Autism Awareness, Awards, and Progress

Today, on World Autism Awareness Day, I think about the progress that my little boy has made. While he does not have an official diagnosis of autism, he’s next to it – spectrumy – with speech and language challenges, sensory and OCD issues, and overall motor skills and motor planning delays. Honestly, just 12 months ago, I was 100% convinced that he is autistic. Today, though, while he continues to exhibit many of the same characteristics, he has made so much progress that I question.

I know that Tucker will have lifelong challenges. I know that speech and pronunciation will likely always be hard for him.

I also know that just three years ago, he wasn’t really talking and that today, he’s creating elaborate conversations between his Minions and his Lego Stormtroopers. That some of the conversation may be hard for anybody other than the two of us to understand is beside the point. The point is that three years ago, the word water was pronounced “ah.” Not to be confused with “hah” which was helicopter.

He’s come so so far. Sometimes, it breaks my heart to see his struggles. But then, I see his triumphs and his milestones and that while I miss tiny him, I am so proud of then him and now him.

The following is something that I wrote almost two years ago. At the time, when Tucker became frustrated or angry, he lost the few words that he had and went into a place inside of himself. He lashed out and was hard to reach. Today, this behavior is not completely gone, but it is mostly gone. You guys, the progress. It’s amazing.

(if you have a child who exhibits signs of autism, speech delay, OCD, or sensory processing problems, PLEASE contact Early Intervention, your school’s special ed program, a developmental pediatrician – please – it works, I promise)

I won the People’s Choice Award from BlogHer’s Voices of the Year contest (that’s me, kissing my sign above) for the following and thought it was appropriate to share it again today, on world autism awareness day and for the Finish the Sentence Friday prompt of “I once won an award for…”

***

I’m having so much fun! I’m on the playground and see magic connected climb-through boxes that are going to become a house and an airplane at the same time. They will make me invisible until I laugh. When I laugh is when I’m not invisible anymore, so that Mommy can find me.

Today, I brought my favorite toy ninees to the playground.  I’m flying them up up up. So high, so fast.

Vroooom.

I love ninees and that’s why I carried some all the way to the playground. Everything is lined up perfectly when my favorites are together – the playground, my ninees, my best friend, and my mommy.  Oh. I know they’re called airplanes now. But sometimes, when I’m excited, I still say ninees. Sometimes, something happens in my mouth when my brain talks to it, and when my mouth wants to talk to you, the words get broken on the way out.

But that’s not what makes me sometimes not myself.

I love the playground. I get an idea in my head on what exactly perfectly the-way-it’s-supposed-to-be fun looks like. Sometimes, the supposed to bes don’t happen.

On the playground is when I am doing magic, and flying, and it’s my turn next (I waited for my turn) but then, my friend took my airplane out of my hand and ran away with it.  I don’t want him to do that. I don’t want him to do that, because I was just getting ready to do a fly circle-stunt in the air, and now my friend has my plane, and he’s running, and I have to get it.

Mad. But not that mad.

Then, he does it again, and I already said “NO” and “stopit,” which is what my teacher and my mom say when I’m supposed to Be Gentle and Be Nice and Keep My Hands To Self. I did. I kept my hands to myself and I said “Sorry, Friend” after I almost was going to hit him. I didn’t hit him. I stopped it.

My friend has a different game in his head than the game that I have in my head. My game, in my head, is better and why can’t he see that my game is more fun and that he’s ruining everything? He just took my airplane again. And he’s running with it.

I can feel in my body that I’m mad and that I need to keep HANDS to self but I’m mad and running and why can’t my friend see that my game is more fun?

It’s. Not. Chase. Time. It’snotchasetimeandI’mgettingMADandMADDER.

My friend is not taking turns and it’s pissing me off that another kid is making tooloud baby crying sounds and can’t he just stop it and when I used my words to say STOP IT like they taught me to, he didn’t stop it.  It’s all tooloud too loud and why won’t he stop it? I want him to STOP IT STOP IT STOP IT. Nobody is making him stop it and I still want to play my game. I can feel in my body that I want to make them stop it and I can feel in my head.  There is noise that is happening in my head and that noise makes my broken words even more broken.

I don’t like the feeling in my body and I don’t like the feeling in my head but I don’t know how to stop it. It sounds like

CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH

It becomes white and red and black in my brain and that static noise in my ears…

…and I can’t hear and I can’t think and I just want to play with my ninees the way I WANT TO PLAY with them and this is terrible and I just want to go home and you suck. And this is in my head and my ears and my eyes and my mouth is broken and I can’t say stopit any more and I can’t say anything and all I know is

CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH

That’s all I know and…

“HANDS!”

CHSHH(hands?)HKKCHURHKURCCHHHH

…and…

CHShh(Tucker!)HKKchurhkurccHHhh

And then I am sad because I was maybe-bad and I didn’t keep my handstoself…and I’m crying…and I hear

CHShHHH(deepbreaths)hkKCHURHkurcchhhh…hhh…hhh…

Yes. (deep breaths)

I didn’t mean to hit my friend. Can we still play?  I’m sorry. Here. I’ll stroke your head to show you I’m sorry. Can we still play? But don’t take my ninee. That’s bad.

I still want to play and I want Mommy to know that I want to listen, even when I can’t because of CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH.

Sometimes, I can make it go away myself. If I tighten my mouth and my shoulders and my face and my eyes and my hair, sometimes it goes away. But sometimes, it comes even when I don’t want it to and my broken mouth is brokener. That’s when Mommy has to tell me “HANDS!!!”

Then, I am calm. After the crying, and the knowing, I am. Calm.

But Mommy sometimes isn’t.  Because Other Mommies look at My Mommy like she is bad and she is not bad, she is just breaking through the CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH.

Sometimes, then Mommy gets sad and I tell her I want to go home because I want to go home and I just want to go home because I am done.

I’m learning. I’m learning to ask for A Break. And to Take Deep Breaths. And that Hitting Friends is Notnice.

And that’s when, me, Tu-uck is sometimes mostly not myself. But not on purpose, and not because.

***

When are you not yourself?  Do you sometimes need a break, hiding under a chair to get your hair back to not feeling like static CHSHHHHHHKKCHURHHHHHHHHHHHKURCCHHHH? I do, and I’m in my 40’s.

This has been a Finish the Sentence Friday post, where writers and bloggers gather to share their own takes on a particular sentence. This week’s was “I once won an award for…”
Interested in joining? Come to our Facebook Group!
This week’s hosts:
Me (Kristi from Finding Ninee)
and your cohosts:
Allie Smith of The Latchkey Mom (and this week’s sentence thinker upper) and Allison Carter of Go Dansker Mom.
Also, look – it’s like I’m in an Allie sandwich! How cool is that?? Wait. Is that weird.