Thursday, March 1, 2012

If I can make it there

There's a movement starting in the special needs community called The Oxygen Mask Project. The idea is based on the spiel we all have to listen to every time we get on a plane. Put the oxygen mask on yourself before you help your children, because if you go down, you can't help anybody. For parents of children with special needs like autism, it can be so, so hard to do this, but it's true. If we don't take care of ourselves, we won't be able to take care of them.

I remember when I first heard about this idea, and I thought, that's really smart. I'll just stick that idea here, at the bottom of this really long list of crap I need to do. At the top of that list was my (ultimately losing) battle with my school district over changes they had proposed for my son Jonah's special education program. For weeks, I wrote letters, yelled, pleaded, recruited, spoke at board meetings and lost sleep. In the end, I failed, and I ended up with a deep cough I can't shake and a fantastically sexy psoriasis flare.

I first developed psoriasis last year around this time. My type is caused by strep infections and/or stress. I had two strep infections within a few weeks of Jonah's start date for special ed. Again, I wasn't sleeping, I was sick with worry, and I was just plain sick. What can I say? I'm a slow learner. Here I am again, and this time I need to sit up and take notice of what my body is telling me. The problem is, I feel like a jackass, demanding a little "me time" when so much is going on. Yes, I have three young children, and two of them are twins and one of those twins is autistic. But is that enough? I mean, Jonah's pretty high functioning. It could be a lot worse, and for lots of parents, it is. I feel like there are moms out there who adopt 14 severely disabled children and spend their days smiling and counting their blessings. I sort of feel like a whiny jerk, but I'm trying to squash that feeling down and make some changes.

For me, it really helps to have something to look forward to. Something big. My friend Jim is starring in a play on Broadway this summer, and I have vowed to go see him. Someone asked me if I'd be taking my kids. Um, hell no, I'm not! Does schlepping three small kids through New York City sound like a vacation to you? I want to stay somewhere nice and sleep as late as I want. I want to catch up with old friends and drink wine and eat wonderful things and just shake out the kinks for one measly long weekend. I even like that it's not until June. It gives me somewhere to go in my mind, when checking out mentally is the only reasonable option. I like the whole idea of looking forward to something. Of looking forward.

2 comments:

  1. Oh Meg. You're not whiny, not in the least. Please tell me something I can DO. I don't want to be useless.

    And hey, we are going to NYC sans babies in June too...crazy! Tell me your details and also info on the play....

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  2. I love this! Not the psoriasis flares, but the taking care of you part.

    I help run the oxygen mask project site, and we'd love to feature your post on our site. Can you email us at oxygenmaskproject at gmail dot com?

    Alysia

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