Martin’s body has changed. Before we changed his diet, Martin was lanky with a slightly distended belly. He hovered around the 90th height percentile for his age but only the 50th weight percentile. With the dietary changes Martin began to fill out. At last check he was in the 92nd height percentile and the 78th weight percentile. His belly, meanwhile, deflated. Now I wish for abs like Martin’s.
Martin’s head circumference was and remains large, and I don’t expect that to change. I understand large head circumference to be common in kids on the spectrum. I will, however, point out that my own father has a ridiculously giant noggin—well above the 99th percentile, I know because a geneticist at the Big Imposing Hospital asked me to measure it, which I did with my yellow plastic sewing tape. Moreover, a person would be hard-pressed to declare Adrian small-headed either, figuratively or literally. So I figure that, with giant noggin-ness on both sides of his family, Martin was headed that direction from conception.
We were surprised to learn, when Martin first was diagnosed, that he had low muscle tone; he always had seemed able to run and climb, and it’s easy to mistake those actions for strength. But a neurologist at the Big Imposing Hospital said, and Martin’s excellent Track Two doctor confirmed, that his muscle tone was low. In fact, Martin’s trunk strength was so lacking that he slouched whenever he sat. The muscle-tone issues now have almost completely resolved. Martin’s physical therapist recently said that his muscle tone has become more or less indistinguishable from that of a neurotypical child.
Martin used to cycle in and out of lethargy. About three-quarters of his waking hours he spent in Tasmanian-devil mode. The remaining time he collapsed on the floor, maybe pushing a toy back and forth, without the energy to rise. I cannot recall the last time we experienced lethargy—Martin’s, that is; I’d be happy to enumerate the dozen or so times today when I felt lethargic—that was not connected with a sleepless night.
Until this spring, Martin did “posturing,” from discomfort: He clutched his stomach and leaned forward or squatted. He fell asleep posturing, in a quasi-fetal position or with his backside thrust skyward. He even postured while running, which might cause him to pitch forward and slide headlong across our hardwood floors. Though it seemed inappropriate from me and Adrian to laugh, we did. Occasionally.
Martin used to do a lot of “tip-toe walking,” or ambulating by shuffling his feet, heels off the ground. These days he uses a conventional heel-to-toe step, except on bad days when he reverts to tip-toe walking. Then a few reminders to do “big-boy walking” usually snap him back to heel-to-toe.
In terms of where we have room for improvement, of course I’d like to see the elimination of all tip-toe walking, unless Martin is, well, consciously tip-toeing, like in a game of mischief. His coordination still needs work, too. I think we’ve come a long way since the Big Imposing Hospital scored him in the bottom 1% for manual dexterity. Nevertheless, his pincer grasp and objection manipulation still lag. Also, Martin is a klutz. (I blame this, like the big head, on Adrian. I won’t say “klutz” about Adrian, but the term “penguin feet” does come to mind.) If Martin is going to fulfill my—I mean, his—dream of playing the U.S. Open tennis tournament by age 20, we’ll need to stomp out the klutziness.
Finally, one additional aspect of physicality is appearance. And dagnabbit if throughout this entire process Martin hasn’t been getting cuter and cuter.
Or perhaps that’s just the mommy in me talking.
I just found your blog and I’m loving it, it’s truly admirable! Congratulations to you and Martin!
Thank you for your kind words. I’ve been blogging for only about a month. I’ve also received a few messages via Twitter from other parents, and each time it’s like an energy boost to keep me going. I hope you will find the thoughts and information here useful on your own journey, whatever it may be.