Disappointments

This week I am feeling sad. Completely defeated.

It’s not by the kids, which don’t get me wrong, they can kick the shit out of me.

It’s the disappointment of how the kids are fitting into the world as they grow. Which is, to be clear, not really the fault of anybody but how society as a whole works. Although it’s going to sound like I’m complaining about school, it’s school as a general rule, not any staff in particular.

Yesterday, Rory came home with a hat and jacket on that were not his. I get it. The school explained that they made an assumption because it was near his hook, it wasn’t labeled, and there had been a switch in student assistants. Initially it just grossed me out (because, ew, lice and Covid) but it also made me really sad. Rory can’t say, “Hey, none of this is mine”. He (and I) have to count on other people to do that for him.

I’m usually that person, but I can’t be with him 24/7.

Penny’s schoolwork this week just has notes on it that says, “she doesn’t understand…” fill in the blank. Literally, there was one book of homework yesterday with 9 pages of notes with “she doesn’t understand…” written on every single page. Again, I get it. She doesn’t communicate verbally all the time. She shuts down. She very well might not understand, but how do I know how many ways they tried to gauge her comprehension? One said, “she could not form her own conclusions”. I suppose she couldn’t – we’re still working on her answering WH questions. If she could formulate a sentence herself, that in itself would be an accomplishment like no other.

And that is disappointing, because as they age and as their “invisible disability” is not so invisible, life just seems to get harder to navigate.

I can advocate for them, I can try to set them up for success, but there’s only so much I can do when I’m not with them.

I’m just struggling I guess. And I don’t know if the kids are struggling, honestly.

The kids are so happy and content at home, and then they go out into the world and we have messages about them running away or being disregulated or stealing someone’s cheesie (which, I’m still laughing at because that feels much more like tattling than anything constructive). I don’t doubt that they do all of those things. I know they’re not saints, and I personally have a hard time taking them in public by myself. But is there not anything positive happening at the same time?

A call mentioning about Rory trying to leave the classroom after a month of not? Like, holy shit, that’s huge. I know it’s not great he tried to leave, but for 5 whole weeks he didn’t. Shouldn’t that be celebrated? I can’t be the only person who sees the win in that? He’s gotten out at home like twice this week already – 5 weeks of no escaping sounds like a dream.

I wish I could be a fly on the wall. Because anyone who interacts with the kids obviously know them and generally want the best for them, but they don’t know them like I do. They don’t pick up on the subtleties like I do. Even on the phone with Shamus I’ll say, “I think Rory is looking for…” or “I think Penny is asking for…” just by hearing them in the background.

Why do I not have the option to bubble wrap them and keep them home with me forever? If we could build an impenetrable fortress in place of our home, I’d be all over it. Like, I know I have the option of homeschooling or the like, but I mean full-fledge *we do not interact outside of the house and we protect them from everyone and everything and every unfair social norm that exists*. Is that too much to ask? Is this not an option? It feels like it should be an option.

This is more of a rant than anything because I really don’t have a solution.

Well, except the fortress idea. The jury is still out on that one.