Monday, May 11, 2009

Diagnosis: The End, or a New Beginning?

I originally started writing a pretty random, rambling post for you all to be confused by, but halfway through noticed that I was talking about diagnosis. And the weather. And ducks. I'm not sure why, Jaymes was diagnosed a very long time ago. The weather is rainy. There are no ducks. Go figure. I guess it's just on my mind.

Jaymes was diagnosed November 11th, 2005. It was a rainy day, and we had an 8am appointment. I was sleepy, Jaymes was not. I do not recall Jason being there, I think he was at work. The testing was your typical, slightly informal assessment. An OT, a SLP, and a Developmental Pediatrician were present, as well as our Early Steps coordinator. We were in the little playroom at Early Steps HQ. Early Steps is the name for the Early Intervention program in the state of Florida, by the way.

Jaymes didn't want to play. He wanted to crawl away, or scream. He ignored the doctor's attempt to get him to hold two blocks and bang them together. He crawled under a chair and stared blankly at the wall. He made no eye contact, he flapped his hands. He was stonily silent except when touched or when pushed to do anything at all. Then he was tearful, screaming like he was being devoured by mountain lions.

Jaymes was almost two years old. He couldn't hold the blocks, he couldn't walk well, he couldn't do a small puzzle. He wouldn't make eye contact or interact in any way at all.

It wasn't hard for everyone to reach a consensus. It was pretty obvious, even to me. Jason didn't want to believe it, and had brushed off my concerns about there being anything wrong. My mom had mentioned autism, and we both brushed it off. He was fine, just a little bit of a late bloomer. Then I started researching, and I knew. I'd known before this assessment, which is why it really was no more than a formality to me. At 1 1/2 Jaymes had every major sign of autism. He toe walked, he hand flapped, no eye contact, wouldn't eat much, screamed most of the time, was very withdrawn and serious, rarely smiled, started to babble at 6 months then stopped. He spun in circles, he craved sensory input. There was no overstimulating Jaymes, lights and sounds and movement were like a drug to him. They calmed him, comforted him. They still do, actually.

The team seemed a little surprised when I responded to their carefully phrased explanation of the testing results and his diagnosis with "I'm not surprised, thanks for your time!" I'm pretty socially awkward, and most of the time what comes out of my mouth in no way manages to convey the right message. I always end up sounding like (A) an uneducated hick or (B)a clueless moron or (C)Like a stammering nutball who has had a few too many drinks. Jaymes and I share in our lack of social skills I guess. I prefer him to the majority of people I meet anyway.

Anyway, a lot of people thought it was odd. They expected me to cry and sob, and bemoan our awful fate. After all, autism isn't curable, it's a life sentence. But I guess I didn't think of it that way. It didn't change how I looked at Jaymes, nor who he was. I'd like to say autism didn't, and doesn't, define Jaymes and us, but I'd be lying I think.

Autism does define us, to a point. When Jaymes is making a ruckus at Walmart and someone demands to know why I'm not slapping my brat to teach him to behave, I explain that he has autism. I use it as an excuse in a lot of cases, because that's what people understand, that's what is simplest. Autism tells us where we can go, to a point. We rarely, if ever, take Jaymes to the library. I avoid taking him to the post office, or anywhere with long lines. But, we always include him in daily living activities. Yes, he'll scream at Walmart, but we need groceries, and he's part of the family. We ride it out. Autism tells us what to do. We wear belts, because Jaymes gets upset if we don't. We do things in a certain way, at a certain time, in a certain routine. Autism tells us to. Jaymes appreciates it. It works.

Autism changes things. When you're pregnant, you imagine a perfect little kiddo who will grow up doing playdates, playing the piano, getting A's at school, going to med school, and becoming a success. I never imagined that my idea of a success worthy of celebration would be the day Jaymes held two blocks and banged them together at age 3. Or the day he called me mommy, at age 4. Or the first time he ate a banana without spitting it across the room and covering his eyes, at age 5. I never pictured scrubbing poop murals off his bedroom walls as a typical morning chore, nor did I expect to be buying diapers for a 5 year old. I didn't know every trip to Walmart would be humiliating.

I also didn't know how much patience Jaymes would teach me. Or that he would push me to be more assertive, to fight for what he needed. I didn't know that one little boy could push me so far above what I was, to become a parent who is actively involved in her child's life, therapy, school- everything. He has taught me to stop being shy and awkward and just do what needs to be done. He has taught me to see the beauty and humor in every situation. He's taught me to laugh like a fool when I drop any entire bowl of chocolate pudding and it splatters every inch of the kitchen, and he's taught me that even in a messy, choclatey situation all one has to do to make it worthwhile it sit on the floor and grab a handful of pudding.

So no, life didn't end for me when Jaymes was diagnosed. It changed. I didn't cry, but I know people who did. We all react differently. I took it for what it was- a fact of life that wasn't going to change just because I was unhappy about it. I didn't obsess over the cause, I chose to focus on the future instead. It works for us, might not for others. I don't hate autism, but I do not love it either. I'm at that point where matter-of-factness meets autism acceptance. I accept it, I'm ok with it, but I don't tout it as the best thing to ever happen to us. It is what it is. We go day to day. Sometimes it's great, sometimes not. Sometimes smelly, sometimes amazing. Poop is poop, nothign grosses me out anymore. Except spit, but that's a whole other blog post.


Chun Wong said...

A brilliant post. I love the bit when you say:-
"So no, life didn't end for me when Jaymes was diagnosed. It changed. I didn't cry, but I know people who did. We all react differently. I took it for what it was- a fact of life that wasn't going to change just because I was unhappy about it. I didn't obsess over the cause, I chose to focus on the future instead."

It's great that you were able to move on from the diagnosis and accept, you sound very brave. I know a lot of parents go through a kind of grieving process, when they find out that their child has some kind of disorder, they grieve for the loss of the child they expected. I suppose that is understandable, but at some time you have to accept it and move on.

Great post and great blog.

Chun Wong

Amber DBTD said...

Thank you ( :

I guess I didn't see it as grieving for a child I could have had, because this was all Jaymes had ever been. I never could have had anything else, and I don't really think I'd want anything else, knowing Jaymes the way I do now.

Maddy said...

So many unknowns, so many questions, it's no wonder I spend half my time spinning in circles or maybe just spinning my wheels. Great post.

Princess Fiona (according to my husband) said...

Brilliant post, I could read your writing all day. Please tell me you will put a book together one of these days (hahaha, in your spare time!!!!)

I don't see how you could ever come across as a stammering mess. Grieve was exactly what I did, for about 3 days, then I kicked myself up the butt and thought of my sister who's daughter had passed away the year before while waiting on a transplant and realised just how lucky I was. Then I got on with it.

Amber DBTD said...

Princess Fiona- LOL, I'd thought about writing something, but I'm really only good at daily random rambling. I'm afraid I'm lacking the organizational skills to ever actually write anything substantial!

And you're right, we are lucky. We have our kids and they're (for the most part) healthy.

Maddy- Can I spin in circles with ya? Thank you for the compliment ( :

Crystal said...

Great post!