As parents of kids with special needs, there’s something we desire most of all for them, particularly as they get older. We want them to have independence. We dream of them walking freely in the world, making their own choices and taking agency over their lives. The complicated truth, however, is that releasing our kids out into the world like that is a lot like sending astronauts on a long space voyage. In the end, a bunch of men and women with big smiles and pretty mission patches on their spacesuits are celebrated for their accomplishments, and rightly so, but standing behind them is a team that was responsible for providing their training, assuring their safety and monitoring their progress at every stage. Without that team, those astronauts wouldn’t have gotten off the ground.
Much like the team at Mission Control, special needs parents are proud but spent by our efforts. Unlike NASA, however, our kid’s mission hopefully doesn’t ever end. Well, you know, not until our own mission ends, which we don’t want to talk about, thank you.
I was thinking about this over the weekend, when Schuyler’s particular mission wasn’t to Mars but rather to Six Flags, on a trip with her high school band. These events are crucial to Schuyler, given that they represent almost all of her significant interaction with her neurotypical classmates. We encourage her to go on these excursions because they provide large steps towards true independence for her.
But we also volunteer as chaperones for all these trips, because Schuyler’s reality where social interactions are concerned is still one where she tries really hard, but she sometimes fails really hard, too. Schuyler powers through her social anxieties like no one I’ve ever met. She takes huge risks, but when they don’t work out, she takes it very, very hard.
So we’re there, but we’re not TOO there, if that makes any sense. The older she gets, the more in the background we try to stay. This weekend, she started off strong; we didn’t see her at all for several hours. As soon as she got off the bus, she was gone until lunchtime with a group of friends. I can’t even begin to tell you how great that felt.
Without telling too much of Schuyler’s stories, which are hers to tell, I’ll simply say that the whole day didn’t go entirely smoothly. Schuyler had stumbles. She didn’t click with all the friends she tried to hang out with, and a few of the inevitable snubs she got in return left a mark that she’s still nursing back to health today. She required a lot of redirection and confidence building at regular intervals, and we were on hand for just that purpose. In the end, I’d say Schuyler probably had a 60/40 ratio of good day to hard day. And that’s not terrible.
There’s something special needs parents might not tell you, although if you love us, you probably already know. We’re exhausted, physically and emotionally, by the hard days, by the times when things fall apart and when our kids reach for the stars and fall to earth with a crash. But the good days, the ones where the successes outnumber the failures and there are more smiles than tears? Those days are exhausting as well. Even the successful days take a toll on us and require us to dig deeper wells than we might always be able to sustain.
And that’s fine. That’s more than fine, actually. I don’t want to come across like some kind of martyr, because working in Mission Control pays really well, in the currency that matters the most. Every so often, after we’ve all worked pretty hard and stayed the course, our kids make it. They leave dusty footprints on some world they’ve never visited before, and we sigh in relief. Maybe wipe away some tears.
And then we get back to work.
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