Thursday, March 22, 2012

The Best Ever

My kids don't watch very much network TV. We usually choose Nick Jr shows or movies for them. In other words- they don't see too many commercials. Over the holiday season, there are lots of specials they want to watch- Charlie Brown, The Grinch, etc. Since they're on regular channels, commercials are unavoidable. The problem is this: Elena is six years old now, and I've noticed her focusing on ads for the SPCA, St. Jude's, UNICEF and such. I'm pretty quick with the remote and skipped over these commercials for her, but yesterday, I messed up.

We were all in the car after school, and a commercial for a local animal shelter came on. Honestly, I wasn't paying much attention to the radio, but Elena was. Suddenly, she just burst into hysterical tears. "What?!? If nobody adopts the animals, they KILL them?!?" She was just inconsolable. "People have lives, and nobody kills them- why should they kill animals? I don't want them to kill animals because I love nature and dogs and sobsobsob". I was so upset for her and proud of her at the same time. Y'all, I have never talked to her about this. She is so, so tenderhearted, and these kids have their innocence for such a short time, I just didn't think she needed to know about animal euthanasia or childhood cancers or world poverty or any of that. She'll know soon enough, and I guess I just wanted to protect her heart a bit longer.

I'm not sure I'm right about that, but the point is- I'm so proud of what she has come up with on her own. She is just a genuinely kind person, and she has such character, and I am just blown away by how fantastically wonderful she is. Several other parents have taken the time to tell me that Elena has helped their child when they were hurt or crying or upset. Jonah idolizes her, and those two are serious buddies. She graciously includes him in everything and tries to teach him new words and skills. Basically, she is just the best thing ever the end.


Full disclosure: In the middle of this whole scene, I turned around to check on Elena, and Gabby caught my attention. She rolled her eyes, jerked a thumb in Elena's direction, and said, "Drama queen!", I kid you not. She is a tiny little tough cookie, that one. But that's another story.

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.