Continued from “Swan Dive”: http://weardenfamilynews.blogspot.com/2016/08/in-which-andie-takes-swan-dive-off-deep.html
The process was a lot slower than I would have thought, the road to diagnosis. Michael and I were certainly not hurrying the business along--we didn’t want to rush and affix a label to what amounted to little more than a baby. During all of these specialist appointments Dr. Stripling had set up for us, we were deliberate in our language, revealing only the pertinent information, answering direct questions but volunteering little. Above all, we never used the word. Wouldn’t want to put the thought in their head.
Nevertheless, we couldn’t seem to stop them from saying it, regardless of our efforts or test after negative test:
“Have you considered it might be Autism?”
Considered it? Of course I considered it. It was all I was researching, the subject of every book I checked out of the library. It was this unclear, incomplete picture that I was holding up to compare my little boy to, and I just wasn’t able to make sense of it all on my own.
Three particular behaviors were causing the most consternation for us at the time: trichotillomania, pica, and destruction.
These words were fresh and new to me at the time, in early 2011. I kept turning them around in my mouth, whispering them while trying to reconcile the doughy, clinical word with my pedestrian every day.
I have to imagine I looked a little like Angelica’s “Cynthia doll” (from Rugrats) while the pediatrician attempted to explain compulsive hair pulling to me.
From the time Gabe was a small child, whenever he was anxious or agitated, he would stick his chubby baby fist in my hair and twirl. He himself was bald as a button for the first year of his life, so he soothed himself on my less-than-luxurious locks.
This was still at a time when we worried where many of our meals were going to come from. It was better than it had been, particularly because we were receiving around $200 from food stamps and I had gotten so much better at “budget shopping”, a skill my mother had taught me to maximize limited groceries funds. Most of our meals were filling--heavy on the carbs--but in an empty-calorie, nutritionless way.
Had I had proper nourishment at the time, my fine hair could have probably withstood the persistent touching. As it was, my pregnancy hormones long since gone, Gabe’s sweet baby hand came away with clumps of hair more often than not and my hair was thinning noticeably.
I never saw it as a problem. My sweet cousin Tyler was a hair-twirler as well. Whenever I would babysit him, he would sit in my lap and listen to me read book after book while he softly tugged at my locks. Tyler wasn’t autistic; how was this any different?
Once Gabriel’s soft, flopsy blonde hair came in long enough to grab, I chopped off all my damaged, lifeless hair into the shortest bob I dared. From his spot across the room, sucking on his pacifier furiously, Gabe scowled at me. From then on, he was rarely seen without his fingers entwined in his dirty-blonde mane.
The second one--pica--is also something a lot of parents see. It is when your kid eats non-food items.
I remember a story my friend told me about when she was a little girl. She filled up a bucket with sand and started eating it. Her mother was concerned and wanted to stop her, but her father said she would stop herself when she realized how bad it tasted. When my friend finished the first bucket and went back for seconds, her parents intervened.
We all ate something weird as kids. I used to lick the salt lick before giving it to the rabbits, a fact that years later horrified my mother. My sister ate Playdoh, which most of us know how that tastes.
I think the distinction came in that Gabriel -only- wanted to eat non food items.
Every paper that I ever wrote notes on, every memo from the doctors, every IEP form--anything pertaining to Gabriel--I have kept in a notebook for reference. It actually helps, seeing how far he has come, and people request documentation frequently so it is good to have them on hand. Recently, I found the notes I had made for the dietician that came out to evaluate Gabe. On one side of the page is “Won’t Eat”, under which was written pasta, potatoes, meat (except lightly breaded chicken), and basically anything decent or edible. On the other side, I had written “Will Eat”, a list considerably shorter that consisted of fruits, fruit snacks, and chalk, cardboard, paper towels, books, mud, and rocks.
During the nicer days, Emerald, Gabriel, and I would spend outside in our lovely little backyard. I would prepare a snack and a drink so they would have something available while we were out there. Nothing fancy, but usually something like mandarin oranges and cheese sticks or pretzels and ham.
Even though he had real food--even sometimes preferred foods, like fruit snacks or candy--Gabriel would rather drink his water out of a stagnant puddle on the ground or sneak sidewalk chalk to crunch.
It was discouraging and often disgusting (I having only mentioned the more conversationally appropriate cravings of his unfortunate habit) because he was getting so little of what his body actually needed. We would go over to people’s houses where he would take bites out of their decorative candles and eat out of their dog food dish, then sit at their table refusing to take a single bite of real food.
I have so many stories about finding him eating things he shouldn’t; you would think that over time we would become immune to it, but he always seemed to escalate just enough to continue shocking and horrifying us for years. The real turnaround came when we started him on this medicine when he was 3. It has a side effect of significantly increased hunger. Almost overnight, his pickiness vanished--if you are that hungry, there isn’t much room left to be picky.
The final issue came the closest to breaking me. I felt like Sisyphus, damned to a lifetime of repeating the exact same tasks every day just to watch them roll back down for me to do again tomorrow.
A little known trait of autism: destructive tendencies.
Before Gaby was old enough to medicate, his body was more energy than he could physically contain. That came out in all sorts of ways, but the most common was destroying things around him.
In the living room of the old house, we had a book case. Four shelves, three filled with books, one filled with DVDs and video games. It was fairly lightweight, though the hefty tomes weighed it down a bit.
At least four times a day, Gabriel would go over to that bookshelf and flip it over, toppling the books and movies to the floor.
Four times a day? Why didn’t you just leave them on the floor until he went to bed and then pick them up?
Two reasons: one, dude still wasn’t sleeping all that much. When he slept, I slept, end of story. And two, because if I left it on the floor, he would escalate the damage--tearing pages out of books, opening DVD cases and snapping the discs in half, ripping the cases in two. If I kept picking it up, nothing got damaged beyond use, and it gave him something to undo again and again.
Same went for the toy buckets in the house. He would lift those up over his head and listen to the rain of the toys on the floor. This one I would make him fix. Gabe follows directions fairly well, as long as you stay beside him and keep repeating the request as often as he needs to hear it to complete the task. The bookshelf and the toys were not awful; frustrating, but easily remedied. Not everything was.
From the fridge, he would remove the food he so obstinately refused to eat and dump the contents on the floor of the kitchen and living room. Pitchers of tea, large bags of flour, crushed up chips. Once, he upended an 8 pound bag of cheese on the carpet. Before I could get the useable parts picked back up, he had grabbed my drink and poured it on top, rendering it completely wasted. We didn’t have food to spare, carefully budgeting precisely how much we would need for each meal and purchasing it all in bulk at SAMs with our once-a-month paycheck; no loss went unnoticed.
He was out of control during these times, completely without dominion over his actions.
I came in once to see him on the floor, eyes full of tears as he tried to put his VeggieTales book, his favorite book, back together after he had torn it apart. We had to take his indoor trampoline away when he snapped the metal bar in half with his bare hands, leaving sharp metal edges for him to injure himself on, and for days afterwards he would just go stand where it had been and not do anything.
As bad as it was for me and Michael--and frankly, it sucked the big one….it was so much harder for Gabriel. He didn’t want to be this way, out of control and emotionally precarious. One moment he would be fine, the next he would be crying so hard we could do nothing to stop it. Life was too much, too overwhelming, and I didn’t know how to help him, how to accommodate him, how to fix it. I didn’t know it at the time, but I was doing everything wrong, because everything you would do for a neurotypical child doesn’t work for him, can often make things worse. Singing when he’s upset, for example, or expecting and enforcing his sitting for an entire meal without getting up.
At the beginning of all of this, right at the first stop where we were getting referrals and starting therapies and researching these words we had never heard before, these behaviors...I didn’t know enough to recognize them as problems. I knew that everyone struggled, that all kids were different, and that everything is a phase. From a combination of young age, no mommy friends, no social circle with kids of similar age to compare to, I didn’t realize that it wasn’t supposed to be this hard. That I needed help, and that if things didn’t change, very soon I was going to burn out.
--Andie
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