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In defense of the Kraken

krakenLike many special needs parents, I’ve been watching the new ABC series Speechless closely. The new sitcom tells the story of a family trying to navigate the world, particularly the educational system, with a young, nonverbal teenager with cerebral palsy. I’ll probably wait to see a few more episodes before I write anything comprehensive about it, but for now, I’m in. The humor is sharp, the characters feel representative of their real-world counterparts (ie. us), and the cloying sentimentality that is usually a part of disability stories in popular culture is pretty much absent. If you’re not watching it, you probably should be. Even if you end up hating it, you’ll have plenty to think about.

I’ve been watching the opinions unfold on social media, and I’m discovering a curious thing. The discussions I’ve found on speech language professionals’ sites have been decidedly mixed, and two points that come up again and again from a number of educators and therapists can be summed up as a) the take-no-prisoners parents on the show (the mom in particular) aren’t very realistic, and b) that aggressive, don’t-stand-down, “blood on the IEP paperwork” brand of advocacy is neither necessary nor effective. If you read reactions on parent advocate sites, however, you’ll see a very different consensus developing. That could be us, you read. We’ve had to be those parents before.

Around here, we refer to that occasionally necessary approach as “releasing the Kraken”.

Our first Kraken-wrangling experience is one I documented pretty thoroughly in my book, originating in the basic question of presuming competency where Schuyler’s communication needs were concerned. It’s been a while since we’ve gone there. I guess the last time was a couple of years ago, when we had to take on her past band director who had no desire to make accommodations for her. We’re probably about to go there again soon, this time with a parent volunteer in band with whom we’ve had polite conversations that have gone nowhere. So now we step things up. The Kraken is less polite. It’s an occupational hazard for metaphorical sea monsters, I’m afraid.

I think the thing that professionals don’t always understand is how special needs parents become so hardened over the years, or why we can be so unrelenting, even to the point of harshness. The mother in Speechless stays in fight mode most of the time, but she probably didn’t start out that way. I don’t think most of us do. We begin in a place of vulnerability, filled with self-doubt and desperate for expert guidance. I’m sure some of us never move beyond that, other than to become more self-assured, because the supports are there and things go the way they’re supposed to go. That sounds great. I’m serious, it really does. To me, and I suspect to most special needs parents, that sounds extraordinary. In my imagination, there’s a pony and free helicopter rides for everyone, too. It just feels that far from reality.

What the rest of us are left with is a world where professionals sometimes lowball our children, where their impairments are misunderstood and their abilities are woefully underestimated. And we learn certain lessons as we go, almost always as the result of trusting in a system or an expert who ultimately fails our kids. Because the first time that happens, we feel, perhaps accurately, that we’ve failed our kids, too. We weren’t vigilant. We didn’t understand what we were signing up for. We didn’t know the rights we had as parents, most of all the right to demand better. We make early mistakes because we’re uncertain or we’re complacent or maybe we’ve just not quite gotten a handle on the situation yet. But when we see our early failures, we say something to ourselves, something we never forget, something we mean more sincerely than perhaps anything we’ve ever said before.

“Never again. I’ll never let you down like that again.”

Of course, we do. We make mistakes, just like the mother in Speechless makes mistakes, kind of a lot of them. But like this fictional character that rings so true, we don’t make the mistake of complacency again. We don’t allow the system to step on our advocacy or to rob our children of their rights. We might not win, but we’ll be damned if we lose because we don’t fight hard enough.

We don’t do so without reason. We don’t summon that inner leviathan without cause if we’re smart, because here’s the thing about the Kraken. He doesn’t just get his way. He breaks things. He bruises relationships with people who most likely care about our kids and who remain in their lives. He breaks our reputations, he plants little red flags in our parent files and in the quiet conversations that take place in teachers’ lounges. He hardens us every time he is called up, he cracks our social skills and dents our optimism and our faith in our fellow human beings. We don’t call upon the Kraken lightly, because we know his power and the wreckage he leaves behind.

We release the Kraken because we need that kind of strength, and in the moment when an inadequate system or a team member with the authority to short-change our kids stands in the way, parent strength isn’t enough. We need to imagine the great beast rising from the choppy waves, all roars and tentacles and menace. We need to be heard, we need to be seen, because our kids need to be heard and seen, and helped.

If we ask politely, some of us have learned, we are sometimes politely refused, not just when we’re asking for too much (which we do sometimes), but when we’re asking for something inconvenient but necessary. We get refused because we’ve challenged someone’s reputation and their expertise. We’ve banked instead on our real world experience with our child and our investment in their future, one in which we’re never gone (until we’re, well, you know, GONE). That’s a future in which the mistakes made now will reverberate for the rest of our kids’ lives, perhaps like some of our earlier errors still do. We challenge the system and the professionals because the stakes are so high.

We understand how difficult and embarrassing that can be. We do. We just can’t let that drive us. The father in Speechless explains it to his other son, the younger brother who doesn’t have a disability and who is struggling with the unusual and difficult life the entire family must lead.

“All this stuff? Other people’s opinions? It’s *nothing*. You know what’s not nothing? When a doctor tells you there’s something wrong with your kid. All the things he’s never gonna do. And it’s a nice long list. But look at your brother. He’s great. He’s smart, funny. And, without naming names, he’s apparently cooler than some of my other kids. So now when something happens, it’s like, ‘What else you got? Bring it on’. I get it. Normal seems good. But guess what? We’re not normal. We’re better, we’re… bulletproof.”

Thus comes the Kraken. Please just understand that we much prefer smooth seas. We fight because we believe the waters will be calm one day.

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One Comment
  1. Jim Rossow
    October 12, 2016 | Reply

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