Monday, April 16, 2007

Unexpected Autism (April is Autism Awareness Month)




I'm feeling pensive today. I woke up sick, and slept in a little bit, then had to get up and do some things in the kitchen. That turned in to the whole morning spent cleaning out my cupboards and getting rid of gluten-containing foods.

You see, my 13 year old daughter is Autistic. It sounds harsh to say that. She's on the spectrum, and actually has Asperger's Syndrome. She is very intelligent, reliable, moral, good, sweet and kind, creative, dilligent and modest. She also hits herself in the head, shrieks uncontrollably when upset, stims by rocking or banging her head against the wall. What a bundle of contrast. This kid has a higher IQ than I do. When she was younger she'd keep a constant tally in her head of the number of syllables being spoken in a conversation, for instance.

The other day she came to me and asked to be put on the gluten free/casein free diet. She had been reading about it. I'd mentioned it to her a year or so ago, and she didn't want to then. Besides, I wasn't ready to force the issue. When kids are wee little, mom has total control of what goes into their mouths, but by middle school...not so much.

We started the diet within the day, and it has made a huge difference for her. Another reason I'd waited so long was that I was not informed enough to know that it can help Aspies as well as kids who are further onto the autistic spectrum, more classically autistic, with their symptoms. But it can. The difference is noticeable. And when we have an accidental infraction, it is obvious to both her and others.

So I decided, since two out of three of my other kids have some "spectrum symptoms" as well, that I'd just put the whole family on the GFCF diet. (I might retain some cheese and cream in my diet since I've got other issues, can't have the grains, and have to have something quick I can grab if my hypoglycemia goes kerplunk...but I can buy stinky cheeses that the kids hate. Bwahahaha!)

So today was that...cleaning out old flour cannisters that we'd finally emptied, etc. Doing lots of scrub downs of surfaces...and then some baking of gluten free bread and rolls, some making of popcorn for the kid's snacks, etc.

And while I was doing that, I was thinking. About the past. About this daughter of mine who really is no longer even a child. She turns 13 this week. It seems like yesterday when she was a newborn, put into my arms. I knew everything would be perfect. I would breastfeed and she would be healthy. I would do everything right and she would turn out right. Like a mathematical equation. And I would have it all under control. I did breastfeed. She was healthy. And normal. And bright. I thought. But then...not so much. Life got complicated.

I'm racking my brain to think of when her precise and precocious speech turned abnormally high pitched. I think it was when she was three...shortly after I weaned her. But maybe it was always that way. I didn't think anything of it though. Did not know it was a marker. It was just "her". I remember she'd get lots of ear infections as a toddler. She had all her shots on time, and I did not notice any adverse reactions, or any big regressions. But now I wonder about them. She walked at age nine months. For her second birthday she said: "I want a yellow lemon cake and balloons!" By the time she was well into her fourth year I knew she was different. But I couldn't put my finger on HOW she was different. Very very verbal and smart, and I worried that if I put her into school, she would be pigeonholed as ADHD and I knew that would not be right. She could read at age three. I mistakenly thought I was super mom for having shown her how to read by looking at letters on the tabloid covers at the checkout line of the grocery store. That was hyperlexia. She would play with her character toys by lining them up...over and over again. I thought it was cute to see a little line of plastic Winnie the Pooh characters and various Happy Meal toys lined up precisely on the edge of the coffee table. The block structures she built were astonishingly complex and beautiful, like Schloss Neuschwanstein or the Hagia Sophia...complex, intricate and visually well-balanced, with secret walkways, turrets, spires, towers, lairs...Ok, maybe I interpreted the simple wooden blocks as such, but I have never seen a child's block play result in the things she built...before or since.

Her tantrums were amazing, and we got admonished by our church's minister and his wife...if only we disciplined her better, more consistently...she would not be the way she was. It was our responsibility, this out-of-control-ness. We ought to spank her more. And for goodness sake stop going to La Leche League meetings, since those were the cause of our parental indecisiveness, to be sure! --How horrible. I'm glad we are not there anymore. Sometimes I want to call those people up on the telephone and say: "Do you remember my daughter, and how you accused us of bad parenting???? Do You? Well, she's AUTISTIC!" In your face, so there! I guess I'm still a little bit angry about that lack of understanding. Getting a diagnosis is a good thing.

That, however, did not come until this past year. We literally muddled through her childhood.

My point to this story: Life's journey can take some unexpected twists and turns. If anyone had told me starting out what all my life would bring, I don't think I would have had the courage....this trial, other trials, I've been very blessed. The trials ARE the blessings.

And through it all I have learned so much. I'm no longer afraid of the odd person who sits alone in the back pew...every church or school has at least one, I think: Slightly unkempt, social outcast, odd clothing, weird body language...for some reason most neuro-typicals are somewhat afraid of folks like that. The reason is, we humans have complex and unwritten rules of behavior, body language, boundaries, etc. and when these things get violated it creeps us out. We wonder about the other person's motives. We feel like we are in danger of being stalked. And all it is is a breakdown in non-verbal communication. Nothing sinister. Just that. Like culture shock.

April is Autism Awareness Month. Think kind thoughts about the next mother you see with a tantruming child. That child might be autistic. And no, you couldn't do it better than she can. 1 out of every 150 kids is now on the autistic spectrum. It's scary. Back in 1970 it was 1 in 10,000. Something is very wrong.

3 comments:

Mimi said...

She is amazing, as are you as her mother!

I nominated you for a Thinking Blogger Award.

Anonymous said...

I remember your lovely daughter as a tiny child, and I thought -- I, a childless single, can either be exasperated at her toddler's antics or I can get involved. So I started to hold her in church and magically my exasperation melted away.

I remember her reading with extraordinary facility. It was a little scary, and I asked you -- gosh, you let her read pregnancy books? The parts about crisis pregnancies? And you said, it's just a thing, she's reading the words, not the meanings. I thought, wow. The mind, rare and strange. Incredible.

I remember taking her to a college science lab on her 10th birthday and she loved *everything*, especially this really cool slinky-like thingie. We thought, this is the kind of kid we wish we had in all our classrooms!

I remember her one recent Sunday, as tall as me! -- and her white, white skin and blue, blue eyes and golden brown hair. And her high voice, frantic as she told you her problem. She needed a fork. You were so calm.

Dear Alana, you are given her for her salvation, and she you, and she could have no better mother in all the universe than you, and you know where the other church folks can stick their parenting advice and where all of us this-church folks can stick our stupidity when we're stupid about her. Please God, you, dear friend, will continue to educate us out of our stupidity as you help her through her mazy path.

Kyralessa said...

"Her tantrums were amazing, and we got admonished by our church's minister and his wife..."

Since all kids are different, it's pretty remarkable how many adults think they know better than you how to discipline your kid. I especially love those who raised their kids _fifty years_ ago and apparently believe society hasn't changed in the slightest during that time.

Now if you'll excuse me, I'm off to go find my rod so I can discipline my two-year-old in the biblical way. (Not.)