As I begin to type here I am acutely aware of how little I know about anything at the moment... about autism, about the future... because I'm no kind of an expert on this topic. But writing is what I do when it feels like the weight of the entire world is weighing on my mind and so here I am, writing down thoughts that may or may not be worth reading.
I guess the beginning is as good a place as any to start.
I felt like I'd found the answer. I used the birthday money she'd been given by my grandparents to buy a little enclosed trampoline, a balancing toy, a sit and spin, along with some little sensory toys that amazon suggested the moment I began looking at sensory stuff. My parents sent her a sand box that we turned into a sensory box and for a while we saw some improvement in her behavior.
I'd already noticed that her diet seemed to drastically effect her behavior and while I'd initially thought wheat was the problem, I thought I'd narrowed the problem to milk after a few months of trial and error. Still, I avoided buying wheat almost entirely and checked labels for it.
The school's are busy, I told myself as I tried to come up with sensory activities on my own.
Then came a day a couple of weeks ago when I stared at the kitchen cabinets, trying to come up with meal ideas. I had a huge bag of flour and after staring at it for two days I decided to make some bread. Shopping was still a few days off, and we had rice and beans and oranges, but bread just sounded so good. After all, I told myself, milk's the problem. Sure I feel better when I don't have wheat but it's not that huge of a difference.
I baked a beautiful loaf of bread and my family devoured it.
For the next two nights Mae woke up screaming in pain in the early morning hours.
On Wednesday, six day ago from the time I'm writing this, I took her to see the doctor. The doctor immediately thought celiacs and then proceeded to spend around forty five minutes with us, watching Maggie and interacting with her. I'd mentioned right away that we thought she had a sensory processing disorder, because we'd had to take her boots off to weigh her and that is a major trigger for a tantrum of monumental proportions. She wears her red boots day and night and hysterics are basically inevitable when they come off her feet at bath time.
Surprisingly Maggie really took to this doctor (who offered to be her pediatrician and who I'm now asking for every time we call the office).
"I saw a test online, when I was looking at the SPD stuff and I took it," I found myself saying, "and it said that I needed to see a doctor for her, but I thought that it was just because there's so much overlap between SPD and Autism symptoms."
"The MCHAT?" The doctor asked and I nodded. "We actually have that test here and I could give it t her, but after watching her I know what the results would be. So I'm going to refer you for more testing." I nodded again watching as Mae stomped around the room in her red boots.
I felt oddly relieved. Answers. I was finally getting answers.
Things I'd never worried about, like sitting beside the TV when Dora was on and watching it sideways were on the list. Her new habit of teeth grinding, which had begun when we took away her binkies, was an indication (that was one way to get me to return the binkies... screaming I could have handled. Loud non-stop teeth grinding had me begging for her to take them back). Particular moments stood out as well. That day by the swings where she was slammed across the playground by the swinging child who hit her, when she flew through the air and hit the ground hard and didn't seem to feel it. All the skinned knees that never resulted in even a frown much less a tear.
I sat and wrote out a list and it filled an entire page.
The moment we had gotten home from the doctor's office I had called the mental health office and made an appointment. It was only five days away. I watched the calendar, impatient for more answers, wondering what they would say.
Waiting rooms with Maggie are usually a nightmare. She wanted to run the halls and running the halls was far more interesting than the crayons and paper I'd brought just for her. I clung to her hand until it was our turn to go in.
Maggie played while a counselor watched her and took down my answers to questions for two hours. At the end she came to the same conclusion as the doctor. Yes, she believed that Maggie was autistic and would be sending her on to the next test which would likely confirm it. They could fit us in on Tuesday.
In the hours that followed my thoughts were crowded and jumbled. I couldn't think of anything else. Most of the time I felt at peace but then I found myself sitting at my sewing machine about to burst into tears, not entirely sure what I was crying about because I wasn't even thinking of anything in particular. When I pinpoint the cause of the tears though I guess my number on fear for her is the unknown. How well will she be able to communicate with us? Will she be able to speak?
And that's when I decided to take a brief blogging break, to work through all these thoughts.
Maggie is an awesome little kid. She is a little exasperating spark that lights up my days. And a big part of her awesomeness, which I wouldn't change for all the world even if I could, are those little quirks. Her fearlessness and bravery, her intelligence, her daring and her sweet cuddliness, even the hard kisses she loves to give, are all places where I can see the symptoms that the doctor's talk about... but they're also a part of her Maggie-ness.
She amazes me every single day. And while I would like to temper her recklessness because I'm afraid she's going to hurt herself or run into a busy street without giving it a second thought, I'm also at peace with the fact that whoever this little bundle of energy is and whatever challenges she's going to face, she's absolutely amazing and absolutely loved.
So here we are, at the beginning of this new journey. I'm sure I'll be adding to this page in the coming weeks as we find out more and move forward helping Mae communicate with the world around her.