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Here Be Dragons

mapIn popular myth, mapmakers of antiquity would fill in the regions at the edge of the known world with fanciful monstrous artwork and the warning that “Hic sunt dracones” (“Here be dragons”). The reality may have been more complicated (ancient maps were just as likely to warn of real-world creatures like elephants, hippos and cannibals, oh my!), but the message was the same, and remains so today for those of us who fear to send our own little explorers into an unknown and often unknowable world: “There are places in the world you cannot see, and you can only imagine how dangerous they might be.”

That’s the case with all parents, I know. Last night, we saw a movie on the RedBox called Prisoners and said, “Hey, I heard that was pretty good” and rented it. It was actually a very good film, but the plot is built around the abduction of two little girls. I suspect every parent who watched that movie had the same visceral reaction to the scenes where the family comes to the slow realization that their daughters aren’t just hiding or even lost, but rather have been taken. Just writing about it makes my stomach twist a little.

For the parents of special needs kids who have developmental and communication impediments to independently moving through the world or reporting the troubling things that happen to them, the map of our world is crowded with monsters and terrors and fears. We’d gladly take on all the dragons and the krakens of the ancient world instead.

Let’s take a look.

Here be predators. They might look like strangers, but probably not. They probably look more like neighbors and family and teachers and preachers. If you’re lucky, they got caught at some point in the past and now have a record and rules about being around kids and a cute picture on a sex offenders’ website. But you’re probably not that lucky. The statistics for women with disabilities in particular are bad. They are very, very bad. You probably don’t want to know how bad.

Here be the internet, in all its anonymous, hateful and trollish glory. Our kids don’t even have to leave home to find dragons, and neither do we.  It’s here that you can find robust discussions of how the word “retard” is a French word for slowing down and free speech is more important than humanity, and jokes are funniest when directed at those less able to defend themselves.  You’ll find earnest discussions of how much money is wasted on educating those with developmental disabilities instead of the gifted and talented, how unfair it is that people in wheelchairs expect to just go where they want no matter how much it costs, and why should my tax dollars go towards helping people who’ll probably never pay taxes anyway? You’ll find memes with the faces of kids like yours. All anonymous. All for you.

Across dark seas, there be policy decisions, often made without even a shred of concern about your kids. You’ll find politicians unwilling to support so-called “entitlements” for luxuries such as community supports for special needs families. You’ll find school boards stealing money from special education because honestly, have you seen the football stadium lately? Those seats always hurt my ass before we even get to halftime. You’ll find IEP committees who barely make the effort to even pretend you’re a valuable part of their team.

Here there be dangerous pitfalls, the ones that most parents never have to worry about. In October, 14-year-old Avonte Oquendo, autistic and non-verbal, walked out of a New York City school that was supposed to take care of him. The final DNA results haven’t been released yet, but it appears that his remains may have been found in the East River. It is one of the most heartbreaking stories of recent months, although don’t get too attached to your grief, because another child, lost, misplaced or neglected, is certain to make the news soon enough.  And when they do, the same parents will ask how it could happen, the same voices will declare that autonomy is more important than safety, the same cops will form their impenetrable blue line, and the same schools will decry their lack of resources to protect our kids, which will be all the more frustrating because it’s probably true.

Here there be family and friends and coworkers and neighbors. Some will try to understand, and some will actually do so. But many won’t, and it’ll be up to you to educate them and try to fire a spark of empathy that might or might not ever catch. This section of the map looks a little sparse, because it’s the loneliest part of all.

Follow the edge of our world from that place of solitude just a little, and you’ll come to the region where there probably aren’t any dragons because there’s nothing much at all. Here be a desert, one devoid of societal supports or empathy. This is the place where parents feel hostility or absolute isolation, which might be worse, where they inexplicably lose hope and end up in the paper, one more cautionary tale to titillate the scolds and deflate those in similar places.  It’s the one you fear the most, where you grow old and die and your special needs child is left behind without your love and guidance and protection. As a parent, you don’t have a clue what they’ll find in this part of the map, much less any of the others. Maybe they’ll find success, perhaps self-sufficiency and autonomy. Maybe sadness and loneliness and institutional life. Who knows?

When you see that look in the eyes of even the most upbeat special needs parents, you’ll understand what it means. You’ll know that they’ve seen the map, and it has brought them neither wisdom or comfort. It’s a map etched in our worst fears, the ones rooted in the unknown future.

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  1. January 20, 2014 |
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    January 20, 2014 |
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