Dr. Mom
Diagnosis Opens Door to Improvement

By Lucie Amundsen

Those of you who have followed this column may remember that my second pregnancy had some slight complications. Our son was born a nearly 10-lb guy who’d spent his gestation crammed up against a huge fibroid tumor – and it showed. He didn’t start out being the cutie he is today. I remember rocking him and saying to my husband, “This baby is going to have a great personality.”

Because of his cramped quarters, Milo arrived with a condition called torticollis - a tight neck muscle that causes infants to hold their heads steady in one position. This caused some head misshaping, which in the medical world is referred to as plagiocephaly – but to the world-at-large, it’s a dent.

So we did daily physical therapy and eventually succumbed to a therapeutic helmet to reshape his head, ensuring his skull plates grew up all pretty. It was a hassle, but we did it. DONE, finito, terminado, fini, moving on, right?
Flash ahead and now that sweet, funny boy (see, great personality!) is in first grade where he was recently flagged for some coordination issues. I wasn’t sure if I needed to take it too seriously given I’m no sport wonder myself, but I phoned my pediatrician’s receptionist anyway.

Trying to explain something you don’t really understand is a humbling experience. I was getting nothing close to an appointment even with my fancy new term “cross-midline issues.” So I just said it like it was: “My child needs to see the doctor because he can’t Macerena dance…yeah, exactly, the one with Charo…nope, just can’t do it.”

Within the next few days we were at the Occupational Therapist’s office with a name for my son’s dance-impairment: somatodyspraxia. It’s a disorder best explained as a difficulty in getting one’s body to do what you want when you want.

The diagnosis came with a laundry list of his little symptoms like favoring one side when walking, biking or even writing, difficulty with ball sports and negotiating playground equipment, frustration with tying shoes and zipping zippers, a sensitivity to noise, delayed speech – and that’s only a few. But it was like I was handed the missing owner’s manual to Milo and this new understanding of my son made me a little weepy. I finally got how hard he had been working to keep up.

Frankly, it made sense of a lot of things. His early childhood has been decidedly different than that of his sister’s, simply not taking to things like she had. This includes everything from talking to reading to numbers to handwriting. And the worst part, he recently said that he “isn’t very smart.” You can imagine the parental heartbreak in that statement, especially given what a bright and perceptive guy Milo really is.

The cause of all this was most likely Milo’s inability to flip in utero, a movement that develops the inner ear. (Other possible scenarios would include a traumatic oxygen-depriving birth or even just heredity.) If the inner ear doesn’t develop correctly it impacts one’s vestibular sense, which processes information about movement and balance. It can also lead to propriceptive issues, the sense that tells your body where it is in space.

For a layperson, it can be hard to spot. While I like to think I really know my kids, I simply couldn’t see how my son was approaching tasks differently – even when pointed out to me. Then we brought Milo’s sister to therapy with us. Belle would do an easy task, like getting on a rope swing, and then Milo would attempt the same thing. Our OT Doug would point out the different grips and tricks Milo was using to compensate for his lack of balance and strength. You’ll have to trust me on this: it was gasp-worthy.

So now we’re playing to win, going for 50-minute sessions twice a week. Milo listens to music he hates to help with sound integration, we do exercises to increase his core strength and I even brush his arms with a soft plastic brush to help with sensory intake. (Sometimes I think the therapists laugh in the backroom thinking of what ludicrous things they’ll actually get me to do next.)

While the whole process has been a little mysterious to me, out of the blue Milo jumped seven reading levels at school. I offhandedly mentioned this to Doug…who promptly took credit for it. “Doug, are you telling me I’ve been reading with this boy for six and half years and you’re saying this is about OT?” I asked. “Yeah, pretty much,” he responded. If he wasn’t so dang nice, I’d have been annoyed.

Turns out kids with dyspraxia issues typically have poor strength and after months of exercise on all of the cool equipment in Doug’s office (picture McDonald’s Playland on steroids) Milo has made gains. So instead of spending so much of his mental energy keeping his balance in his chair, Milo can spend his reading time, well … reading.

Same goes for handwriting now that he isn’t constantly trying to steady himself on his desk, too. So while I still can’t pretend to understand everything about somatodyspraxia or its treatment methods, THAT one piece right there made a lot of sense.

Soon Milo will be finishing first grade and these days he’s feeling better about schoolwork. I like to think he is developing new perceptions about himself and that makes even me want to do the Macarena

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