Wednesday, June 29, 2011
Life with AB
I have decided that 10 year old boys are awesome. Well, mine is anyway. And no, you can't have him so don't ask. Neither will I trade.
On cue with his rapid onset of puberty has been the rapid onset of self-awareness and curiosity about the world around him. He's always been curious, asking random questions day and night so that I often hear myself declaring, "you've reached your question quota for the day, son!". Lately, however, his questions have more substance and at the very least quick wit and planned humor.
He is SO much fun!
Here's a brief window of life with AB.
Skipping into the room, swinging his arms in tandem, backward, then forward then bumping the closed fists together in front of his belly button over and over, he called out. "MOM! Mom." He was still standing 15 feet away, having just entered the kitchen, his toes barely touching the linoleum. I was standing at the kitchen sink, running water, the dishwasher was on and the window AC unit over the sink humming while the washer and dryer in the laundry room, three paces away were running. I could hear nothing other than the cadence of his voice.
"Son, please come TO ME to speak."
"But mom. Mom. Mom this is a good question. Mom. Mom. MOM. MOM!"
"Son, come TO me."
He grunted and skipped to me, still arms swinging, fists bumping and he stopped just at the kitchen counter. He began pacing side to side. (If you don't love someone with an autistic spectral disorder, you can't appreciate the notion that for them, speaking requires full body movement.) "Mom. Mom. NOW? Can I tell you NOW?!"
"Son, say, "Mom, can I tell you something when you are ready?'"
He sighed. He knows he has to rehearse the social cues but really doesn't see the point. After all, I'm standing right there and since I've never said otherwise, he's assuming my ears are still working. I prompted him again. "Mom can I tell you something?"
He looked at me with one of those if i didn't love you so much I might want to hit you looks and then mumbled, "momcanitellyousomething."
"OF COURSE!" I said enthusiastically and turned my whole body to face him and looked straight in his eyes.
He resumed the rocking and the pacing and the stimming and true to form, touched the top of his head with his right hand before speaking, as though he is touching an imaginary button up there that makes his thoughts come together as words. "Mom. I was thinking."
"What were you thinking in that great big Jimmy Neutron brain of yours?"
He stopped moving, processed my joke and then let out a half chuckle. Then without missing a beat, "mom, what if they could just, uh, um, what if they could just, just, what's the word, mom?"
Sometimes he gets stuck in his thoughts and it's so hard to navigate his thought process when he's given me so little. "tell me who 'they' are."
"Oh yeah, that's right. The doctors." Back to pacing and fist bumping, the rest of the thought came tumbling out. "What if the doctors, um, uh, you know, if they could just um, do a something where they put her to sleep and they do stuff, what's that called?"
"yeah, that's it, that's right. Surgery. What if the doctors did surgery on her brain and they took out the part of her mind that makes her be bad and then she would wake up and be good."
"You're thinking about Sissy?"
"Yeah. Can they do that mom, can they? I just want her to be good and then she can be in our family and it will be ok. OK? So can they?"
Of course, after a thought like that, I had to gather myself for a second. "Well, your idea is a good one. Unfortunately, it doesn't work that way."
"The brain isn't made that way."
"oh." And he turned to walk away.
"You're a good brother for thinking so hard about how to help your sister. And I'm very proud of you."
He hugged me and kissed me and skipped away, swinging his arms and bumping his fists but not before he touched the top of his head, I presume, to turn off his imaginary speech button.
Every conversation with AB is like this. He'll be stoic, silent, refuse to interact or say anything to anyone, even when asked a direct question and then out of the blue, he comes bumbling up to me with some thought or idea that he has been stewing on for God knows how long. Once I asked him, "Son, how come sometimes I ask you questions but you don't answer? Do you hear me? Are you mad? Do you wish I would shut up? Are you annoyed with me? Or do you just not want to say?"
He got a slight grin but never made eye contact with me as he mumbled his answer, "I just don't want to say." I think it was funny to him because I figured out his secret. He hears all and knows all but most times, he'd really rather not engage.
Unless it's about food. Don't mess with his food. He will be angry, irate and has had meltdowns and rages if you rebuff or attempt to alter his dietary habits. In addition, he's a "food bolter", a typical eating condition for persons with F-G syndrome. He will shove food into his mouth fast and without taking the time to properly chew, filling his mouth to full and then attempting to swallow. i don't wish to say how many times he's choked. Or wretched on food that had a sensory texture he couldn't endure. Meal times with him are always interesting.
Mornings are also a time of battle. He doesn't want to get up, sees no reason why his mother insists on waking him every day, typically ignores me until I mention breakfast and in general, it's a test of both our wills that usually ends with him staunchly cocooned in his spiderman blanket while I return to the kitchen to bang around some dishes to blow off steam. Except the other morning he arrested the angst in ten seconds flat. I was still putting away dishes assuming he was rolled up in his tight little ball when he surprised me, standing at the kitchen counter, dressed and stimming. I'd already prepared his breakfast and morning medication and apple juice. It was sitting on the counter waiting for him. He began taking his medication and then, mouth half full said, "mom, is there a pill?"
Thinking he was talking about his morning meds and wondering if I'd missed one, I stopped with the dishes immediately and went to him. "A pill? Did I forget one? Did I give you Sissy's meds by accident?"
"Huh? what are you talking about?"
My turn to be confused. "well, you said 'pill' while taking your medicine so I was confused."
"Oh. No, it's not that kind of pill. I mean a pill."
"A pill for what?"
"To fix it."
"A pill to fix what?"
Exasperated with me for not reading his mind, "Is there a pill to fix my autism?"
Once again, I found myself taking a deep breath and being amazed by my little man. "Well, bud, I'm sorry. There isn't."
I explained how I have thyroid disease that will never go away but my medicine helps my body work better just like his autism will never go away but his medicine will help his mind work better. He was not enthused by my explanation. "Sorry bud. I wish I could fix it for you." He hugged me and kissed me and took his breakfast to the table.
Then yesterday he made me laugh. "Mom. How dumb is she?" This he said with a mouth full of food. Oh, and did I mention he has a speech impairment? So full mouth, food bolting, speech impairment, stimming and random questions and thoughts. It's a whole lot of fun talking with this boy.
"how dumb is who?" Thinking he was referring to Sissy.
Now, it's no mystery. Our black lab, Gracie, isn't very bright. She's sweet, she's beautiful, she's fun to be with but she's not smart. At all. I laughed. "Well, by 'how dumb' what do you mean?"
"you know. Like in percentages. Yeah, how dumb is she in percentages?"
Chuckling because he used a word like percentages, I quipped back, "I have no idea. What do you think?"
He smiled and said, "I think she's 80% dumb. yeah. that's it. 80%." He chuckled at his joke and looked to see if I had got it and was laughing too. Which of course I was, how could I NOT find that hysterical. I think he enjoyed more that I was laughing at his joke than being proud of himself for thinking it up. One of these days I'm going to capture his laugh on video. His laugh is the single most amazing sound in the universe.
Such an amazing boy, he drives me batty sometimes but he makes up for it quickly when he's talking or being silly. His new game at the pool (and then at the lake off the dock yesterday) is to take a running leap into the water while posing in a crazy samurai ninja type move while shrieking in some quasi mode. It's hysterical to see but I always get a little nervous because I can hear him laughing at himself underwater and I'm worried he'll choke! lol Mothers. We're so annoying. We take all the fun out of things.
Right now his biggest struggle is riding in the van. So for the rest of my readers that are parents of spectral kids, these suggestions may help you as they are proving to be ingenious ideas for our little man:
#1 - assigned seats with head rest covers that "mark" their spot. The kids all picked out their fabrics for their head rest covers which are easily removed for washing or reassigning seats. AB likes it because it makes it "HIS" seat.
#2 - a small white board and a few white board markers. On it I write the following: Going to *fill in destination*
Arrive at *fill in estimated time*
AB has access to the markers so he can darken in the words or color it or whatever suits his fancy. It helps him keep track of what is happening and minimizes his anxiety about travel.
#3 - goes along with the whiteboard, he has a battery operated digital clock that has a built in light to see it in the dark. I've set the clock two minutes faster than my van clock on purpose. In the event that my timing is off for our estimated arrival time, the two minute differential will either cover my butt or make it appear to him as though we've arrived early.
This also minimizes his anxiety and helps him feel like he has control.
#4 - his own house key on a lanyard that dangles from the clothes hook above his head. One of AB's biggest triggers is the fact that I do a quick clean sweep of the van every time we arrive home to keep it decluttered. As a result, I'm always the last to the front door to unlock it. There have been many times that AB has run to the front door before the van is in 'park' in the driveway, banging and screaming to be let in. Now with his own key, he has autonomy. he hasn't actually said so, but I think he is really proud of it.
#5 - a van stash of vistaril and capri suns to dose immediately should crisis arise. Which it does. Often.
Coming up for the van:
#6 - earmuffs such as the kind that air traffic controllers where on the tarmac when directing planes to take off or park. There's a lot of noise in the van and it makes it hard for him.
#7 - a map of the local area and mapquest maps for longer trips so he can follow our path. I've tried a GPS but since it's on the front dash, it became a nightmare because he couldn't see it. LOTS of screaming about that and mom has a van rule: no screaming in the van or mom pulls over and turns off the van. I've done it. MANY, many, many times.
#8 - mandatory mp3 player with his aresenal so he can have a private music selection.
#9 - keeping the weighted vest in the van. He doesn't wear it at home anymore but I think it will help him a lot.