Personality vs. Disability

Atti learning to walk
Atti in his little red walker. If it wasn’t rented I’d paint flames on the side.

Sunday’s are getting harder and harder around here. Atticus is now old enough to go into the children’s nursery and play with all the kids at church 18 months to 3 years old. Bear and I take turns staying in there with him because there are never enough people to go around, and with a roomful of wiggly bodies and wooden blocks, Atti requires full time attention.

The first few times we’ve taken him went fairly smoothly. He doesn’t exactly play with the other kids. He barely even seems to register that there are twenty other kids in the room. He’s just been busy scoping out the new environment and laying on his back while he entertains himself by staring at his hands moving in front of his face like he’s on an acid trip. Now that he’s a little more familiar, he’s starting to engage more and getting really pissed off to discover all the cool tricks the other kids can do that he can’t.

Yesterday he threw a screaming hissy fit until I held him up on his feet in a standing position. But since he can’t stand on his own, it meant I had to hold this 20 pound kid aloft for an hour.

When my arms finally gave out and I couldn’t hold him suspended any longer, he stretched out on his belly and threw a full body, back arching, screaming, head banging on the floor, tantrum. I just tried to not burst out in sobs as I caught his head before he smashed it in the carpet.

Interacting with typically developing kids is good for Atti. It’s good for him to get pissed off when he can’t do something he wants to do. It’s good for him to see these behaviors modeled so he’ll work towards them himself. But holy crap is it depressing for me. Just the ease with which these kids go from sitting to laying down, or the way they can manipulate a toy with both hands, the way they interact with each other and the leaders, it’s pretty hard to deny how much work is ahead of my guy.

When my turn was up and Bear took over baby duties, I had to run to the bathroom to have myself a little cry and wash up before I went to teach my teenage girls. I splashed some water on my face, touched up the runny mascara, and went off to class where I sat by my friend EmaLee who is the mom of the most adorable little red headed two year old. I told her how hard the last hour was for Atti and she said, “Oh my gosh, that was us during Sacrament meeting! Did you hear Erek screaming? Last week it was so bad I had to go into the bathroom to have a little cry!”

Atticus is now 19 months old, which would make him 16 months old adjusted age. Although we are rapidly approaching that 2 year birthday when they stop adjusting his age, hoping that any prematurity delay will have worked itself out by then. He has such a strong little personality, just as I expected from day one, and it’s hard to know what he can’t do vs. what he can but won’t do. He’s always been a reserved baby, stingy with his smiles, taking his time warming up to people but especially new surroundings. Maybe what looks like a delay next to another kid is just his little personality. Maybe instead of the tantrums being a result of frustration born out of his disability, it’s typical toddler frustrated at the world behavior.

I just wish I had any kind of an answer, about anything at all really. One of the other moms on the panel I did last month told me that a diagnosis of Cerebral Palsy is like a diagnosis of bleeding. It could mean anything from a gaping wound to a papercut, and there’s no way of knowing which you’re looking at. I would really love to know what Atti’s ultimate abilities are going to be. Maybe then I could relax and just accept what he’ll be able to achieve. But knowing me, I’d just be even more impatient for him to get there.