Looking through a Fishbowl

autism1

Yes. I thought it would go off perfectly and without fail.

Well, in my mind it always works that way. My kids sit quietly or at least “kid acceptable” quietly. I’m able to watch my oldest, “Steve” excel in something he loves and I clap, take pictures and get to bask in this moment of glory  just like the other parents.  Very unlikely. Only in my dreams. Tonight Autism reared its most beautiful and most undesirable face at the same moment in time.

What I didn’t mention in the last post was that we have three kids. “Steve” 8, who has Autism, “Grace” 6, who has the “why-don’t-I-have-Autism” syndrome (yes, this exists, trust me:) and “Emerson” 4, who has Autism.

Of course “Steve” did beautifully, he did his most perfect jumping side kicks, defense moves and punches. He was happy, smiling and so very proud of himself, which is a rare, very rare moment in time. When they awarded him his yellow belt, he pumped his fist and pointed to his yellow belt while looking at me, while I was standing outside, and smiled, one of the biggest smiles that will be captured in my head forever. Guaranteed.

But yes, you read it right, I was outside.

While “Grace” was able to sit and watch her brother, quietly, giving “Steve” and the dojo the respect it deserves, “Emerson” was not having it.

And not like just any 4 year old not having it, but an Autistic 4 year old not having it, to the point where the kids earning their belts become less of the center of attention and “Emerson” becomes the center of attention. Not the good center of attention, but that where parents look and stare with those “why can’t you control your child stares”.

“Emerson” was screaming about money. He had found two quarters in my car on the way to karate and that was all he could think about. He bought them in the dojo, which I didn’t know. He began throwing them and when I took them he cried and shouted “Where’s my money?” over and over. “I want my money!” “Who took my money?” “Can you find my money?”

I tried to distract him with my phone and earphones, bad idea for a kid that has a hearing sensory issue. I put the earphones in his ears, they wouldn’t stay in, it was too loud and it was too quiet all at the same time.

And all at the same time I was nearing one of those breakdowns. You know the ones, the ones where you start sweating. I was trying to calm “Emerson” and watch “Steve”. But I ended up having to take “Emerson” outside, and not from choice. Outside, he began running around, throwing rocks-at me, yelling, screaming, banging on the glass. And asking for his money back.

And I stood there and looked in the glass at “Steve” and shared in his moment of glory but felt like a fish in a fish bowl, outside with “Emerson”, my blood pressure was rising. My inability to control the situation was frustrating. I wasn’t able to watch one son succeed and wasn’t able to help my other son in his most uncontrollable moments.

Whatever it was in the room that set him off, set him off. He goes to karate in the same place twice  a week. We have been there and sat and watched “Steve” and “Grace” during their classes. So who knows what it was. Maybe it was the crowd of people, the room was more crowded than usual due to testing week or maybe it was the quite, it was also more quiet, maybe with the anticipation of the testing, due to testing week. Whatever it was, he sensed it and couldn’t deal.

“Emerson” was having a tough time.

So was I.

Unfortunately, our tough times are chaotic and crazy and sense does not exist. Rationality does not exist. In the moment, I was rollercoasting (I made that word up), back and forth from  a high and such a low of emotion. And now, while I type this, “Steve” and “Grace” are quietly playing Minecraft online with their cousin, my husband is sitting here at the table, joining us after a long day of work and John is playing quietly on the floor with his dinosaurs. And in our home, we go back to normal, our normal.

And I’m exhausted.

And we will go to bed, wake up and another day happens tomorrow, of pretty much the same, but the question is, who will be up and who will be down.

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“Steve”

Today my 8 year old gets his yellow belt in karate! Anyone that knows him knows this is a big deal. To find something he likes, away from the computer and to watch him excel makes me want to jump up and down and cry at the same time.

I won’t use his real name, for the sake of blogosphere I will call him “Steve” after Minecraft “Steve”, (I’m sure he would appreciate this). “Steve” was diagnosed with Autism, ADHD and Dyspraxia this past September. We always new he was great and different, but we just figured he was unique. But when the meltdowns became larger than life, or so he thought, and he started having trouble fitting in a school and his anxieties plagued him more that any parent ever wishes they would, especially for an 8 year old boy, we knew it was time to have him evaluated, for something. When we learned we were not surprised but at the same time, who wants to label their son. Who wants to take them to have them probed and questioned and made feel like something was wrong. I tried to keep it from him. “Oh every kid goes to a developmental pediatrician at one time or another” or “Oh most kids see a therapist” but when we started to have honest discussions on how he felt different. I knew it was better to tell him than to make him feel like something was wrong. After all, having a two way discussion about anything with “Steve” was hard enough, if it weren’t about this obsessions, if he was opening up to me it was time I was honest with him.

So one day during our discussion I sat him down and explained about Asperger’s and what it meant and how that applies to him.
And he sat and he thought and then he said, “What did you call it again?”
“Asperger’s”, I said.
“What?” he shouted with a smile. “You said Ass!”
“What?” I said.
“You said Ass! Mommy said Ass!” and then he got up and walked away and that was that.

And that was that.

The end.

No revelations. No questions. No ah-huh moments. Well at least not for him.

Autism doesn’t define our son. Autism does not define our sons… (another post:))

“Steve” is funny and talkative. He takes things very literally. For instance my parents live in North Wales, a town in Pa and he always wonders why it is called North Wales, when there are no Whales?! He came out of a test one day, part of his evaluation testing and I said, “You must have worked hard! I’m sure your brain is fried”. He shouted, “What? I can’t fry my brain! How would I get it outside of my body!”

True. This is very true.

“Steve” may not always look people in the face when they are talking or even not recognize them, but he remembers and notices everything. He has these amazing “passions” about certain topics to the point he becomes a total expert. Once it was the Titanic. He know everything about the Titanic there was to know, he even created models of the titanic resembling the ship before and after it crashed. And now it’s Transformers. “Steve” has meltdowns and believes everything I say and takes all my jokes to heart. He has trouble following social rules, talks loud when anxious and hates transitions. He also remembers everything about everything, especially the small details. He can recall everything I have said, even those promises you want to forget.

Every morning when I get up, I remember, “Steve” only eats pancakes for breakfast. I remember to prepare him for the day, in order to eliminate surprises.
I also remember to kiss him, tickle him and give him big hugs, even though he may squirm underneath. And I tell him my bad jokes and try to get inside his head, which is like an armored truck.
“Steve” is my wonderful, smart,beautiful son, who happens to have Autism.

Just like our other son. We’ve been blessed not once, but twice…..