Raising independent kids in spite of their special needs. I feel like I spend a lot of time talking about this with other people, and then even more writing about it here.
I spent the other morning taking care of medical stuff. We need to get the Boy Scout Form C filled out for M for camp. While we were there I had to pick up the 504 information that E’s rheumatologist was supposed to send over. But there was nothing. We did get her official diagnosis papers, which I guess is something, but not the something I was expecting. So we went home and I started to write up some 504 requests in lieu of said paper, seeing as we have everything but. I am researching specifically Ehlers-Danlos Syndrome and 504 and some of what popped up is terrifying. Like, major accommodations terrifying. E isn’t super bad off right now… but I expect her to do all this shit, within reason, regardless. And I always felt the same about M as well. I joke and say at least the oldest doesn’t need an IEP or a 504, but he has his own set of needs. And en EP, because apparently every education needs a plan.
Back to M. I often approached things like “I want M to do [this thing], but I want you to know he is dx ASD; that shouldn’t matter, but I am telling you just in case it does matter. I expect him to do [this thing] like everyone else” and you know what? Most of the time he does, or does his best and I wind up with whoever is in charge thinking I am crazy. I am OK with that. Every support specialist is always like “OMG, he does so much, he is so independent!” and I’m like, “because I raised him that way motherfucker!” Minus the text-speak and swearing and pretending I am Samuel L Jackson. Out loud.
But that is my foundation. My kids can do anything. It’s ingrained. My mother always told me I could do anything I wanted to do and I believed her. I believed her with every bit of me that is me, and that’s just how it is. I am pretty sure I hardcoded that into my DNA and passed it genetically into my kids. My sister will just tell you I expect too much, but I think expecting too much makes kids rise to the challenge. Raising kids who know how to rise to the challenge means you are raising tiny adults who can as well. It means raising tiny adults who can set their own challenges, break their own limits. It means having adults who can function, on their own, in the real world. I’m not talking about celebrating every victory with a participation award. I abhor participation awards. I’m not talking about celebrating mediocrity or having winners out to tenth place. I’m talking about knowing what your goal is and knowing how to get there, whether your goal is finally buttoning your pants after being in elastic waisted pants for ten years or starting your own company and having it be wildly successful or working your way from the “mailroom to the CEO” or whatever your goal is. I’m talking about independence.
Which is kind of the stance I am taking with E. I know how much I can’t do now, I know some days getting out of bed and getting dressed is it for the day. I know other days I am on top of the world and I do Every Thing only to find myself holding up the world the next day. I want her to push through so that doesn’t happen to her. So with the exception of a handful of things, I’m like, get to it! I’ve sent her back into dance for the past few weeks telling her she can soak and ice after. And she does, and she is fine. My Epsom salts are taking a hit, and my foot water soaker-massager thing is now permanently out in the bathroom, but she is learning how to help fix her body after she’s pushed it into doing what she wants it to do. She asked me last week if I had registered her for next year yet, and I said I didn’t know if she wanted to dance, and she said of course! I said, but all you do right now is complain it hurts, and she looked at me and said “but it’s worth it!” and that made my day.
So while I am happy to ask for time and a half and pencil grips and comfy chairs and adaptive PE, I expect her to do her shit. I expect her to do it well and with grace and aplomb. I expect her to grow up to be amazing and not let “special needs” get in her way.
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