Just When I Thot It Wuz Gettin’ Better…

Yesterday was one of those days in Graceland, aka Autism-ville. As I finished my errands and walked the last isle of Whole Foods, I mentally patted myself on the back for choosing to shake my head, laugh, remain relatively calm and not FREAK OUT at my daughter's antics. She put on quite a show while we were out. Dancing in the isles to the muzak. Sniffing the backs of the bare, perfumed necks of three pretty, young, pony-tailed women. Proceeding to eat an orange slice after she'd dropped it on the floor–much to the disgust of a mother and two preppy-looking children passing by us. I ran into a former teacher of Grace's. She had some important information to impart and, finally, I had to tie Grace to me, having her hug me from behind and despite her resistance, hold her arms around me, locking my fingers in hers while I listened to the teacher. When I released her, Grace wasn't happy about her imprisonment.

As I exited the store, I realized that not everyone does this. When people have children with ASD who act as nearly ferrell as my daughter does sometimes…they. don't. take. them. out.

What does that say about me? I should sequester myself and my child from the curious onlookers? Or, is it testament of something I decided long ago?: "I will not let Autism rule my life." There. Go ahead and stare.

HOT DOG! A spontaneous dance floor while out shopping! The musicians didn't mind and kinda seemed to dig it. (And, my heart can really dig that back!)

…Just when I thought things had gotten better in the gaping department, I realize, we are in for it. We've got it bad. This June, Grace will turn 17. She's thin. Tall. Luckily, quite pretty and possesses a smile that will make a softy of most the hard hearteds. But much of the time she's live-wired and also has the aid of the Energizer Bunny to boot. Music? She rocks out. Taking up entire isles of Target. Rubber bands? Paper clips? Pony tail ties (even when being worn)? She's swooping down and going for the catch, even if it's covered in dust bunnies underneath some forsaken part of a retailer's floor. Food? She's all over it. No matter to whom it belongs.

Perhaps it's my own autistic genes (the apple doesn't fall too from the ol' tree). I get engaged. Engrossed. Busy. Suddenly, the eyes in the back of my head send a signal to my maternal brain. I feel people staring. I look up. Horrors! I hear giggles. Whispers. Fingers point. Looks of horror mirrored. Oh. No. What's she done now? Do I apologize? Explain? Act nonchalant? Generally, I choose the later. Otherwise, I'd be in a perpetual tither.

I'd concocted quite the theory just a couple years back: Our country had grown so much more tolerant of this weirdity called autism. Congress passed the Childcare Initiative Act in 2000, granting the most significant funding to date for autism research. Everybody and their brother and their cousin and their neighbor at least KNOWS somebody on the spectrum what with the incidence skyrocketing to something…I can't keep up…around 1 in 100 or less. Autism Speaks purports to talk for all of us. And, despite how I generally detest their negative Madison-Avenue slickered message, they have called a lot of attention to the lot of poor old us. (Then those of us who don't think autism is some horrible, awful, dreadful thing that came and stole our innocent children in their jammies overnight–despite what I write in this post here–have to swoop in and do some serious damage control.) For a while there–in my view of the world–everybody seemed to calm down a bit. Suddenly, I'd catch people looking at Grace and then smiling or have this little look of understanding written all over their face. Some communicated via some sort of unspoken code that I totally got that they knew this was autism and they were cool with it. It was obvious she was this big, this age, something has to be wrong with her. Bless.

What happened? She got BIGGER. Author-advocate friend John Shouse once said to me that it's cute when, at age three, our kids stand out on the front porch in their birthday suit. But, it's not so funny at 11. And, in my experience: definitely not at nearly 17. (I'm not so sure that something bizarro like that didn't happen just last week.)

Flashback. My now deceased Mother, in a typical hyper-critical moment, suggested to me that it was about time her granddaughter learn to cover her mouth when she sneezed and say "please" and "thank you." Well….Thank YOU very much I told her. Ummm. It's not like we haven't been trying to teach these things from the time Grace was diagnosed at nearly three….Progress is slow. Very. Very slooowwwww.

So, I'm back to where this all started: at the last isle of Whole Foods, shaking my head and torquing my arm around to pat my back. And refusing. Refusing to ground myself or my daughter just because we are a little different. Uhh. How about a LOT different. Even weird. Oh, well. I "heart" weird.

When I wrote about what I call every parent's autism Wal-mart story, and which I also mention when I speak to "newly diagnosed parents" every other month, it struck/strikes a nerve. How are your nerves holding out, parents?

0 Responses to Just When I Thot It Wuz Gettin’ Better…

  1. I am growing more comfortable with it, too. I’m not to the place where you are, Leisa. My heart breaks for my daughter’s (w/ autism) neurotypically developing siblings, at their embarassment in public. One does a better job at hiding it in the moment than the other, yet they both express the hatred at the gawkers and the behavior that provoked the stares. *sigh*

  2. If the choice is between going out and being gawked at or locking yourselves in your house, I’m definitely all for attempting to ignore the looks and going out.

    Sure, there are those habits/behaviors/traits that might cause the uninitiated (and even Mom on a tough day) to stare in horror, but on some level I figure we all gotta learn to get over it.

    Your point that the skills you are hoping your kiddo eventually learns (covering her mouth, etc) are sloooooow to develop only underscores how important it is to keep on keeping on. If you continue going to the store/library/park/play/camp/club/salon regularly enough, long enough she will eventually pick up a lesson or two (even as she picks up dusty rubber bands and paper clips.)

    At least that’s what I tell myself when B escapes my attention for the 4 seconds it takes me to enter my PIN at the register and impulsively locks the automatic doors at Publix causing customers to be trapped in the foyer until we discover what’s he done. Again.

  3. Oh, @Penny. Dear. I am a mother of only one. As you know. And my heart has just always gone out to the special needs siblings. Good thing is there is so much literature out there to help now though much for older sibs. I found this when I researched my second book, that I’m now working on–and I did that research, initially–when I wrote the book’s first draft–back in 04-5.

    The other good thing about this otherwise dearth of a state funded services desert you are moving to is we are quite creative and plentiful in some departments. Of particular note, Vanderbilt and I think the Autism Society of Middle Tennessee and the Down Syndrome Association of Middle Tennessee collaborate to bring a great sibling workshop & groups (for the kids!) I cannot recommend them highly enough to those dealing with the issues of siblingdom. Also know that there are many attributes that will positively shape them bc of their sibling. Not blowing smoke here. There’s research out there. But, yeah, it’s kinda sucky at times!!

    Hey, come to an Autism Orientation (third thurs e’ry other month when you get to town. I lead the parent portion. I know you could lead it just as well, but it will be a good intro into the flow of our community here albeit you’re already impressively immersed.) Looking forward to your coming and I think you are a candidate for the Mothers From Hell and Friends, darling. We have the nation’s most famous or 2nd most famous chapter.

  4. @Charlotte, dear. You are so supportive of me. MmmmmWAH! I hear you. I was thinking this the other day. I need to go back and mine the blog. I just want to keep them theme of the first draft of the book. I think I can do both. And this is more the description you’re talking about? Love you, dear. xoxox. THANKS!