Susan's Blog

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.


Dear Susan,

You are such a good teacher…in so many ways. Thank you for writing.

— added by Timmy's mom on Friday, April 30, 2010 at 6:31 am

I hate the words co-morbid. B/c if all the “extras” that may occur with autism are “co-morbid” then what’s autism?? Is it not a group of symptoms that may or may not occur??

I read an article once where the man was asked how they stayed married for 60yrs. His answer “Loving someone is easy, it’s whether or not you can live with them”. Very true and something that those parents who have to take extreme actions to get care for their children, know. And those that mock them for it, forget.

— added by farmwifetwo on Friday, April 30, 2010 at 7:34 am

Good point, FW… Ned always says that autism is just a bunch of symptoms that we call autism.

— added by Susan Senator on Friday, April 30, 2010 at 7:38 am

I absolutely loved this. LOVED it. Speaks volumes to so many of us.

— added by redheadmomma on Friday, April 30, 2010 at 12:19 pm

I still feel a twinge of geralized, reflexive guilt now and again when I know I am just going through the motions with Stefan — I’m distracted and listening with one ear — to this beloved child who didn’t converse with us for so many years. We would have done anything back then to have Stefan call up and want to talk about his life!
And occasionally I think we should include him more spontaneously. I comfort myself by remembering that he has alot in his life now, work and a few loyal friends who have been with him since high school. Most important, he found a Church congregation that has totally embraced him and from whom he draws much affection and strength. Still. . .

— added by Jamie Ruppmann on Saturday, May 1, 2010 at 9:41 am

Susan, thank you for your honesty today. Thank for for putting into words what all of us parents dealing with autism are thinking and feeling every day but we keep these thoughts to ourselves for a variety of reasons that you know all too well.

— added by Sharon Jones on Monday, May 3, 2010 at 1:05 pm

Yes, that all-pervasive low-grade anxiety that never seems to completely diminish, even though our son’s behaviors have. So often I ask myself if I should be doing something else for him, just something “more”. When I do this I also try to analyze whether this potential addition to his life is what I think he should desire, or in truth what I desire for him. I’m trying to relax more and appreciate that he is ridiculously happy for any child, much less an autistic one, and to be satisfied with that. He’s only seven, perhaps I’ll get there permanently one day…

— added by kim mccafferty on Tuesday, May 4, 2010 at 11:14 am

You’re not giving Nat a mediocre existence; you’re doing your best to find what makes him happy and help him achieve it. If he seems content to sit on the couch and chill then you’re not shortchanging him by letting him do that. It sounds like his weekday schedule is pretty busy and like most young men his age, when the weekend rolls around he wants to relax.
My sons are 19 and 21, both college students, and when they come home for the weekend they like to sleep late and hang out around the house. Yes, they visit with high school friends and go into NYC to clubs and concerts, but mostly they’re home, just chillin’.
I used to think when they were younger that I should always be doing something with them, enrolling them in classes and taking them to museums and art galleries because those are things I would have liked to have done when I was a child but they really didn’t want that.
You’re being a good mom to Nat when you let him just be.

— added by Palmer on Tuesday, May 4, 2010 at 4:36 pm

[…] Getting out of my own way […]

— added by Guest Blogger Thursday « Autism Mommy-Therapist on Thursday, July 22, 2010 at 6:24 am

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