Hey all– it’s that time of year again for RJ Scott’s wonderful and inspiring Autism Awareness Blog Hop. You can find the masterpost–with the list of the great authors who’ve contributed RIGHT HERE. It’s definitely worth a read folks–do check it out.
Now, many of you know that while none of my children are on the autism spectrum, three of them do suffer through a range of neuro-atypical difficulties. The most difficult one of these to explain has been our oldest son, who is Communicatively Handicapped.
It doesn’t sound like a real thing–I know. I mean, I know a number of men who freely admit to being communicatively handicapped on any given day. But the disability itself affects everything–from behavior to muscle tone to academics to socialization. My son is 24 now, and we’ve worked hard to make him self-sufficient. He took six to nine units a semester and got his AA degree after five years of hard work. He’s going for his BA, and that’s impressive–especially considering initial assessments thought he’d be lucky if he ever learned to read. But he will never drive. He has only now become mature enough to think about dating. Working more than thirty hours a week will completely overwhelm him. Unexpected questions or social situations fluster him to the point of tears.
Cognitive disabilities are rated mild, moderate, or severe–and Big T was in the moderate range, which meant this disability would be something he would have to overcome in every aspect of his life as he matured to adulthood. His accomplishments are no small thing.
When he was a baby, getting him diagnosed so we could get help was a nightmare.
To start with, his pediatrician was not competent–and his father and I were new and uncertain parents.
“But doctor–he cries all the time.”
“Yeah, they do that.”
“Well, yeah–but I lost my job because we couldn’t keep a babysitter.”
“Well, you should be home with him anyway.” And for those of you who are like, “How could you let him speak to you like that?” I should mention–my mother-in-law felt the same way. In fact, she actively blamed me for the fact that he cried all the time, because I had gone back to work so we could afford the incompetent frickin’ doctor. My own parents actively and vocally blamed me because I didn’t work full time and they felt I “hovered”. I could not fuckin’ win.
But back to diagnosis.
“But doctor–he’s six months old and he can’t hold a bottle.”
“They get lazy.”
“But he can’t sit up, either–and that’s a milestone, it’s in all the books.”
The doctor sat him up and he sagged like a half-full bag of rice. “Naw–he’ll get there soon. He’s fine.”
“But he’s not talking.”
“Well talk to him.” (Seriously–you all have met me, right?)
“But he’s not mobile and he’s eleven months old.”
“Look at that–he’s walking.”
“But he won’t raise his hands to grab furniture. He’s blocking with his chest!”
And so on.
Finally, when he turned two, he had a grand total of three words. That was it. Three. “Yes,” “No,” and “Ba”. I’d had his younger sister by this time, and we were starting to realize that no–none of the behaviors he’d shown as an infant were normal. The lack of ability to transition, the lack of receptive language skills, the low muscle tone, the zero expressive language–something was getting in the way of his progress. Hell–even his size. He was extraordinarily tall, but he ate too much–and that sounds like bad parenting, something I’ll freely own–but when he was two, his father and I sat at the table half-asleep and realized hey–this kid had eaten half a pizza and wasn’t slowing down. When he was tired, the same thing that hindered his muscle tone and coordination also failed to tell him he was full. When he was four months old he could drink 24 oz of pumped breast milk in a sitting. (And brother, that was not comfortable–I’m saying.)
But explaining this–and getting it explained back to us–was difficult and frustrating to say the least.
The medical profession had sort of completely failed us–and have yet to regain our faith, honestly.
So the education system came into play, and we applied for a number of early intervention programs–all of which agreed with us. Something was not right. He could hear. He could respond. But there seemed to be a big thick wall between stimuli, cognition, and expression. (This is what makes communication handicaps so hard to diagnose, I think–his cognitive processes are AWESOME. His input and output station is full of rust and manned by slackers taking naps.)
His early test scores put him below 10th percentile in everything.
And the testing processes seemed to go on and on and on. At one point we had to tape electrodes to his head and keep him up all night and try to do a sleep study. He was three! Ugh. That was a nightmare–and a failure–and his father and I were just up to our eyeballs and fucking DONE.
And that’s when–driven by grief and desperation–Mate said something really profound that changed our entire approach. Changed, in fact, the way we would deal with our kids forever.
“Goddammit–all this testing to see what’s wrong with him! Can’t they see that he’s PERFECT?”
Yes–I know. I just catalogued things he couldn’t do. I didn’t even mention the ten to twenty tantrums a day, the inability to process that a situation was going to change and he needed to change with it. Anyone dealing with this kid would not automatically think “perfect.”
But oh God. He was. He hugged me every morning. He tried so hard to keep up with his cousins and talk and run and play. We could understand maybe one word in twenty, but he would babble to us about his day and his friends and the sky–oh, and his heart! He played with his little sister so happily–even their fights were civilized. He would become captured by moments of beauty–he lost his balloons once at the park and cried inconsolably because he would never get them back. His sister could read at four years old, and he would pick up her books and recite what he thought were the contents, so he could read too.
He was so perfect.
We stopped the quest for the perfect disorder name not long after.
Quite frankly, we did not give a flying rat’s fucking ass what the doctors wanted to call it. The education system had him enrolled in early intervention programs at two, long before the doctors even wanted to believe that we were right, and he needed intervention at all.
He was perfect.
There were things we could do–exercises, programs, classes, techniques–all geared to help him overcome whatever was getting in his way. We did those things–and he was so smart–so perfect–that he took what we could give him and he ran with it. When he was three his IEP said we needed to get his incidents of tantrums down to ten a day. When he was seven, his IEP said we needed to eliminate the one tantrum he had a week.
And things weren’t easy–his disability will never go away. Explaining to him, multiple times, why he will probably never be capable of driving is something that continues to break my heart. Walking him through social scripts of dealing with teachers and counselors so he can ask coherently for the help he needs its time consuming and frustrating.
But it’s worth it.
Because he’s perfect.
So this is what works for my family. It’s the belief that our children, when given the love and the help they need, will become the best and most perfect version of themselves. There’s nothing in there about a free ride or a miracle cure–there’s just the belief that the child we’ve been blessed with has all the ingredients to make our family complete. As parents, we just need to find the ways our kid is perfect.
I’ve heard parents of children with disabilities talk about their own children–autism, Asperger’s syndrome, OCD, ADHD, depression– so many different ways a child can be thrown a curve ball by his or her own brain chemistry, it’s truly astounding.
But every parent I’ve heard has the same belief.
There are difficulties, there are roadblocks, there are diagnoses and interventions. There are acronyms and funded education, and non-profits and IEP’s.
But all of it, all of the many approaches, the many things there are to learn about each and every disability comes down to wanting our perfect children to be as successful and as happy as we can possibly help them be.
In a world full of highly fallible humans, it’s one of the closest ways we as parents come to perfection ourselves.