As a result of not having a lot of spare time, I'm going to make a quick update, then post the paper I had to write for my college English class. It'll sound familiar, it's about the day in the food court at the mall where we saw the 15 year old with autism and his poor exhausted mom. Heavy on the fluff, forgive me. It was creatively tweaked to sound better than my normal writing style!
Anyway... Finally got an IEP date and time, assuming it's not changed up on me again. It took a month to get this, which is ridiculous, but we have it. I'm not looking forward to it, but I'm very lucky in that I'll have a couple people there who can help me out if I get too flustered to make sense.
Jaymes has another hearing test a week from today to determine how much he hears, and if he needs hearing aids. We'll see what happens there.
School is going really well. I like it a lot, although the social interaction part is really scary for me and the walking around is hard on my still sore hip and back. I got a 93 on my first psychology quiz, and am doing really well with math too. Math was the thing that worried me the most, so I'm feeling much more confident. English... I haven't decided. I like the teacher, I think she is hilarious and she did feed the class candy last week. I'm not very fond of the "writing process." I like to just write. My process is as follows: write, write, rewrite, rewrite, read it aloud, rewrite. Sometimes I just write it, like I did with the first paper I turned in (the one posted below). I'm not really the type to outline and put so much planning into it. Writing is a creative process, not one that needs to be careful built in bits and pieces. I don't know.
In other news, I ran out of Percoset again, and that sucks because I'm still in a lot of pain at night. It hurts to lie down, and to get back up. I don't sleep well in pain, so I'm dead tired most of the time. I have half a pill left for tonight, then I'm not sure. The doctor won't see me until November, so I might have to go back to the ER for a refill.
I lost 5 pounds, which makes me very happy. I'm still fat as a cow, but it's progress. I'm exercising as much as I can, but if I push it, I get so stiff and painful I cant walk without the crutches at night, so I have to be cautious about it.
That said, here ya go...
Food for Thought, Courtesy of the Food Court
As a mother of an autistic child, I tend to look at situations in public places with a little more depth than the average person might. For example, if I see a child screaming and flailing on the grocery store floor, my mind immediately jumps to the possibility that the child might have a developmental disability of some kind, rather than thinking “wow, what a spoiled brat that child is! His mother should smack some sense into him.” Parenting a special needs child and spending large amounts of time with special needs people of all ages has given me a different perspective. I’ve also found that I can “see” autism in children around me almost immediately, and unconsciously. I have great respect for this extra bit of perception, and consider it to be a valuable gift because it enables me to respond appropriately, and to help others understand something they otherwise wouldn’t.
It was a typical Saturday. My husband and I, along with the two kids were headed out to the mall in Winston for a lunch out and a little window shopping. It was exactly the kind of day I love best: rainy, grey, and quiet. The mall was not all that crowded when we first came in, which is always a godsend where my son is concerned. We walked through the parking lot, both kids excitedly bouncing around and Jaymes doing his signature “Jaymes babble”. Something about the harsh light given off by fluorescent bulbs, and the way it shone off the polished tile floors has always been very calming to my little guy, and he was at his best that day.
From the walk into the mall, to the elevator ride, to sitting down in the food court, Jaymes was a model citizen. There was no frenzied head shaking, no spitting, and no bloodcurdling shrieks. He sat peacefully in his chair and ate his lunch. As a result, I was able to sit peacefully in my own chair and eat my own lunch.
As I was enjoying my heaping Styrofoam box of teriyaki chicken, I noticed a commotion across the food court. At first it was just a couple of people turning, then it became a cacophony of chairs scraping and voices as people saw the disturbance and began to comment aloud. Some wanted to call security; others wanted to call the police. The cashier at Sonic pointed and laughed.
In a perfect world, the sight of an obviously disabled person would not cause ripples of laughter and haughty indignation in quite a few of the occupants of the food court. However, this is obviously not that perfect world. As the fifteen year old boy ran toward the arcade, flapping his hands and making loud squealing noises, the bystander’s noses wrinkled in disgust and twisted mouths spat the word “retard” and “freak” just loud enough to be audible to the exhausted mother and sister who were trying in vain to contain their charge. Two small women can only handle a much larger male for so long, and eventually the boy tore from their grasp and bolted into the arcade. There, he stopped and made a series of loud grunts, followed by the removal of his shirt. The shirt was in tatters anyway, but I guess a shirtless fifteen year old African American boy was offensive to one gentleman, who felt the need to jump up, curse loudly, and move the contents of his tray to another table. The boy’s mother and sister finally did catch up, and started to lead him away past our table.
I seized the moment to say hello and ask if her son was autistic, the answer to which was obviously yes. She was tired. You could see it in every line in her face, and in the sweat that shone on her forehead. Her hair was sticking out sideways, her shirt slightly torn, no doubt as a result of trying to keep a hold on her energetic son earlier. In spite of this, she was proud, and unashamed. At that moment I really felt that connection… It is one that crosses between cultures, age groups, economic classes. I understood her exhaustion, and her humiliation, but instead of feeling sorry for her, I felt this overwhelming sense of admiration and pride at her being able to come out in public and not feel shame. To demand her son’s right to be there, despite the cruel words and harsh glares from people who either could not, or chose not to understand.
People like this woman inspire me, and remind me why every day I continue to fight for my son. Society in general can be cruel and the desire to stay at home and avoid the lack of understanding is strong, but the only way that any of us can create a world that will embrace people without regard for their differences is to create our own place, and help teach others to show our children the respect they deserve, even as they age into adults.
I suppose the moment felt longer than it really was, because as her son bolted, the nameless mother said a hurried goodbye and took off after him. A couple at a neighbouring table who had originally insulted the autistic teen leaned over and apologized to me, then they thanked me for saying something and helping them to understand what was going on. I had not spoken a word to this couple, but by overhearing the conversation between myself and this other mother, they had gotten the point, and it proved something to me. Most people aren’t intentionally cruel. They simply have not been there for the things we may have experienced, and by sharing our own stories and our own experiences, others can develop an understanding and choose to join our cause and embrace the differences. It’s a beautiful thing.
We finished our meal, and walked to the cookie shop to get a purple dinosaur cookie for each kid. The entire time I found myself feeling very grateful to Jaymes for being so wonderfully calm that day. It occurred to me that I should strive to be more like the nameless mother in the food court. A courageous soul who walked into the line of fire, head held high, and came out exactly as she went in.
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3 years ago
2 comments:
Thank you for writing this essay about how your 'autiedar' shines and shows up.
Maybe a shirtless fifteen-year-old American boy would be scary. But I have seen scarier in my time. And so many times fear is invisible.
that made me cry! that was so nice! my two older kids have bipolar disorder and have rages sometimes in stores. i remember my mom being kicked out of the local target store because of my son acting up! thank you for sharing that story!
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