Sunday, May 31, 2009

Disorder Du Jour

Recently, a comment was made about my “Picky Eater” blog post. It was short but sweet. It said “Your son sounds like a pain in the you-know-what”. Well….yes. But no. But yes. Sigh. If only it were that simple.

Chances are, you haven’t yet heard of something called Sensory Processing Disorder. Well, I hadn’t either, until last year. Here’s how it all went down. When my son was a toddler, he was very selective about his foods. Being a first time mom, I subscribed to many parenting magazines and had read several books on parenting. This finicky toddler behavior pointed toward normal, but still…my Mommy gut wasn’t so sure. I couldn’t put my finger on it, but something wasn’t quite right. I talked to the pediatrician about my son’s eating habits and was assured this was normal – in toddlers. Fast forward out of the toddler years. It wasn’t just the eating issue. He seemed overly (and I mean overly) sensitive to other things. Sunlight bothered him. Loud noises bothered him – fireworks and hockey games were torturous – for all involved. The start of a lawn mower would send him screaming into the house. Clothing tags irritated him. A seam on his sock that didn’t sit quite right could cause an all out meltdown. When we cooked certain foods, he was so bothered by the smell, he would actually cry and refuse to enter the kitchen area.

My husband and I were frustrated and confused. Autism was in the news constantly and our son was exhibiting some of the signs. I discussed my concerns about my son’s behavior with a family member, who in turn mentioned it to my brother, who was good friends with a pediatrician in my area, who asked me to call her. So I did. And I talked. And she listened. I expected her to tell me I was slightly ridiculous and send me on my way. Instead, she suggested I see a Developmental Pediatrician. So we did. And I talked. And she listened. And she told me to start by setting up an Occupational Therapy evaluation. This would be to track how he was doing in areas such as strength, motor skills, and sensory motor development. On the order I was to take to the OT (Occupational Therapist), she had written two things: “evaluate for Hypotonia and Sensory Processing Disorder”. The moment I returned home, I looked these terms up. Hypotonia is basically a disorder characterized by low muscle tone. It is relatively common and can affect development in several areas, the main ones being gross and fine motor skills ie: catching a ball or buttoning a shirt, to name a couple.

Sensory Processing Disorder. Um...okaaay. Clearly the made up disorder du jour. Apparently OT services are in high demand, as the soonest available appointment was several months away, which was fine because the paperwork they sent me took about that long to complete. Included in this mountain of paperwork was a twenty-something page questionnaire. Some of the questions went a little something like this: Is your child bothered by sunlight? Is your child bothered by loud noises? Is your child irritated by clothing tags and seams? Is your child a picky eater?

I was OUTRAGED. This reeked of SCAM. I had been a victim of espionage! When I looked SPD (Sensory Processing Disorder) up on the Internet, there were tons of official looking websites and parent stories. So what? Obviously fabricated. There was mention of some books on the topic, so I went out to my local library and checked a few out, if in fact they actually existed. One book in particular struck a chord with me. The Out-of-Sync child, by Carol Stock Kranowitz. I was skeptical when I cracked open that cover, but boy, by the time I finished, I was shocked. The book had been written about my son! This SPD stuff started to feel real. I contacted the author, who lives 20 minutes away from us, and introduced myself and told her that we were booked for an OT evaluation, which she confirmed as the appropriate next step to take. She was friendly and helpful and told me she would be happy to help out if I was stumped along the way. Thank goodness for the nice people you meet on this journey of motherhood!

The diagnosis of Sensory Processing Disorder was confirmed after several visits to the OT. In terms of the eating issue, my son was on the mild side. There are cases that are severe enough to warrant feeding therapy. There I was complaining that my son would only eat six things, when there were ten year olds that had never ventured beyond goldfish crackers and yogurt. EVER.

My son began a weekly therapy program which focused on his low muscle tone and the parts of his SPD that could be improved through therapy. The thing about SPD is that there is no “cure”. There is no medication that will treat the symptoms, but as kids grow and mature, it will improve. Why, then, is it even worth the time to go through all this evaluation and diagnosis business?

Well, in my experience, the diagnosis helped me to understand my son better. There was a reason for the quirky things he was doing. When he would fall off his chair for the hundredth time (he still does!), I am better able to understand that he is not fully aware of how his body relates to the space around him. When he says “I can’t help it”, I have to pause and realize that it may very well be true. Finding that delicate balance between understanding his disorder, and wondering if he is playing me has been quite the challenge. I’ve had to face the fact that my role as a parent in shaping this young person is huge. I don’t want to baby him because I need him to learn how to take care of himself when he is in a situation where I am not there to help him. And I am trying to back off a little bit on the food issue. If he has agreed to try a new food, but has to do so over the trash bin, looking like a Survivor contestant during a food challenge, I have to understand that it’s not as easy as popping a morsel in his mouth, chewing, swallowing and moving on.

While I don’t believe that SPD is the sole reason for the “atypical” way my son behaves, I do believe it is part of the equation. I try to appreciate his quirks – at least life is never boring on the homefront! And there may be times when he is a pain in the you-know-what, but he’s MY pain in the you-know-what and really, I can’t picture life any other way.

Oh and P.S. – another reason I suspect that SPD is very real is the fact that my insurance company paid for the OT 100 percent!

So, this is the part where I need to point out that I am in no way, shape, or form an expert on Sensory Processing Disorder. I’m just a mom sharing my story. Here are some of the sites where you can learn more about SPD from the pros, with a few articles and a video thrown in for good measure:

1) this site includes that lengthy checklist I was talking about.
3) Carol Stock Kranowitz’s site
4) The Official Foundation

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