Just When I thought it was getting better...

Saturday, 19 March 2011

Just When I thought it was getting better...

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!)

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.

...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?
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It's funny, because before my daughter was diagnosed (and now, my son as well), I cared SO much what other people, even strangers thought. I don't know exactly where the shift happened, but I realize that I cannot absolutely stay home all of the time. I have a spouse who is in the US Navy, and with him deployed, I don't have much of a choice. I have to go buy groceries at least once a week. I have to go to therapist appointments, I need gas for my car, and I do need to do things for me as well. We make a weekly trip (at the very least, sometimes more often) to McDonalds and a weekly trip to the mall play area. I often get judgmental stares, I know, but honestly, at this point, I just.don't.care. It's rare that they say anything to me, as we do live in an area of the country that has a very high autism population (thanks to the Navy's Exceptional Family member program, which restricts Navy families who have children high enough on the spectrum to only a handful of bases, one of which is where we currently live) and I think most people at least suspect something, whether or not they understand completely. When they look at my nearly five year old and see a pull-up peeking up out of the back of her jeans rather than a pair of underwear, I think they do understand to an extent and are at least less likely to say something to me, even if they think I'm a horrible parent because my child is screeching because she can't say the words to express that the sounds make her ears hurt or the lights are too bright for her taste.

The biggest problem and judgment that I receive seems to be the online community of parents of children with autism, who sometimes believe that their way is the only way to "do" autism. I am fairly strict and disciplined, and yet, I have a kid who is still a "runner" if I don't have a death grip on his wrist. I receive a lot of judgment from other parents whose children aren't exactly like mine. But again, there's a reason why autism is a spectrum with both the very high functioning, very low functioning and some that are somewhat in between. And even those on the same end of the spectrum are vastly different. Both of my kids are quite social, and aren't very far apart on the spectrum, but one has amazing speech and one does not. I wish more parents could understand that even with autism, not all kids are the same.
I did love this post, though, and thank you for writing it. I always like to hear more about parents who have teenagers and older with autism. I myself was misdiagnosed as a 6th grader with ADHD and a learning disability, when I now know that I have Asperger's (though maybe back then I would have been considered PDD-NOS) instead. But it was 1993; the name Asperger's didn't even exist until 1994, from what I understand.
- 3/20/2011 3:57 AM
- ThePiecesofOurPuzzle (message)
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I can fully relate with your post, I smiled knowing that someone else understands my world

My son, now 15, got the additional diagnosis of having "Intermittent Explosive Disorder" as the teen years set in (and those lovely mood altering things called hormones). So more often then not I don't take him out unless I am positive he can handle situations without a meltdown as they can quickly get beyond my control. Testosterone and him having about 30lbs on me make for an unfair advantage on his part, and believe me, he knows it!

But I do find that most of the world, even if they do stare, smile at us genuinely. Like when he's insisted on riding in the back of the grocery cart as a full grown man, sometimes with a blanket on his head. I let him, because my personal rule is if it doesn't hurt him, me, or anyone else then who am I to try to control him? I'm not perceiving the world as he does so I let him do what he needs to do to take care of himself. Many onlookers may be slightly afraid or unsure, but in general the unsaid message I get from most people is very kind. I think in some ways it is easier as my son has gotten older because he is more clearly "autistic" to others now, where when he was younger people just thought he was an out of control spoiled kid.

Thank-you for sharing your experiences and feelings, it was very interesting and enjoyable to read this
- 3/20/2011 9:46 PM
- taramcclintick (message)
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this website is very good, you can go and see it
http://www.shoes4world.com/
- 3/21/2011 2:21 PM
- Kate (site)
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