Autism Awareness Month and.....Tetris

Miranda Steffen

April is autism awareness month. Im going to be real honest here, and tell you I think this is silly. At this point, everyone is pretty aware of autism. A handful of shows feature characters with autism, it’s in the news, and most everyone I know knows someone with autism. Well, i guess 100% of people *I* know knows someone with autism, but I digress…

Maybe Im being a total curmudgeon about it because we are going through a rough patch. The patches of autism that you dont see on TV and that arent happy and embraced and plastered on awareness posters. We (yes, WE, all of us as a family) are feeling the poopy parts of Aidens stress and anxiety that comes with the diagnosis. We hear it on a daily basis in screams, whining, wails, growls, and sobs. we see it in his tired eyes even when he’s had a full nights sleep, in the scratches and bite marks on his arms that come with anxiety/panic attacks, in the stress of our own faces because my GOD it can be stressful as big bad F word. We watch him go from happy and involved to foggy and sad at the blink of an eye. You can almost see his brain fall off track in that moment of discombobulation.

OH! I have a great example! Ok – tetris. The worlds greatest game on earth. You know when youre playing on level 5 and coasting through it like NBD? youre enjoying the music and talking to the people beside you like, “pfft, yeah i have no plans on saturday, why? whats going on?” You know, youre playing, but not REALLY concentrating. Slowly, you level up and it becomes increasingly faster. Suddenly, you realize youre pretty stacked. You hear the music increase and that adds to the pressure. I, personally even holler at whoever is near by to turn the volume down. I try filtering out what’s meant to overload you as a player. you start making gaps in the lines. You stop talking, tell everyone to shut up, break into a sweat (or maybe thats just me?), and you really try to concentrate on what the hell is going on in front of you. Then it happens: you cant place a block because it’s going so fast so you just watch it collapse in front of you, yell at the tv, and throw the controller (again, me? im an intense tetris player). Game over.

THAT. THAT is the autism we are in the midst of many days as of late. We are not on level 5 – the kind Joe Citizen is aware of. We are on level 15 – the kind you know only if you live with autism or are so damn close to it that you deserve a hug because you voluntarily put yourself there.

So maybe autism awareness month isnt silly, but be aware that there is a LOT of behind the scenes action you may not know about. You do not know autism if you watched Parenthood (but my god, great show, right?). It’s a spectrum disorder. That spectrum can swing on a daily basis, and sometimes we have to take it like an addict: daily, hourly, minute by minute. Be aware of THAT when you see a kiddo (or adult) struggling. Take a deep breath with the rest of us and know that they are trying and having a hell of lot harder time than you are as the bystander witnessing the unravel.

I am the best tetris player i know. this is the cocky, gods-honest truth. Even when I yell, “im done!” and stomp off, I pick up the controller and try to go farther. Such is life with my beautiful, amazing, kid. ive got this. WE’VE got this. – See you on the other side of 15.

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9th World Rett Syndrome Congress
Surfers Paradise, QLD - Australia
Sep-30-2020 - 09:00 am
The Rett Syndrome Association of Australia (RSAA)email rettaust@bigpond.comwishes to draw attention to the fact that it is staging the 9th World Rett Syndrome Congress i ..
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