Cohen's sensory needs have been subtle to the outside world. When he is in a different environment, it's enough new stimulation for him to get what he needs and he is able to hold still, play, and even be fairly calm most times.
At home, it's different. He's not naughty. He's busy, wild, almost frantic at times. His need for sensory input and stimulation is higher. He gets so wound up that he becomes increasingly clumsy, "needy" (he yells "see mom", "see dad" and NEEDS to be like right.on.top of us even when we are right there with him), and anxious.
When I think about it, it makes total sense. The nervous system doesn't finish developing until late in pregnancy and Cohen didn't get that chance. Not only did his system not get a chance to fully develop, he was put into an environment, even though the NICU did the best they could, that was far from womb like. He had a tube down his throat, lights, noises and lots of frequent activity. When Cohen was tiny, we weren't allowed to rub or stroke him or do any gentle touching for this reason. The only way we were allowed to touch and hold him was by cupping his tiny body between our hands, one on his head and one on his feet and giving him that "closed in" feeling. His brain didn't know how to process it then, and still doesn't know how to process it now.
He's not naughty, he's not doing it on purpose, his little body just doesn't know how to handle everything that's thrown at him and he just is like a top spinning out of control. There are days where he literally does not stop moving. Where you can see his little body almost shaking. His mind is ahead of his body and he can't physically keep up with what he wants to do and that doesn't help either. He gets anxious and almost frantic. When he gets like this, he can't play independently, he can't calm himself down, and often times we can't either.
It's so frustrating to not be able to help your child. We don't know what's going to cause him to get to that phase. We don't know how to stop him from getting there. Danny and I often send each other text messages that are either "Cohen is being really strangely calm today" or "Cohen is impossible". And again, NOT that he's being naughty but that it's just one of those days where you can't find the right book, you can't pick the right food, you can't give enough attention even though you are giving all your attention. And it's tiring. And it makes me feel horribly guilty for running out of patience and wanting a break.
But finally, someone other than Danny and I saw it. Sure, other people get glimpses from time to time, but today, someone really saw how we live 80% of our days. I'm glad that someone finally sees and understands, but I'm also sad and frustrated that Cohen has to spend his days like this. I don't want him to be anxious and feel out of control. It stresses me out just watching him run around and fall and not be able to focus on anything, I can only imagine what it feels like to him and I can't fix it. A hard day, but glad to be validated.