I Found Myself Embracing Autism (Part 1)

I Found Myself Embracing Autism

The year is 2005.   Sage is precisely 2 years, 7 months old.  Although he won't be officially diagnosed for a few more months, I know he has autism.

I take him to Dunkin Donuts.  His eyes miss mine as he looks somewhere else. Something out the window catches his attention (I assume) as I order donuts. He doesn't notice the people; doesn't acknowledge anyone in the store. We sit down, he stares out the window and spins his body in the bench seat.  I look for a highchair to help contain my bolting-prone toddler, but there are none.

"What a difference" I reflect.  "When I brought Hope here early today, she waved at the cashier, pointed to what she wanted, interacted with people and interacted with me.  With Sage I feel like I am sitting here alone, but with a busy child beside me. Maybe he doesn't like it here."  I have a sudden urge to escape from the building.  Memories of working with people with disabilities start to flood my  mind.  "No.  It' can't be."

"Let's go, Sage."

I carry him out.

He screams.

I am confused. He didn't seem to be enjoying himself, didn't eat the donut, didn't interact with me, so why is he upset?

We go to the grocery store to grab a few things on the way home. I put Sage in the grocery cart and drive it over the bumpy pavement of the parking lot. Sage covers his ears.

"No!"

While we go down the freezer isle, he puts his fingers up in front of his face and wiggles them...stares at them wiggling back at him.  He never did that before (and he hasn't done that since this day).

And I knew: my boy-twin has autism.

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Crushed, I searched the internet.

What is the big deal about pointing anyway?  And who cares if he doesn't have eye contact...like, ever.  In some cultures that is normal--but not ours.

What's wrong with his sing-songy voice that has no words? He sounds like a Baby Einstein Puppet and I love that!

Yes he can't sit still. Yes, he likes to bounce a lot. Yes he likes to squeeze through tight places.  I love that.  I love that his version of a "hug" is to lay behind me on the couch. What is wrong with that?  Nothing!  Nothing is wrong with that, but it's listed here as a sign of Sensory Processing Disorder which is part of autism.

"Any loss of speech, babbling or social skills at any age"  I read. Oh.  Well, yes. He used to say "Thank you", and "Good Job" and one time he even made a clear sentence, "Good Job, I ate the whole thing!" at a restaurant.   He started to do many skills that never quite completely manifested.  What I now refer to as "Peek-a-boo skills".

The more red flags I learned about, the more it fit.

I try to sleep. I pray, "God, please do not let this be true!  Please, God!"

Silence.

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I felt like I was loosing a child. Every time I saw him or his twin sister, I was reminded that things weren't ever going to be the way I had imagined.

I didn't know if I'd ever hear him speak; ever hear the word, "Mommy".

I had always imagined him having friends, but now I have reason to fear that he won't be able to make them.

I never thought I'd fear my child would not be invited to birthday parties, I mean that is just a part of childhood, right? Not.

Dreams were broken, shattered. All in an instant, the future was uncertain and scary.

I knew I did not want to deal with case managers and meetings and plans and reports. Not again. I had been their on the other side of the table. I'd heard the parents concerns, complaints, attempts at advocating. I'd seen it done well and not well. I did want either part.

But there I found myself.

I called a friend and told her what we were going through.  She said three words to me, that shook me to the core:

"God is holy."

My thoughts ran: He doesn't make mistakes. He made him the way that he is for a reason. He knew Sage has autism, and He didn't do anything wrong in making him that way. He is holy.

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Sage was the most hyper-active child I've ever seen. He was fast and impulsive, and relentless. He could terrorize a room faster than any other child. Ever.

He also was adorable, funny and cute.  Irresistible.

But he was hard, very hard, especially when it came to naps.

At age two he suddenly didn't need them (not) and apparently he thought he didn't need to sleep at night either. We were up until 2 am often trying to get him to sleep but he wanted to run from one end of the room to the other, crashing into walls. We had to watch him all. the. time. Even leaving him long enough to use the restroom left him enough time to run out the door, or hop into the sink, or dump the contents of the refrigerator. Exhaustion does not come close to describing what we experienced.

So when the twins were four and Stevie was two, and we started to see the signs, the red flags...well, I was just not ok with that. Not at all. But it was happening anyway. Apparently God wasn't aware that this really was too much.

(TO BE CONTINUED!)

Click here for Part 2