Monday, May 22, 2006

All Autism All The Time

I've been scarce lately. The usual demands of family and household coupled with the extra lovely weather have kept me from taking up my usual end-of-the-day-too-tired-to-do-anything-else post in front of the computer.

Also, I am trying to take a break from autism. Because around my house -- or at least around my head -- it is all autism all the time. Since Oliver's diagnosis on August 4, 2005, I have barely thought of anything else. So now I'm practicing taking time off. And by that I don't mean that I'm taking time off from Oliver, but just from the autism. I want to regain some of what I lost when the word autism came to rest with us. I want to remember what it was like to look at Oliver as a whole little boy and not a list of behaviors and characteristics. He deserves that. And so do I.

Last Thursday we took Oliver to a medical center in a nearby city so that he could be evaluated by a developmental pediatrician. I had been putting it off because we already had two evaluations, one through the school district and another through a local university. But a friend, who is a neuropsychologist, urged me to take him to see a specialist so that we could rule out any other conditions that might present autism-like characteristics. I didn't believe that to be the case but figured that we might as well check the box anyway. In some ways I wish we hadn't.

But I'm also glad that I waited until this point in our journey to check the box because I felt empowered by having 8 months of experience and knowledge under my belt. I didn't doubt for one second that I was the expert in the room when it came to Oliver. It also became clear to me how one-dimensional these assessments are and I made up my mind on the drive home that I will never have him evaluated or assessed in this way again. What is the point? Why should I keep measuring him when I see before me a child who loves, laughs, and is full of potential?

I asked the specialist at the end of the evaluation about her practice. She follows more than 2,000 children in our state. She sees an average of 20 new children each week. She was very kind and wonderful with Oliver but I left feeling as though I contributed to the statistics she will use in her next paper but that we got very little out of it. She said she wants to see us again in six months but I doubt we will keep the appointment.

Oliver did pee on the potty in the public rest room though. He'd never done that before so we were thrilled. And at the end of the three-plus hours in a small room with 5 adults he started hitting himself in the head with the mega-blocks. He'd never done that before, either, and we weren't so thrilled. Actually, after three-plus hours, he wasn't the only one who felt like hitting himself in the head.

Autism rules my life at the moment, and probably will for a long time to come. And that's OK, I guess, because even though I came to motherhood slowly, I'm still the mom after all. But the trick, and the test, is not letting it rule Oliver's life.

And If I do, just hit me in the head with a mega-block, OK?


  1. It is hard not to constantly focus on the autism and ask yourself, "Did he just do that because he's autistic? Or, is he just being a kid?" NT kids hit themselves with mega blocks, too. :-) It is hard to stop the scrutiny and I commend you.

  2. Oliver is toilet-trained? That in itself is a most impressive accomplishment!!

    Not everything he does is going to be because he is autistic, he is still a child after all. I'm glad you are willing to see him as a whole human being and not just the sum of his parts. Kudos to you!!

  3. I think it is okay to check out another opinion on the Autism. We did it technically 4 times between our school district, our pediatrician, a neurologist and a center that specializes in diagnosing autism. It was yes, yes, yes, yes. I think that when your child does things that seem age appropriate, you want to second guess and just make sure, and to lead them down the correct path. As someone once told me, you nurture and take care of the individual symptoms, not the cause of the symptoms (Autism), so it doesn't really matter what you call it.

    I laughed with you, not at you for your doctors appointment/assessment, as I swear that my Sam always puts on his best autism show in the office. Ughhh!!! Even if we have made huge progress, the things he happens to do there can make our doctor think otherwise.

    You did what you needed to, and you do what you feel is best at the time. Hind sight is 20/20 for everyone. Just look ahead. That is what we always have to do. Great post to a great mom. Keep it up!

  4. I'm not sure I'd let C get evaluated again, mostly because I hate answering the endless questions about his abilities, inabilities, behaviour, etc. Plus, so much of what they ask is typical of autistic kids and NT kids. Does he sit in a W? Well, yes. But so does my friend's NT child. Does he tantrum? Well, yes. But he's 2!! The only reason I'd consult another professional at this point would be to ask them what their opinion is on various therapies. Of course, I've never met a doctor who can give me an opinion on that stuff. My son's pediatrician actually asked me, "What's ABA?" Ugh.

  5. I can relate to taking a break from autism and not letting it rule your child's life.

  6. Great, great post. I have hung onto my job--though it creates plenty of additional worries and then it's not just Charlie or my husband Ii might be annoying, it's people at work---but it has been to good to think about "something else" not only for me. For Charlie.