Here are the bare outlines which sound at best apocryphal

We never had to support Wally's head, even as a newborn, even the day he was born. We didn't have to pass him carefully from one person to another, making sure to "watch the neck". You just tossed him around like a football. Anything he needed to hold up, he held up himself.

By two months, he was supporting his own weight on his legs. You could just lightly help him balance.

I don't have any pictures of anyone holding Wally where he wasn't struggling to break free.

At the 6-month visit our pediatrician told us Wally was the strongest baby he'd ever seen.

Until recently, he never seemed to register pain of needles for more than a split second.

He crawled for a day at around 5 months. From then on he was standing and trying to walk.

At 8 months Wally walked holding on, by 10 months he was walking all over the place by himself no hands, including climbing stairs (one leg, one stair, like an adult, same going down).

He runs barefoot on pebbles, blazing hot pavement, and pointy mulch.

Wally never sits by choice (except in the car or a swing). He never walks if he can run. I'm sure he'd never run if he could fly.

He has many times taken enormous spills and had no reaction. In April he ran headfirst down a hill into the Atlantic Ocean, tumbled in, and when he surfaced, let out the tiniest whimper and continued on, lunging about in the waves.

Wally did not respond to his name for the longest time. He has only started to, at nearly 2 1/2 years old. That combined with speech delay and something else, something just off, hard to put a finger on, led my sister to suggest that we get his hearing checked last November. His hearing was fine. He was steamrolled along to all kinds of different evaluations and scored poorly enough to be accepted in New York State's Early Intervention program.

I've been trying on this blog to get to the story about this sensory integration disorder or hyperactivity or "He's just a boy, that's how boys are" stuff, but every time I start to do it, I get tripped up in all the different pieces. There are so many off-shoots. One is the whole out of breath feeling that we had keeping up with him and not knowing what was going on, and the huge relief when all these trained professionals said, "He cannot attend for even one second. I can't even test him on anything to see if he's delayed." Another is the frustration I had with people who, having seen him for all of 2 hours on his best day after a great nap, said, "It's totally normal. Boys are just more active." Another is the fact that he remains a puzzle. And part of it is that when you begin with a physical aptitude that so far exceeded age appropriate development (something we know for sure he did not get from my side) and combine it with significantly delayed speech you're already going to get something a bit experimental. So to me that always seemed like part of the story too. Like even if you took away the neurological piece (or missing piece), you'd have something unusual. And I guess part of it is the fear of people not believing me, about the stuff above, or about sensory integration disorder being a real thing, (one of the therapists that we have would fall in that category). So I guess this sort of preemptive defensiveness creeps up.

As we were laying out the plan for service, one of the Early Intervention Officials said if the world were safe, Wally would be fine. We wouldn't be having this conversation. That stuck with me.

If the world were safe, he'd be fine. He could just go on exploring, being a scientist, keep trying to figure out every light switch and drain pipe and rock formation and body of water. Keep pushing boundaries. Running instead of walking. Charging straight into the ocean. He could disregard our warnings and follow that siren call luring him ever further away from the safe and familiar. Once you have kids, the world seems so much less safe than it used to. One look at the babyproofing section of Babies 'R' Us makes that obvious. We've chosen this unsafe world. To eventually let them loose into it. To live in it ourselves now, crossing our fingers, making secret bargains with some greater power we don't really believe in. As soon as you have a baby, one who insists on trial by fire or one who prefers to be held even on the playground, the world is just so full of potential danger. Sometimes it seems funny to actually choose that. Makes me think of Midnight Train to Georgia -- "I'd rather live in his world, than live without him in mine."


  1. Rachel, thank you for blogging. I had no idea what you were up against but now am getting a really good sense of your life through your posts. They are great. Not to trivialize anything, but the first part of this post about preternatural strength made me think of superheroes or Twilight! Anyway, glad to hear Wally is now sleeping through the night--I hope he keeps it up.

  2. WOW - what an incredible journey you all are on. I'm glad you're finding some answers with SPD but, it's not an easy process, is it? And, sometimes there are overlapping issues. I think that's my daughter's case but honestly, we don't have the money to spend on more tests that aren't covered by insurance. (I'm wondering about ADD and / or Aspergers) Hang in there and know that you are not alone in this!


Post a Comment

Popular Posts