Saturday, December 26, 2009

whither the OT? (part one)

Okay, so you might recall that oh, back in September, maybe? I mentioned a drift of stuff, and an OT report buried in there somewhere. Well, it was. And it all started last year, with a teacher grab & chat:

Teacher: just so you know, the Eldest has been disrespectful in class today.
Me : oh, no!
Teacher: yes. This is a real problem. You will speak to him?
Me (calculating bucket volume, withdrawal quantities): absolutely.

And I did. And then I did again. And was informed that I needed to do so again. I changed gears, shifting my tone from understanding to irate. Each time, the Eldest promised to try, and I do believe that he did. It was an uphill battle: the kid just didn't like this teacher, and offered me any number of reasons why not. Listening to other parents, I realized that the Eldest was not unique in this, and changed gears. After a long chat with the boy about being respectful to those in authority, be they oh so irritating to folks under a certain height, I went for an end run.

If I complain about a teacher, then I am yet another mom, blaming everyone but her kid. But if another member of the school has a professional concern, ah, well. That's different. So I sat down with the school's learning guru, and asked her to offer a fresh pair of eyes. Maybe there's something I'm missing, I said, certain that there wasn't. I'd love to hear what you have to say, I said, sure that I already knew.

What could follow a set-up like that, other than the part where my jaw drops faster than my hand can catch it? Right. He seems to need to move more than the other children, the guru told me. He's mostly moving to get some sort of physical contact with something - it's disruptive, but doesn't seem to be deliberately so. Oh. I took furious notes for roughly half an hour, and then stared at them. Are you talking about ADHD? I asked.

Her pause scared me. Not necessarily, she said. What do you know about sensory integration?
Um, I said.

My understanding is that sensory integration is essentially when one or more of the senses is either too sensitive (everything sounds very, very loud, or most fabrics feel like sandpaper, and the tags on that shirt are pure evil) or under-sensitive (noise! need noise! need textures to feel, rub and roll in! Need to live on the swings, back and forth, back and forth, whooosh-up, whooooosh-down, whoooooooooshhhhhhhh). There's more to it, of course, and apparently you can have one sense turned way up to hypersensitive, and one way down, to under-sensitive, and a kid frantically trying to feed the under-fed sense (under-sensitive) and protect another, overloaded sense. Or so I understand.

But I have to admit that I learned this from sources other than the CDC, and that makes me a little, oh, twitchy.

From what I can tell, sensory integration dysfunction, or sensory processing disorder is a big, hissing argument between experts, with kids tangled up in the middle. I know parents of autistic kids who swear by the therapies, who talk honestly - poignantly - about the effects of the condition, and there are certainly any number of earnest, if not enthusiastic foundation/professional websites. And a book or two. The diagnosis has been around since the 70s, but there's no entry in the DSM-IV (TR) for sensory integration dysfunction. Will there be in the 2012 edition? Maybe. There are articles in journals. Databases being constructed. Hmmm, said my data-loving guy, and valiantly tried to raise a skeptical eyebrow.

Certainly, it didn't bode well when we discovered that the local experts did not accept insurance. Nor, I was told, would our insurer cover therapies for sensory integration, when provided by an otherwise in-network medical personage. Although, our go-to insurance person said, this was not because of the lack of formal diagnosis - it's an occupational treatment, not a medical one, said the nice lady, and both sides braced for the argument.

(purely gratuitous note: I won it. On a technicality, but still. Ha.)

Sitting in the guru's office, I smelled a concerned parent trap - one of those things that you can't ignore (concerned, right?), because it might be causing your kid problems, and you can't quite dismiss. So, you end up feeling obligated to plunk down hours, co-pays and oh yes, brain space on it.

And oh, I know that a kid with one medical condition can start a collection of them, as other diagnoses march in and politely join the group. Maybe it's because there's lots of people who care about the kid, and they are watching. The Eldest's grandfather calls it the medical microscope, and when it's on, says he, seek and ye shall find...something. But I wonder if the working assumption is that if the kid's cracked in one way, then surely he's cracked in another.

Silence fell in the room, while the guru waited. And I knew what I had to do: the unspoken deal between a school and a parent of a kid with a bucket is, we take you seriously, and you take us seriously. It's fair, respectful, and makes for a decent working relationship.

I settled on a position of sincere skepticism, and asked politely for second opinions. The school learning guru agreed to talk to some relevant medical types who know the Eldest, and heads were put together. Notes were compared. Because, I pointed out, a kid who is (alas) annoying, who clowns or is uncooperative could be a kid under stress. And some degree of stress is the way of things when you have a chronic condition. So, before we slap another label on the kid, let's take a moment to think about whether this is just an old wolf, in a new outfit. Please?

When the huddle broke, the guru's question still stood firm.

The coping clinic, a.k.a. psychiatrists at Big Famous Local Kid hospital who specialize in kids with chronic medical conditions, said that roughly 20% of children with chronic medical whatnots, also have some sort of sensory out-of-whackness. The psychiatrist and nursing chief at Hole in the Wall told me that their kids with diabetes and bleeding disorders have amazing pain tolerance - and we hemo-mamas tend to say the same. High pain tolerance could be the result of desensitization, I was told. And nobody laughed at the idea of putting this sensory thing and the Eldest in the same box. It's worth looking into, I was told by the coping clinic.

And I just didn't know if I wanted to agree.

The Eldest has a humbling array of coping mechanisms, from cuddles to thumb-sucking (with his dentist's reluctant approval), to the particular, odd sensation of the skin as it slides over a bony joint. Try rubbing the skin over your elbow sometime, sliding the skin over the bone. Does that feel good? It gives me the willies, but that soft-bony combination does something oddly soothing for the Eldest. A solid, loving squeeze makes something in the boy relax, resetting some sort of emotional metric. When I throw in a small rocking motion, he becomes boneless. He goes into my hugs wired, frustrated, furious, shriekingly joyous - and comes out a solemn-eyed happy. Calm. Like whatever he's carrying at that moment got rebalanced. But couldn't that come from the love, wrapped around him and holding him close? The silent, snug reminder that I love you, and I'm here?

Maybe. And maybe, echoed the learning guru, the coping clinic, the things I read and my own instincts. And so, sensory integration? I said, staring at my pages of notes. I've never heard of it. And the lovely, thoughtful guru at the learning center explained. You start with an occupational therapist's evaluation... and we did.

Oh, and the teacher? Ah, well, said the guru. And smiled apologetically. You might want to cut your losses there, she sighed. My shoulders slumped. If she'd disagreed with me about the teacher, then I'd have labelled her as a Person to Manage, but not a person worth listening to. But she agreed, offering a number of thoughtful observations while clang! went the concerned parent trap, and ouch, went my foot.

And possibly also the kid's.

next post: what the OT saith (part two)


Joy said...

Sometime we should talk (in our copious free time 'natch) about how sensory issues are prevalent and powerful and I (personally, unscientifically) think they are a very natural part of childhood. I'll tell you my own sensory integration fun that I remember oh-so-well from childhood and how nobody noticed because I made with the small fidget, not the big fidgets. And since I'm a quiet, noticing-of-details sort of fidget, I see them in others.

IMHO, It's not just a medical microscope, it's a microscope turned onto childhood generally. Stuff we never saw (culturally speaking) is now in sharp focus so we must name it a condition.

Miryam (mama o' the matrices) said...

(triumphantly) YES.

Or at least, I think YES. Possibly a yes? Mostly a yes?

Certainly, we're now looking critically (and diagnostically) at children, with a new intensity. And that does blur the line between diagnoseable problem and just plain kid bump in the kid road.


I'd love to have that conversation.

Rixblix said...

I agree with Joy. My boys have their quirks. Sam insists on short sleeve shirts (always has) can't stand stuff around his wrists. Except for his medical bracelet. Year after year, when we go to replace it, I ask if he'd prefer a less noticeable necklace. He says no. We even went for a "hemp/leather" bracelet but he didn't like that. The feel and clunk of the bracelet is comforting to him. Nat-the-younger much prefers his necklace and especially long-sleeved shirts. He also likes "skinny" jeans and is very "mouth" sensative to squishy things. (He doesn't like peas or corn but tolerates broccoli) As I have come to know my kids better as well as their idiosyncrasies I have also come to realize my own weirdness. I love a good Italian Beef but I can't stand when it's "wet", I have to have my au jus on the side. Similarly, I cannot stand restaurant pasta unless it's cooked to order...too squishy....I'm an al dente gal. As I child, I didn't know that there are words to describe my preferences.

We've had school years where the lessons my boys have learned were as much about acceptance, tolerance, and patience as they were about reading, writing and math.

And, finally, even at ages 11 and 13, I can still (albeit rarely) get them to cuddle and let me "tickle" on their cheeks...that used to always calm them when they were babies and had to have icky stuff done to them. Mine had to contend with adults it their personal lives who treated them as kids with more maturity and adults in their "public" lives who still regarded them as wee ones.

Hang in there...let go a little bit...and enjoy the ride. It's a wild one!

Libby said...

My son has neurological problems that are at this point (6yo) labeled but still not diagnosed. He's had OT (plus PT & Speech) since 18 months. At that point the OT was confident that he had sensory integration dysfunction, and treated him accordingly.

Nowadays I truly doubt that his problems are/were of sensory origin, but that was the best handle at the time to grasp on to them. I also think that the therapies he received under the sensory integration mantle were exactly what he needed.

It would be nice if the medical choices we made for our son were decided less often by "It might not help, but it definitely won't hurt." That's easier to say than do when you're squeezing yet another copay out of the budget.

I'm looking forward to part 2. Good luck.

Miriam said...

My oldest nephew had Sensory Integration Dysfunction, so strongly so that without the extremely intense multilayered therapies he received (gratis, from the city - ah, NY), he never would have spoken, and his awful behavior problems would have continued and worsened. Watching and learning from him and from my sister, I believe SID is like most things - there's a spectrum, and some kids lean towards one or the other end of it. Brilliant and helpful insight, no? ;) It would be easier for you if the Eldest were more extreme. I'll ask my sister if there's a way to make it worse. ;)

Good luck, M.

Abacaxi Mamao said...

I probably have some sensory issues. I always hated eating wet and dry foods together (cereal with milk, salad with dressing, pasta with sauce, anything a la mode) and refused to wear tights starting in 2nd or 3rd grade (this, with outdoor recess in Boston winters while wearing the mandatory skirt!). I still don't love tights/pantyhose, tight clothes, or turtleneck sweaters. I never have cereal with milk (haven't tried it since I was 3), will never dress my own salad but will eat it if offered to me (since I was about 18), and got on board with saucy pasta when I was 18, too. I am looking forward to reading upcoming posts on this.

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