Autism mom, anyone?

I know there have to be a bunch of moms who have kids on the spectrum out there and I wanted to reach out to you. Our older son, Parker, was diagnosed with ASD when he was three, but once I knew what to look for, the signs were there as early as 18 months. Or even earlier if you count the sensory stuff.

Parker was a tough baby, mainly because he seemed to have chronic gas and because he didn’t want to sleep anywhere but close to somebody. And those things that’re supposed to soothe babies? Please. We didn’t know about his auditory sensitivity at the time, but things like running the vacuum or putting his car seat on the dryer only made him scream louder. And he hated the car.

He wasn’t a sound sleeper either. I quickly learned where every squeaky floorboard was because that was enough to wake him from what seemed like a sound sleep. (Ironically, now that he’s a teenager, I have the opposite problem.) Finally, I resorted to what you’re not supposed to do. I brought him to bed with me. We had a waterbed at the time and that was the only way I ever got a full night’s sleep his first year. Transitioning him to his own bed was a piece of cake. We got him his own waterbed, and since he couldn’t roll out of it very easily, he made the transition to it at 12 months and never looked back.

Until his speech evaluation at the school district (can’t beat free!), I’d never heard the word autism. We’d taken him in because he wasn’t talking much (only about 50 words at 3 years old) and didn’t respond to his name. His hearing was just fine, but the evaluation suggested some “autistic-like tendencies.” What? So I zoomed over to the internet and the more I read, the more sense it made. What also made sense was that it was also the reason for my difficulties as a child. I saw myself in what I read as much as I saw my son.

I was desperate to help him. He’d started biting himself and banging his head on things and I wasn’t sure what to do. I was sure someone was going to call CPS on us because he gave himself a black eye.

That’s when we discovered how expensive an autism diagnosis can get. $5,000 out of pocket was the first quote we got. I swallowed the knot in my throat and kept looking. $3,000 and a six month wait. $6,000 and a year’s wait. I was at my wit’s end. I knew my son had autism, but how on earth would we ever be able to afford it? Not to mention getting it in a timely manner. It was nuts. So I prayed about it. Then I found the Mapleton Center at Boulder Community Hospital. Because it was a hospital our insurance would cover most of it and there was only a one month wait. The real kicker came the day of the evaluation when we had to pay our portion – a $15 co-pay for each therapist or $45 total. I about hit the floor.

We learned a lot from that evaluation. Parker wasn’t just on the spectrum, he also had auditory and touch sensitivities. He had fine and gross motor delays. He had a hearing issue that meant that he might not “get” everything you said the first time and needed it repeated. He also had speech apraxia which meant that his mind knew what it wanted to say, it just had a hard time forming the words. No wonder he was hurting himself – he was frustrated at not being able to communicate.

Then at the end of the evaluation, the avalanche hit. What kind of treatments were there for autism? Thousands, most with only anecdotal evidence to say it worked and virtually none of it covered by insurance. Applied Behavioral Analysis (or ABA for short) was the only proven treatment, but since insurance didn’t cover it, the $50,000 per year it would cost for treatment was all out of pocket.

I felt like a failure. My son needed help and I couldn’t think of a single way to afford it. I’d also had my youngest, Jeremy, by that time and I had a duty to him too not to bankrupt us or get kicked out of our home. In the end, we did what we could afford, which amounted to speech and occupational therapy, because those were mostly covered by insurance. We were lucky. During the next open season, I was checking out other health plans and there were several who wouldn’t cover “habilitative” therapy or teaching someone something new – only “rehabilitative” therapy or re-teaching someone how to do something. We’d inadvertently dodged a bullet.

The therapy was worth it, though. Within six months of speech therapy, he was up to age level on both the number of words and complexity of sentences. We did the Willbarger therapy recommended by the school district ourselves, which helped with some of the sensory sensitivity. And occupational therapy taught him things like how to dress himself, how to hold a pencil and the like.

Even with just these things, I saw Parker begin to flourish. In the fall he started therapy-based preschool where they worked on both speech and occupational therapy in an educational setting. He was talking and even occasionally taking part in group activities. The day one of his teachers told me he’d invited a little girl to ride a tricycle with him, I cried. Such little things. Parents of neuro-typical children don’t even notice stuff like that, but it was something I could treasure.

He’d also been diagnosed with Type 1 diabetes, but that seemed almost insignificant compared to the autism. That was something we could control and make sure it was done right. Mostly. Convincing him not to swing his insulin pump like a lasso wasn’t fun, but we managed.

We had a fairly good year the next year with him graduating to Headstart, but it wasn’t until he started Kindergarten at a public charter school of our choosing that I began to think things might actually work out. That he wouldn’t be just an oblivious kid who liked lining up toys and didn’t want to look at people. I finally felt able to connect with him on a somewhat normal level and express my love for him in a way he understood. I was proud of him.

I still am, though now we’re dealing with bigger issues like motivation and getting past that teenage blockheadedness about the way the world really works (i.e. not like he wants it to.) He may never live a life like everyone else, but that’s okay. He’s already touched so many lives for the better. I know he’ll continue even if his room is a mess and he’s constantly forgetting homework. He’ll always be special to me.

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