to take my worry, fear and lack of understanding of autism and change how I viewed this diagnosis and realize that autism did not make my son “become something else.” He was and has always been Ryan. I just needed to change how I saw him.

And I did. This time, change did not suck. This time, change was good. This time the status quo needed to be disrupted. “As is” was no longer cutting it, and it was hurting my son. This time, I had to “become different” and “become something else.” This time, change didn’t hurt me. This time, change saved me.

It was my insistence on things being the same — the same as they were for my oldest son, the same as they were for kids in my son’s daycare class, the same as they were for my friends’ children — that caused me to want change for him. And at the time, I believed this change was best… for him. Yes, in some ways those changes may have helped Ryan communicate better and get through the ins and outs of his day better, but he didn’t need to change — I did.

Change sucks. Sometimes. Not always. But when your heart is in it, really, really in it, you can change. You can “become different,” and that difference may change your world and the world of someone you so desperately love.

Wine and Cap’n Crunch will not change though. Guilt be damned.

mom and son at dinner table
Kathy and Ryan

Follow this journey on The AWEnesty of Autism.

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Originally published: January 14, 2016
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