On being on the outside

by arianne

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He insists on sitting by me but he won’t hold my hand. He won’t really touch me. But he will scream if I move too far away. He can’t tolerate a single change in routine or plans or rules or promises. He acts like his whole world exploded when he feels left out, and he often says no one likes him. He calls himself stupid when he has a consequence for his poor behavior, and I try and scoop him up to tell him those are lies, that I love him and sometimes we all make mistakes, but he won’t let me scoop him up. He holds me on the outside of his heart. Always.

He battles getting dressed, and most days I pick my battles and then it’s another underroos kinda day. But each day that goes by with yet another battle over a shirt I just have to wonder if things are really worse than they seem.

When I can get him to look me in the eye, for just a moment is how long it normally lasts, I realize he isn’t exactly there. I miss him. The real him is locked inside there somewhere. He has had long seasons of being “here” and I know what those felt like. They haunt me a bit today. The piece of him I know is possible.

We’re having a battle right now, weathering this storm that is 5.5 years old and on the spectrum and yet high functioning enough to not require professional help. It’s like hey, yeah this is what is going on with your child, but there are much worse kids so yeah – you’re on your own! Good luck and God speed, because you’re going to need it.

I think the only time he will sit and have a conversation with me lately is if I play video games with him. I limit him with those, big time, so the actual conversations are few and far between. We’re back to feeling like we can’t take him in public (though we must) and we’re back to being really worried.

I feel like I want to share this and then at the same time I don’t want to voice any of it. We thought he was getting so much better, and he was for a time, but now it’s regression again. And it hurts.

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