There is a feeling you get when you’re dreaming. You know. You are somewhere doing something and you have to get somewhere else, but you can’t. The phone is ringing and you can’t get to it. Or you’re trapped. You just cannot accomplish the thing you need to do. You have no control. You’re helpless.
Sometimes, I feel like I’m living inside that “dream”.
Every day, with my son, I am – for want of any better term – the coach. I want to make just a bit of progress pushing the boulder just the tiniest millimeter forward so we can see more of the path in front of us. When I turn around, it’s rolled right back where we started.
I try to brush that bottom tooth a little longer. I hope he can hold a towel to dry the backs of his hands. I wish he could dress himself in less than a half hour. I hope he will swallow that bite of applesauce without gagging.
None of that ever happens on a consistent basis. Sometimes, we can get through that last bite of applesauce. None of the rest of it, really, happens at all.
When we arrive to his school, he will take off his coat, but he’s just as content to let it fall to the floor as hang it on his designated hook. He cannot hang up his backpack, take out his water bottle and his folder, and sit at his table without multiple (and I do mean multiple) prompts. Instead, he will look at the ceiling, softly talking to himself.
Sit him down and he can read an encyclopedia. He can recite math equations above his grade level. He can answer the teacher’s questions if she can get his attention.
He cannot do simple tasks of daily living.
I’m frustrated. I’ve done the medical stuff. We work the ABA programs. We do the basic tasks of daily living – bath, wash hands, use toilet, dress, undress, eat, brush teeth and hair – every day, a number of times per day – not just for real, but as programs to structured to teach. But he still cannot brush his teeth, comb his hair or eat on his own. He cannot hang up his stuff at school before he sits down to learn.
Right now, if left to his own devices, he’ll drop whatever food he is eating on the floor to run and play with a toy or stare at a light, even if he’s starving. If a food item is in its “whole” state, (burger, pop-tart, banana) he will not touch it until someone else cuts it up into bite size pieces. If the piece is the wrong size, he walks. He may end up eating Lunchable Nachos for life.
I can’t even be sure he will use the bathroom without me taking him there. For some reason, he’s now trying to “hold” back and when I ask him if he needs to use the toilet he always says no. When I take him there anyway, he only relieves himself with “coaching”.
He is not afraid of the toilet or the bathroom. Even if he is just standing around, doing absolutely nothing, he will not go when he need to. He will deny it. Once on the throne, he crosses his legs, squirms and holds, until I talk him through it. We cheer when it’s completed. He expresses relief. Then, he repeats the same thing the next day.
And so, despite all the help everyone provides daily, I’m still left with that feeling of helplessness. Nothing I do, prompt, reward, or take away makes even the slightest impact toward basic independence. Yes, I know he’s only five. All of his classmates can do all these basic things. They could do them before they were five. And yes, I know I’m not supposed to compare my kid but that’s just my own human nature.
I stand back and watch him zone out while the world gets on with the business of every day. I can’t reach him. In my heart, I hope this is just one of many stages. Yet, as a parent, I still have that fear inside that maybe he will not be able to do these things for himself someday.
And maybe, it’s unfounded, but sometimes, I still feel helpless.