The Isolation

I know we’re all feeling isolated these days, but I got to thinking recently about the isolation that many special needs parents feel.

It started with a conversation with a person I don’t know very well about travel. This person knew that I hate to fly and that I will not fly over water. I was forced to once against my will and I am not doing it again.

But we were talking about visiting Europe and that it is something I would like to do, but it’s basically off limits because I won’t fly there. She said I could just take a cruise there.

And then we hit the weird part of the conversation. Weird for me, not her.

Because, yeah, we could. But Teddy can’t. So I thought about saying that it’s on the list for when the kids are all grown up. Which it kind of is.

But the truth is that to be gone for that length of time (I think it’s 2 weeks one way on the boat) will be hard forever. Because Teddy’s not likely to be able to move out on his own. He’ll always be with us. So to be gone for 6 weeks, I’d have to find someone who will take him for 6 weeks. And that’s a long time. That 6 weeks includes getting prescription refills. Making and accepting supply orders. Performing 6 subq infusions. 336 times of reminding him to pee unless he’s started being able to wear a watch and actually peeing when it buzzes vs ignoring it. For the love of all things holy I hope it doesn’t still include 6 weeks of butt wiping, but it might. *shrug* Doctor’s appointments. Taking care of the things that come up – and they always come up. 6 weeks of being really really far away.

So then I’m at the place where I don’t know how to respond. I can be truthful. I can explain all of that. (and then likely also have to explain a ton more and answer a whole bunch of “can’t you just” questions.)  Or I can just smile and nod and say “yeah” because frankly this person is never going to follow up in ten years and ask about the cruise to Europe and this conversation isn’t a big deal in the grand scheme of things.

So I just said yeah.

But I feel like when special needs parents talk about feeling isolated, most people picture not being able to go out and be around other people as easily as others. Being left out because friend groups stop thinking about inviting you. And that’s a part of it, sure.

But this is the real isolation. Being alone even with other people. Because you can’t have really honest conversations, and because you don’t have as much in common with others.

Because when your friends are talking about soccer and rock climbing, all you can contribute is what your same-age kid is working on at OT.

Because when people suggest a cruise, explaining that that isn’t an option takes too much energy and requires you to share too much of your personal information so you just lie and say ok.

Because when your family’s talking about their kids’ favorite foods, you have nothing to contribute.

Because when you swing by the hospital library and they learn your kid is going to be in third grade (after you showed him three fingers, but he said 2 because your thumb obviously isn’t a finger, mom), they offer to get you a times table and you say I don’t think we need one, but thanks, and they respond with “oh, isn’t third grade usually when you start working on multiplication?” And then what do you say? Seriously. What do you say? You’re standing there with your kid and there’s another parent nearby and you’re having a pretty loud conversation considering the small space and now what? “yeah, probably, but he’s still working on cementing the concept of the tens place, so I think we’re a ways off from multiplication, can’t you just freaking drop it?” Of course not. No, you’re going to say something like “oh, we’ve already got a nice chart.” (which is also true, but also irrelevant, because you know darn well you’re not going to be pulling out that chart this year.)

THAT is what I mean when I say that being a special needs parent is isolating.

Yeah, it makes it harder to get out. It makes it harder to WANT to get out. But it also makes you feel alone even with other people.