Saturday, December 15, 2007

Murky Waters

My three year old exclaimed joyfully over the gift he received from Santa at my clinic's holiday party today. As he pulled out one Cars character and then another, a father watched with interest from across the table. He happened to be one of the few parents I'd never met, because his child only comes on a day when I'm not working. Turns out, his young son, also intently watching Lyle open "Lizzie" and "Boost", is a big Cars fan. Very few people - even among the fans - know a lesser-known character like "Boost", who shows up in the film for about one minute.

"Oh, we know our Cars!" the dad emphasized, giving me a knowing look. It suddenly occurred to me that I was getting the "our kids share this obsession" look from a parent who most likely thought that I was the parent of a child with special needs, not one of the hosting therapists.

This doesn't bother me, but it is always an interesting exercise for me to see my kids through the eyes of other parents who assume - because of the context, where we are - that one or both of my boys has special needs.

I remember the first time this happened, which was when Baxter was almost three and we were waiting to sign in for the Cure Autism Now: Walk Now event in San Francisco in 2003. There were precious few families around us who had only neurotypical kids. I realized this and looked over at Baxter, curious to know if he was wondering about any of the out-of-the-ordinary behaviors that barely register with me anymore - only to find him toe walking and twirling, and watching as he crashed into his father on purpose to stop himself. I giggled over the irony at the time, but also found it fascinating to realize that, put in the context of kids with sensory processing and communication disorders, my neurotypical child fit right in, by all appearances.

It's true. Baxter toe-walked his way through life until he was about 4 1/2 years old; only when he was excited but, truth be told, he was pretty much excited all the time. He was also under-responsive to touch, needing a lot of proprioceptive input to his body. He could spend hours jumping and crashing non-stop, and to this day (to a much lesser extent) seeks that out. When Baxter was four years old, I suffered through some very long Music Together sessions where he ran in circles around the room (which encouraged other kids to follow him, of course) and eventually crashed so that there was a huge pile of preschoolers on top of him. (Remember that, Stacy?) This while the rest of the class sat tamely banging two red sticks together to "Little Red Wagon". Thankfully - and to Music Together's credit (I love that program!) - the teacher had enough training to know that developmentally that's how some kids process music, and it was fine. (For the record, I'd be very uncomfortable with any music class for young children that insisted they sit to participate. Don't laugh - they're out there.) With my introduction of a modified ALERT program, Baxter learned to calm himself and participate more conventionally. Eventually. (And now I'm a little freaked out because - did you notice? - the Music Together and ALERT program websites look oddly similar!)

At the same time, he was over-responsive around his face (i.e., tactile defensiveness) and literally gagged when we put on sunscreen. He still can't stand any lotion on his face and barely tolerates the application of it all summer.

And while to me all of this raises huge red flags for sensory processing disorder, and I treated each of these symptoms as I would in a client (with input from OT colleagues), he is a typically developing child.

Then there's Lyle. Lyle, who is three now himself, demonstrates none of those same characteristics but, as I've recently discussed, has his own set of challenges.

I'm not sharing this because I think that as a parent I am in the same boat as my clients' parents. I do not believe that my experience is the same. At all.

I am sharing it because I truly understand when the mom of a newly-diagnosed child with autism says, "I guess I thought all kids did those things," or a dad tells me, "We thought he was just quirky." But the most difficult of all is, "How do I know if this issue is a typical part of development, or related to his special needs?"

It is murky. Downright murky, indeed.


tulipmom said...

Snickering here at your comment about "suffering through Music Together" .... I too have not-so-fond memories of that experience.

There's something oddly reassuring about this post.

kristen said...

Another great post Jordan. Yes, I believe there is a lot of grey area. Some kids need some extra help to get over little bumps, and some need it for life. Who knows? But the point is, you gave your son what he needed. And you were probably nervous and unsure, but you dealt with the symptoms, which is all any of us can do, regardless of the diagnosis.

Believe it or not, we were unlucky enough to be IN one of those music classes that demanded strict attention and follow along. No running or spinning allowed. We switched to gym.

Lori at Spinning Yellow said...

Jordan - Another great post!

"Suffering through music class", not-so-fond memories for me too!

Actually, we attended both music and gym along with my friend's (who is an OT) son. I must have asked her a million times if she thought his running in circles, inability to do the group activities, crashing into everyone behaviors were "normal". She always assured me that he was fine.

Sooo, murky, absolutely! I see sensory-type behaviors in Jane (she toe walks, too!), as well, but it is not pervasive or consistent and now I understand. I think your sons are fortunate that you knew how to help them with their challenges. This is why SPD is so tricky, b/c what's typical and what crosses the line is so hard to determine.

And I struggle with it every day!

Marla said...

We ask ourselves this question of normal development issue of special needs often. Maizie has been diagnosed and we still ask it. Never easy to find the answers.

Susan E. said...

This is why you're so damned good at what you do. Period. Well okay, there are other reasons. But understanding the POV of the parents is rare. And when we parents see it, we know.

Thank you for this. Beautiful post.