Sunday, April 26, 2009

Holland?! As if it were a vacation...

Oftentimes when I meet people and we get around to The Subject--  you know, I have a special needs kid... blah blah blah-- people try to think of things to say that are supportive, helpful, even politically correct. And as we get to know each other some of them will begin to send me things, like the essay Welcome to Holland by Emily Perl Kingsley.

Now, I everyone is entitled to their opinion, and every family's experience of raising a child with special needs will be different, but I have to say, a friend and I spent a good evening just busting a gut laughing about how far off the mark this essay is from our own experience. Like, we've seen pictures of Holland, and it does not seem so bad! Why you cappin' on the Dutch? What did they do to you? If you haven't read it, Emily describes the experience of raising a special needs child as being like diverted from one vacation destination to another. 

Maybe in her world. In mine, raising a child with special needs is no vacation. I mean, I've been on vacation, and I don't remember doing the Hiemlich, timing seizures, running to the ED by ambulance after administering emergency doses of valium rectally, having to fight legal battles to just let my child join her friends at typical kid stuff. I mean, on vacation you do stuff like relax, enjoy watching your kids build sand castles at the beach. Right?

In my world, I feel a bit more like Sisyphus. We never left the airport. Just what do you do when vacation is cancelled and your whole family is stuck for a lifetime at JFK International? Well, sure, you make the best of it: buy books, go to the restaurant, play games, nap. Talk about what you'll do if you ever do get to go on vacation. You might even start negotiating-- so what would it take to actually get to do stuff that other people do? You might even take turns going on vacation, or begin to build a new vacation destination that could accommodate your family. Or you might just pack up and go home, realizing vacations are not for you. 

But most definitely raising a child with my kid's special needs is no vacation. Not even in Holland. 

We should all be careful to remember that disability is very individual. Some experience a disability that impacts them in ways that are complicated, challenging and unexpected but ultimately not devastating-- say a child with mild Down's that grows up to hold a job and have a circle of friends and vote. Others may have a different experience-- maybe the version of Down's Syndrome that comes with the cervical spine instability and life in a wheelchair with a ventilator and a feeding tube. These are not the same experience. 

For me watching my child die by the inch is more than a change of destination. I have a hard time hearing the PolyAnna's in the disability community use a voice that sounds as if they are speaking for me-- as if I like them should be so unaccountably well adjusted, happy and accepting of my child's disability. As if I should be grateful for the beautiful lessons I have learned, the incredible people I have met and (supposedly) never would have learned or met without her-- which I am. It's just that I know that no version of the Glad Game will change conditions on the ground. 

I am still daily wrecked by my child's experience. She's eight. I don't think I will ever get over that. She was robbed. She got a raw deal. No parent should ever have to be on the line with a 911 operator while their child is seizing for the 19th minute, waiting for the siren, and answering "is she breathing? is she blue around the lips?" over and over.  I would NEVER demand anyone else go through this, not another  child, not another parent. 

No, it is not Holland. And stop saying that about the Dutch. It just is not nice.