Thursday, October 29, 2009

A string around her finger

My daughter is a very "in-the-moment" kind of girl. I liken her to a little butterfly flitting and floating about. She's very happy-go-lucky with intense quicksilver emotions. The only problem is that the objects in her world are very loosely attached to her too. If it's not needed in-the-moment, off it goes - flung off carelessly into the stratosphere - never to be thought of again until the next time it occurs to her to look.

This morning, it was her backpack. Unlike days gone by where it was a child's choice whether or not to carry one, now it is required by the school. When we got to the bus stop this morning, there she stood - 3 little ponies and a stuffed cat in hand - innocently asking "Mommy, where's my backpack?" Me, I hadn't noticed it wasn't there, as I had grabbed both kids' umbrellas in case the gray skies actually opened up on us.

Sigh - of course the *right* thing to do is send her back for it. Except, she won't learn the lesson, and I'd be stuck driving her to school. Meanwhile, Chris's bus is due any moment. I tell him to hand his stuffed tiger to his sister when it arrives. Off to get the backpack. I get halfway down the block to see his bus pull up. After making sure he got on, I continue on toward home for the backpack. (Incidentally, she was waiting with her best friend and best friend's mom). I get back and ask her if Chris gave her the tiger. Well - Responsible Son didn't want to leave it in the wrong place, so he took it with him. Turns out the bus driver is holding it for him. Thank you, Considerate Bus Driver - you must have kids too.

Yesterday I had made the mistake of sending her to school in layered shirts. It was picture day, and I'd grabbed a cute, inexpensive shirt at Walmart because it was a pretty color on her. Like many of the current fashions it was actually two pieces layered together. Because of picture day, I forgot that this is always a bad idea. I'd braided her long hair into pigtails as well, in hopes of keeping it looking nice for the picture - along with a stern warning to Leave Them Alone until afterwards. As she got off the bus her hair was flying loose, she handed me the hair elastics, and the top shirt was flying free, left dangling by the little plastic hang tag joining it to the shoulder of the shirt underneath. My wee little snake, constantly shedding her "skin" everywhere.

My mother loves to buy my kids these cute 3 piece outfits - pants, shirt, warm-up jacket - or pants, shirt, vest, etc. Yeah, not a good idea for Little Miss. It took me a while to catch on, but after numerous calls, emails and notes to teachers to "please send Charlotte's sweater/jacket/gloves/hat home again" I've come up with a system. All her school jackets have hoods, all her school gloves are dollar store cheapies, and in winter (when Little Miss is cold all the time) she wears a strappy camisole under the appropriate weight shirt or sweater - she's not allowed to run around school in that so she can't take her shirt off.

Now if I can just fasten her backpack to her coat I'll be all set...

Tuesday, October 27, 2009

The daily-ness of autism

When you are raising a child with special needs, you encounter many family dynamics and situations that are not covered by the standard parenting practices. It's hard to even define a "normal" day in a house with a special-needs child. The minute they receive their diagnosis, life ceases to be "normal." The best you can do is to create your own "new normal."

The special need we deal with in our household is autism. Despite what you read and hear from a few famous folks - autism has no specific known cause, no known cure, and no standard method of treatment. Many therapies have been proven to help, and many are just so much snake oil. Every autistic child is different. Not even a doctor can say which child will respond favorably to which treatment.

We are some of the "lucky" ones. Our son was diagnosed PDD-NOS when he was 31/2. After a year in a special preschool (offered gratis by our public school, otherwise he couldn't have gone) the doctor said he could now be considered merely Aspberger's (the mildest form). On a good day Chris seems just a little eccentric. On a bad day (or bad week, or month), like recently - well - let's just say postage to Timbuktu or Saskatchewan starts looking pretty good. For me.

People try to be helpful. "Well, I saw on Supernanny..." Um, no. Unless you have an autistic child or are trained to work them, you DON'T understand. No matter how much you think you do. If you have an autistic child you can safely throw all your regular parenting books out the window. What works with them changes yearly, monthly, daily, sometimes hourly. Schedules help. But as any mom knows - life happens to schedules.

I have within the past few years become blessed by friendship with the moms of some of my son's classmates/Scout mates. When we have a chance to talk - wow, the relief! Yes - here is somebody who understands what my life is like. For me, the hardest part of the day is from 4PM to 8PM - the time when my kids are all home but my husband isn't yet, and I have to somehow make dinner, referee homework, and sort out the various autism drama that each new day brings. With a constant eye on making sure Chris doesn't get red food coloring or MSG (autistic kids are notoriously sensitive to food additives) and an eye on his nutrition and vitamins (autistic kids are notoriously rigid eaters), keeping track of what this week's "currency" is to use for discipline, and hovering over him like a hawk to make sure he hasn't found yet another new thing to stim off of - those few hours can be the most exhausting of my whole day.

Oh, and let's not forget about the family dynamics between the autistic child and his "normal" siblings (though really, who knows how normal or not they are - since all the traits cluster together even without a formal diagnosis). Toss in one probably-should-have-been-diagnosed-ADD mom frantically trying to hold the whole schedule together - and you get what I lovingly refer to as My Three Ring Circus.

You know, people got on my case for years about why I wasn't Using My College Degree. Ha! If only they'd known. I tell you what - that degree in Psychobiology may not have led to a career, but it has become one of my most useful weapons in the war against autism. Funny isn't it, how things work out?

For now, it's back to my regularly scheduled chaos.

Saturday, October 24, 2009

i need to start thinking in sound bytes

Since it's obviously too much trouble for me to actually finish a whole post, perhaps I should do like the media does - hit you with sound bytes.

Then you would know that while you've been seeing nothing but blog-silence my mind has been busily pondering...

- the fact that most of my daily jobs as a mom have nothing whatsoever to do with the 17 years of schooling I spent preparing for my life

- that having a special needs child impacts the whole family every day in ways I forget about until talking with moms of "normal" kids

- the amusing differences between Girl Scout and Boy Scout meetings

- the sea change going on in America's churches

- the fact that safety is really an illusion

- why it is that even though I'm married with kids I still react inside like the shy nervous teenager I was when flung into a new social situation

And maybe, just maybe - I'll have a chance to expand on one of those in the near future. But right now it's Conference Day at my kids' school so I must get ready to go discuss Important Things.