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tollRecently, I had the opportunity to be a part of a conversation with some parent advocates and a speech language therapist. I’m not going to go into a lot of detail about it, except to say that it went off the rails almost immediately. The SLP was pretty committed to two ideas: 1) in the vast majority of cases, a dedicated speech device is a better choice for nonverbal kids than a consumer electronics tablet solution like an iPad, and 2) parents are entirely unqualified to make assistive technology decisions for their kids. No amount of discussion could sway her from this opinion. At one point, someone pointed out my daughter’s success with her iPad and the struggle she had to be taken seriously by professionals from the very beginning, and the SLP responded “Well, there’s two sides to every story.” I didn’t have an appropriate response that didn’t consist of two specific words (SPOILER: not “Happy birthday”), so I just sat it out with minimal attitude.

I think we all walked away from that encounter relatively unscathed. Those attitudes persist in little pockets out there in the professional lanscape, like the last few shuffling dinosaurs after the comet. So while I’ve obviously got some lingering feelings about the whole thing, that’s not what I want to talk about.

The thing that I noticed in the discussion was how we all just kind of let it roll over us. A few years ago, I would have fiercely taken up that particular gauntlet. The other parents in the discussion weren’t new to the game, even though there was a lot of variation in the AAC experiences everyone had been through. If there was one universal between us all, it might have been this sense that we’d all been there before, and that the past had taken a toll.

Being a special needs parent is an amazing experience, but it runs a deficit. The obstacles that society throws up. The constant struggle to be taken seriously by professionals and educators and family and, well, the world. The ticking clock that runs out way too quickly on the protective cushion our kid’s childhood provides until it very much doesn’t. The isolation. The pain and anxiety our children feel and our frustrating inability to explain or make right the things that impair their young lives. They learn to find their way, and we are central to that discovery. But it takes its toll.

Occasionally I’m told how fortunate we are that Schuyler functions so well, how she’s becoming strong and independent and has at least a fighting chance of a successful adult life on her own terms. That is undeniably true. But I’m not sure how fortunate it is. I’d call it luck if that’s just how she turned out, like a swan emerging miraculously from an ugly duckling start.

But Schuyler is who she is, in good ways and admittedly a few that are less brag-worthy, because of the upbringing she had. She went from a charming but wild and unintelligible child to the mostly formed young adult she is now because we pushed her hard and lurked over her ceaselessly and sometimes even bullied her, particularly where her assistive technology was concerned. We got some stuff wrong, too, but for the most part, we did okay. For better and for the occasional worse (she’s begun swearing, which is clearly not going to end well at school but was probably inevitable), Schuyler is the girl we built. She has an amazing spirit, and we guided that spirit, sometimes less than gently.

Being that parent meant showing up for everything, enduring the little comments from other parents, behaving less like fussy helicopter parents and more like relentless drone pilots, and honestly saying “no” a lot when Schuyler wanted to quit things that she probably should have been allowed to quit. I don’t know if we got it mostly right. But I do know that without that kind of pressure, Schuyler would be a lot less prepared for the world that awaits her when she’s not so little and cute anymore. Even with all my many screw ups, I’m mostly at peace with that approach.

But being that person takes a toll on a person, and I keep seeing other special needs parents, maybe most of them, for whom all the little bites are beginning to add up. New parents feel so much fear and uncertainty, and those emotions don’t really go away. But after a while, the anxiety and the exhaustion become their own comfortable monsters. We hate them, but we know them. And when someone shows up to impart unto us the Great Big How-Things-Are, we nod, because it’s easier to nod, and then we move on. There’s a phrase I’ve heard probably a hundred times from special needs parents over the years, one that we all know but sometimes have a hard time expressing, or honestly being allowed to express without being handed an inspirational poster or a Holland poem.

“This shit is hard.”

We’ve paid the toll, and it’s not insignificant. The part of that which is perhaps harder to see from the outside, however, is the grudging satisfaction that sometimes comes from all the work. If you’re not a special needs parent, I wish you could know, if only for a moment, how sweet the small victories can be.

If you envy me as a father because of my life with Schuyler, now, when things are a little easier with her, I get that. Honestly? You totally should. But the thing is, you probably should have envied me ten or twelve years ago, too, back when things were hard and scary and wildly uncertain. If all you see is the sizable toll it takes on parents like me, you’re missing the grand experience that toll pays for. It’s not cheap, but it’s not a ripoff, either.

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  1. KT
    September 14, 2016 |
  2. Jim Rossow
    September 14, 2016 |