Monday, July 30, 2007

Sensing Change

To the untrained observer, there is nothing remarkable about the photo of Eli at the top of this post. Your run-of-the-mill, happy-go-lucky two-and-a-half year old. But to me, there is something very important about this photo, taken just 10 minutes ago. What? Eli's shirt.

Eli is developmentally on-track and perfect in every way. Like every human on this planet, though, he has his challenges: For him, smells are a particular struggle, as are (to a lesser degree) touch, visual stimuli, and sounds. To put it succinctly - but also to vastly oversimplify it - he has Sensory Processing Disorder or Sensory Integration Disorder. This is a very wide umbrella that covers so many symptoms ranging from hypersensitivity of the senses to hyposensitivity to the senses to difficulty with the sense of movement or with the sense of one's own position in relation to the world. For Eli, it means he reacts very strongly to certain smells - often to the point of gagging, sometimes to the point of vomiting - and can't stand to look at various foods. He doesn't like loud sounds, he's not a fan of finger paints (or of many other activities that require messy hands). He is also sometimes more aware of the tags in his shirts than the princess was of the pea. And since he began having a say in what he wears he has flatly refused collared shirts.

We didn't think much of most of the things I just listed; he is two, after all. Wouldn't you expect him to have some very strong preferences, especially ones that make little sense to an adult? But the gagging and refusal to even look at some dinners was making for very tedious meal times. When I saw an advertisement for a seminar on picky eaters I signed right up. The nutritionist who led the group was wonderful and talked a lot about offering reasonable portion sizes and about exposing young eaters to as many foods as possible. Even if they wouldn't eat it, let them see you eating it. I raised my hand: "What if your child won't even let you eat most things in the same room as him?" She asked: "Does he get gaggy, too?" When she said that, it was as if the heavens had opened so the angels could sing. This woman got it. I said "Yes," she said, "talk to me after," and a plan was hatched.

A couple of weeks before this a friend of mine who is an elementary teacher suggested that Eli might have some sensory issues and said I should look into Early Intervention. Not having a clue how it worked, I thought I needed to go to my pediatrician for a referral. So I made an appointment and hunkered down to wait a few weeks. It turns out, as I learned from the nutritionist, no referral is necessary at all. Just call, say you'd like your child evaluated, and they will come. So I called, said I'd like my child evaluated, and they came.

The evaluation was pretty straightforward. In order to qualify for services, Eli's sensory woes had to be delaying his development in one area or more by at least three months. Of course this wasn't slowing him down in the slightest with his language or cognitive development. He did, however, score a little low on "self care." Apparently, the fact that he doesn't show interest in getting himself dressed or undressed and the fact the often chooses not to use a fork puts him behind other kids his age. That (with a couple of other low scores) qualified him to work with an Occupational Therapist (OT).

So for the last couple of months she's been working with Eli once a week, trying to develop his central nervous system and to desensitize him to various tactile, auditory, and olfactory sensations. She gave us the details of a "sensory diet," which requires me to spend 15-20 minutes every two hours or so stimulating his proprioception and vestibular system. What it really amounts to is me helping him to bounce, march, crawl, or roll. Big movements. Being at the playground counts, so we try to make it there every day.

Eli is also very lucky to be part of an Early Intervention playgroup where he spends 90 minutes a week with 9 other kids and 5 OTs having all of his senses stimulated while experts work through the rough spots. For the first several weeks they gave the kids cheese as a snack because it's one of the things that tends to trigger Eli. Last week I watched him through the one-way mirror as they asked him if he wanted crackers or apples. His response? "No cheese this week!" You can't put anything past my boy.

In the fall he'll start Hippotherapy, which is basically work with an OT while he's on a pony. How fun is that?! But the smells of the stable and the texture of the horse and the movement of the ride - these will all be fantastic for him.

There are some days where I feel like all of this is much ado about nothing. I mean, he'll grow out of it, right? But what I always came back to was the worry that he wouldn't outgrow his trouble with smells and I'd have to send him off to school, knowing he'd end up in the stinky cafeteria. Knowing that if the smell bothered him enough, he'd get sick. And knowing that if he got sick, he might be embarrassed or - worse - be made fun of. That was enough to cause me to request the help.

And, as you can see from the picture, things seem to be working. He still has plenty that he doesn't like but look at my boy in his collared shirt! Just look at him! What a little man.

It has been on my mind since I started this blog that I wanted to post some details about all of this. When Eli first started having trouble with smells I googled the heck out the problem and came up with nothing. I didn't have a name for it so I stuck to search terms like gag, gagging, smells, etc., and the only thing I found was an old post to a message board - probably four or five years old - from a mother with the same problem. Sadly, no one had responded to her question. So my hope is that if someone else has the same trouble we do and they're not sure what to call it and not sure where to turn with it, they'll come across my post and know immediately that they aren't alone and that there is something that they can do. So I'm putting out there to the blogosphere, and even if it forever stays with "0 Comments" just below it, I won't care. It needed to be said.


Anna said...

Great post--sounds like you've got great tools to help him.

And do you read amalah? Her little boy has sensory processing disorder, which for him seems to be mostly about delayed speech. She's been posting a lot about it this month, her son is newly diagnosed.

Merrily Rolling said...

Anna, I feel like a recluse who's been alone too long. Like I should be frantically hiding old newspapers under couch cushions and putting dirty dishes in the sink where they belong. I've been alone here for a while! Thank you for coming by.

Thank you, also, for directing me to Amalah's blog. I just paid a visit and left her a comment. I'll be back over there because it's nice to feel connected to someone else with all of this.