July 22, 2010
Guest Blogger Thursday
Through my Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist
Today’s guest blogger is Susan Senator, and I am truly honored she allowed me to share her writing on my own blog. A few months after Justin was diagnosed I began reading narratives of other families’ journeys with autism (at this point I considered memoirs a break from the internet and a welcome escape), and Susan’s debut book was one of the many I chose to read. What made it invaluable to me was that it was the first I could find that related the story of an unrecovered child, and demonstrated a way of life that permitted me to hope that even if Justin didn’t end up in that small cadre of fortunate children, I could still retain my dreams of having a happy family. I am forever grateful for that early insight.
I chose this particular piece because in many respects, I feel my greatest remaining challenge in my daily dealings with autism revolves around my own perspective on it, my need to escape my own head. I am certain my readers will enjoy her writing. Thank you, Susan!
Thursday, April 29, 2010
Getting Out of My Own Way
I was very surprised at how much I enjoyed the afterschool class I teach — little girls’ Middle Eastern dance (aka Baby Bellies). I have not taught BB all year — I got burned out last year — and so I have not been in my stride. Today was the second class. And I was totally dreading it. I looked at the bag of bright colored jingling shmatahs, and I thought, “why did I sign up for this?” I was remembering class at its very worst, when there were about 8 screaming 8 year-olds, running with my veils dragging, and all kinds of school people (kids, teachers, specialists) looking at us to figure out what the heck we were doing. And there I would be, with my hip scarf tied around my jeans and my boots off, trying to teach these girls a few bellydance moves while trying not to perspire too much. Good luck with that, as Jerry Seinfeld would say.
The problem with me is, sometimes I get in my own way by thinking I know what something is going to be like beforehand, and then getting sick of it before it even happens!
To be honest, there are some Fridays where I think, “Argh! I almost forgot, Nat’s coming home for the weekend.” And, please God forgive me, my spirits plummet. I immediately think of how I’m afraid it’s going to be, namely that I will be trapped in the house a lot unless I want to take him out with me. So I make the mistake of feeling like I know what it’s going to be like (living with Nat the way it is at its worst) before the guy even steps off the bus.
There were so many times in his younger life when Nat was so difficult my life felt like a prison. I am so sorry to say that, and I’ve said it before for sure, but it is the truth and that is that. It makes me sad to think that I have felt this way about my son, whom I love probably more than I love myself. But loving someone and living easily with someone are two different things. There was the bloody wrestling to the ground outside of the Stop & Shop. There was the horrible struggle in the subway, holding onto Baby Benji while fending off Nat. There was the clawing of Max’s hand at the Bertucci’s. The screaming, screaming, screaming. The inexplicable screaming at the end of George of the Jungle (probably warranted, when you think about it). The attack while I was driving. The pouring of water in the handbag, the pushing over of little kids at the playground. These things die hard in the memory. It is very unfair to him. That stuff, after all, is the disability. Or, more accurately, the co-morbid conditions that frequently accompany autism. There is no wheelchair, there is no cane, no feeding tube, no weak heart. There is the sudden, scary snap. Intermittent Reinforcement, a most powerful psychological dynamic. Rats.
He’s not like that now. Now there is this fast-moving young man, very content to be himself, anywhere, with anyone. He is game for anything: a trip to the mall, Home Depot, a restaurant, a bookstore. He will try on shoes, try new foods. He will sit and read his social group schedule over and over again, and leap up off the couch when I say, “Okay, it’s time to go, Nat.” He loves visiting people, loves parties, I could go on and on (especially since this is my blog, and not a newspaper or editor I’m writing for). So what, then, is my excuse? Get over it, right?
There is, however, my low-grade anxiety that is always with me, like a small, invincible infection: the worry that somehow, what he does with his time is not good enough. And it is that feeling that I dread on a Friday afternoon. I have pinpointed it as of today, right now. The feeling, the fear, that I am allowing a mediocre existence for my son.
Which is interesting, because that was exactly what made me dread Baby Bellies. For the longest time I felt like I wasn’t very good at teaching because I could not reign them in. I could not get them to systematically learn the moves. I couldn’t get them to pay attention long enough, before they starting pleading for the snack I always bring. I have a memory for the bad stuff, that’s for sure. The long hour of getting pissed off, of hearing my amazing Arabic music, and having no one really listening. Of not knowing what level to teach, what to expect.
Sometime recently, it gelled, however. I realized that I could sit down, pick music at my leisure, and be there for them — let them come over to show me stuff and to ask questions. When I feel so moved, I stand up and start doing the Basic Egyptian (walking with a hip lift, trading off sides), or some zilling (playing finger cymbals). Every now and then a pair of girls will have a duet they made up. Today S and J invented “the tunnel spin,” which is the two of them facing each other with two veils draped over their heads, covering them both, and then they spin apart. The other girls wanted to learn it. Then E starts in with her move, “which is kind of like jumping rope with a veil.” “Just be careful not to trip,” I say. Off in the background, always always where she is not supposed to be — by the desks piled up in the corner — is K, saying, “Pretend I’m…” or “Pretend you’re…” Those were my exact words when I was her age. And I thought, how I would have loved a class like this, with a mellow teacher who never yelled, never shamed anyone, encouraged, taught you when you wanted to learn, and brought in all kinds of dress-up materials. Weird music, but nothing’s perfect.
So I ended up having the best afternoon with the Baby Bellies, staying way beyond the scheduled hour, so they could show their moms what they had learned. R does quite a decent hip-bump sideways walk with double veil (something I don’t think even Petite Jamilla does). K is just in her own world, wrapped in her turquoise like a blue mummy. I just sit and soak it in, a happy sweet-filled sponge. And so, I’m going to go into sponge mode tomorrow when that van honks.