It’s just a magnetic picture frame, a memento from summer camp. The brightly colored foam sun and flip-flop stickers that encircle the smiling child in the photo are barely noticeable…but only if you know the boy.
His golden locks are not so curly or so golden anymore. You can tell that he’d been outside playing in the oppressive June heat; the strands of hair, stuck to the sides of his face with sweat are a dead giveaway. Souvenir fruit punch stains on his shirt commemorate a lunch well eaten.
I know many a mother that would not display this picture so proudly, but I’m not them. Not anywhere close. The photo, and everything that comes along with it are a milestone worthy of a tickertape parade, it signifies his return.
It’s one of the only pictures I have of him from the last few years…where he’s looking at the camera.
Had I been paying more attention, I might have been able to see what was going on. Looking back, it started at around the age of three. He’s always been advanced…even when it came to developing Asperger’s Syndrome.
I can still hear his tiny voice calling out the name of every car on the road from the backseat of my Honda. “Wook, Mombo! It’s a Cadilwac Escawade!!!” His excitement was contagious. I didn’t realize his obsession was a sign.
At four, when I pushed him forcefully into the preschool shark tank… I was not the least concerned when I was called in to discuss his educational growth. I didn’t send him there to secure a slot in Harvard. I sent him there to eat paste and meet other kids.
He was always surrounded by adults, and as much as I enjoyed communicating with my little professor…I knew how important a peer group was. When he came home and told me that his teacher was stupid, I believed him…because she was.
My kid was smart. They were trying to tell me he wasn’t. There aren’t many children, at the tender age of four that have successfully figured out a way to prank their parents. “STOP THE CAR! We’re gonna get hit! Wook OUT!” As I’d slam on my brakes he’d giggle, very satisfied with himself, knowing that his mother would not punish random acts of hilarity.
Five was marked by his father’s skull surgery and his mother ending a very unhealthy relationship.
Six was filled with cancer (x 3).
I wasn’t sure if the circumstances that life was throwing at him had changed him…or it was something else. I was terrified to know the answers, but I couldn’t just sit back and allow him to disappear. He’d stopped making eye contact. He spoke, but he grunted a lot. He began to lose skills he’d mastered. He’d get lost in his video games. His spark had faded.
There were no happy moments. Getting him to do anything took an Act of Congress, and his mother standing over him screaming until her eyes bulged.
He refused to leave the house. Failed interactions with neighborhood kids usually left him crumpled in a corner like a pile of dirty clothes. All he would talk about was Minecraft.
I tried to get him help his Kindergarten year. I went to the school. I took him to the Pediatrician. I did the meetings. I asked politely. I was ignored. It was suggested he was going through a phase…and he’d get better.
He did not getter better. There was no snapping him out of it.
If it were not for the help of a wonderful Occupational Therapist and First Grade Teacher, we’d still have no idea what was going on. They helped me understand. They helped me see his deficiencies, which are many. They told me what “Sensory Issues” are…and why my son screams bloody murder every time I bathe him, brush his hair, or bring out the toothbrush. They assured me that I didn’t cause this by eating that tuna sub or having that cup of coffee when I was pregnant.
When I was a kid, we called these things “Get in the goddamned shower and/or stand still so I can brush your goddamned hair”.
His psychological reports were confusing. There were a lot of letters… ASD, ADHD, LMNOP…whatever. This only added to my anger and frustration, why couldn’t anyone tell me what this was in plain English?
In retrospect, this anger fuel was a good thing. It sent me into the school with a hired gun called a “children’s advocate” …she didn’t do anything either…until I threatened to fire her and possibly ruin her professionally. I don’t know, when I get mad I don’t remember exactly what comes out of my mouth and what stays in my head. Ok, that’s not true. I totally remember what I said, but that’s another blog for another day. I’d had enough of the run around.
Now that we know, it doesn’t get any easier. The Autism Spectrum is a very confusing glow to bask in. It’s not a disease with very specific symptoms. There is no magic elixir that cures it. When your child is diagnosed as “Spectrumy” you find yourself in the company of highly educated people who basically tell you, “Shit. I don’t know…let’s try this,” and then they charge you $400.00. These doctors don’t accept insurance…I’m guessing because so much of this is trial and error…and they get tired of having to fight with insurance companies to get paid. M.D.’s gotta eat too.
We’ve pulled him out of public school and put him in an environment that is more soothing. He has two teachers and a dedicated aide. He’s made amazing changes. He has friends. He’s speaking in full sentences again. He’s looking at me. He’s reading. Even with all these changes he still can’t focus. When the doctors, therapists, and teachers all gently nudged us towards medication…again…we had no choice but to agree. I know what it’s like not to be able to focus. It’s torture. Life is hard enough without having to fight with your brain.
This morning, as I had to pin my baby down on the couch and force medicine in his mouth, while he screamed, “Why are you doing this to me?” all I could do was hope they know what they’re talking about.