So, here is a brief clip of A Day in the Life of Cartoon Ranger, Autistic Six-Year-Old Kindergartener: Is awakened at 6:45 a.m. from a slumber that has been a little restless as the morning has drawn on. He sleeps on a queen-sized air mattress on the living room floor because his own room has sounds that are too immediate and kept waking him up. (The A/C, cars driving by, and the white-noise-maker we got for him bothered him too much.) After a few promptings, he tells me what he wants for breakfast (waffles and juice, pretty much every day) and then I ask him if he wants long pants or short pants for his school uniform. He may choose and I get his clothes laid out for him while he's eating. Eats, dresses, and is just now demonstrating his ability to brush his teeth on his own. Has also begun being able to get his shoes on by himself. (It wasn't tying them, it was understanding how the feet fit in the shoe that was troublesome. He's got it, now.) There is a lunch menu that comes home every month from school. Together, we read it and he writes "buy" or "home" on each day of it, depending upon whether he wants to eat what's being offered at school or not. He buys lunch an average of three days a week. The other days, he brings lunch from home. He generally chooses a peanut butter sandwich or beef bologna as a "main course." Always with a side of Pringles and apple sauce. 7:20 and we are out in front of the house, with a lawn chair. We do our "border walk" before the bus comes. This involves us walking from one side of our yard around the boundaries of it and up and down the driveway...sometimes backward...and returning to the lawn chair. We then wait for the bus. 7:30 and he is off to school. Surprisingly, being on the bus for an hour and fifteen minutes doesn't bother him. 99% of the time, he is happy to get on in the morning and has a good trip to school. In Kindergarten, he has a silent little alarm clock on his section of the desk-table in his class. He also has a daily routine described in pictures and words (more in words as his reading is improving) so that he always knows "what's next." There are eight students in his class and three teachers, at present. His IEP has him in first grade accelerated math at this point and he often goes to the 3rd grade class for reading. But he has to earn that, through good behavior. He is on the accelerated reading program with the school's library. But...he won't read books to me at home. Go figure. He likes art, hates going to music, and "tantrums" (his verb) every day at school. We are working on trying another type of system for him, because he is a smart kid and bribes will not compel him to do anything. It's very frustrating. I get an email from his teacher every day while the class is at "specials." (PE, music, art, etc). In it, she shares about his behavior that day, so we can reward or withhold rewards at home depending upon our current system. She shares what cool thing or unusual thing he did that day. I write back immediately or the following morning after CR has gone to school. He gets on the bus to go home at 3:20. Some days, he has good rides home. Other days he pitches a fit (his usual bus has been taken out of service and he has decided that he doesn't like riding this one in the afternoon, so he completely loses his brain, throws things, kicks, etc.) until he is strapped in to the uber-safety harness. OR he will have a really good bus day and is allowed to have an ice cream sandwich, handmade by mom, when he gets home. The bus trip home takes approximately 20 minutes. It can be, I am sure, a very long 20 minutes for the bus driver and her assistant. Once home, he throws himself on his mattress and divests himself of his footwear (if perchance he is still wearing it after the bus ride) and has a snack of some sort. This is the calm time. It can last anywhere from five minutes to half an hour. After the calm time, he starts on his daily routine of wanting stuff to happen that he knows cannot happen and wanting to buy things he knows we cannot buy and do things he knows he cannot do. I am not sure why he does this. It only makes him angry and upset. I make sure he understands whatever it is and then I change the subject, try to distract him with something (clay, drawing, washing machine videos, whatever) and if he persists, I try to ignore him. Going so far as to tell him we are not talking about this and Mommy is going to wash dishes or do laundry or something so that is that. (Of course, we have near daily behavioral problems associated with this difference of opinions. Whether it's whining or a full-blown tantrum, it can be draining for all of us. <smile> ) If he was good during his specials at school, he earns video game time at home. He often enjoys playing with the Play Station games. Big Brother Cyclone is the most tolerant brother in the world as he handles his brother and the gaming consoles. But when even Cyclone has had enough, he is permitted to lock himself in his room. Little Brother then has to find something else to do. All afternoon and evening, he checks the calendar, reassuring himself of the order of the next few days. He tells time (analog and digital) and is aware of the family television preoccupations (Beauty and the Geek, last night) and can Google Search his favorite things all on his own. He is a terribly horribly picky eater and dinner is a trial. I try to present him with a selection of food-pyramid-based alternatives and he chooses what he wishes from them. I have recently changed plates from the dinosaur-kiddie plates and Finding Nemo-esque themes to some other patterned stuff (not character-themed, but just decorative) I found on sale at Albertsons. He took to the change without too much complaint. I was relieved. Bedtime (about 10 or 10:30) is preceded by the "hearts and flowers" candle (it's electric with the faux-flickering-flame thing) being set by the air mattress. We talk to God, then he chooses whether he wants a story or a song first. Then he chooses what the story is about. (Lately, they've all been about people buying big houses with elevators and three floors including a basement.) I sing. OR... Because he's like this.... Sometimes he wants NO story, conversation or song. He just wants quiet. Which is welcome. Thing is, he wants me with him while he falls asleep. For this reason I, too, have an air mattress in the living room. On those nights, I am often asleep before he is. I wake up, hours later, with an electric candle flickering nearby and a slightly snoring son who may or not may not wake up asking for Mommy before too long. Overall, he gets a good eight hours of sleep a night. Usually. Finally. <smile> He cracks jokes, gives tours of the house's electronic appliances, relabels all the appliances with sticky notes, writes names of rooms (Custodial, Elevator, Women's, Men's) on 3x5 cards and tapes them to the doors. He likes to pretend he's grocery shopping with me so we play "grocery cart" and pretend to run through the market, swerving this way and that to avoid people. (This, for me, provides great exercise. ) He goes through his train phases, Lego phases, elevator phases and castle phases. He is currently waiting for me to clean the Honeywell fans from their garage dust so he can use them. (The other fans, for whatever reason, are not acceptable at this time.) Through it all, he's learning, growing, becoming gradually more independent (which is my ultimate goal for my children, insofar as I can help), and draws washers with an approximation of foreshortening, which is great technique. (I cannot draw anything decently, so he picks this up from the pics he finds on Google.) His teacher thinks he will one day be able to get a regular high school diploma. I don't doubt it for a moment. I just wonder if my hair will be any shade but gray by the time that happens. ;)
I saw the hour-long special "We Have Autism" on CNN this afternoon. Some of it brought tears to my eyes. Not about the kids, though. Seeing little ones who were working with their sensory integration while painting their hands to seeing an adult who had found expression -- poetic expression -- through a keypad and pencil and paper because he couldn't speak.... Well, that was just cool. Wonderful. Beautiful. No, what saddened me was the way that all but one of the parents confessed to a horrible, shell-shocked, brick-in-the-face feeling when they heard their child's diagnosis. One mother, in China, shared how she thought (though it horrifies her, now) of killing her child and committing suicide, because she couldn't bear the thought of the "terrible life" her child would lead. That brought me to tears. Other parents shared their initial hopelessness, the fears, the utter ignorance about what to do to 'fix' the problem. Thing is, of course, one doesn't "fix" anyone who has Autistic Spectrum Disorder. One just sees the current limits and teaches the autistic person how to see beyond and around them. Or even, just to want to see. As I've described it before, in my mind, a person with autism has some bridges out in their brain. We can't put those bridges back. All we can do is show them where the stones are, show them as well as we can and then help them to understand what's on the other side. And when they're ready, we help them cross. Please, if you or someone you know is new to this life of being "the family with autism" -- please know that it is not a bad thing to be so "labeled." Doors will open (with some tugging) and help can be found for someone with ASD. Truly, it is helpful to know what's out there and where help can be found -- even if it means reading books and becoming your child's personal therapist. The financial burdens can be rough (for an example, a simple cavity at the dentist means a trip to the hospital, general anesthesia, medical attendants, surgical prep and so forth, which adds up!) beyond the costs of speech or physical or occupational therapies. But there is hope out there, and assorted grants and other options open to families who are living with autism. CNN will be repeating this show sometime tomorrow, I believe. Record it or TiVo it or whatever it is you do, and share it with folks who could benefit from seeing it.
People say, "Patience is a virtue!" As if the ability to merely sit and wait is something to be prized. Now, I'm not knocking this, of course. It is something to be able to wait. But "sitting and waiting," is just so passive. The idea is abhorrent to many who would be actively "in charge" of their lives. Thing is, patience is not "sitting and waiting." It's not. Patience is bred of the ability to see things clearly for what they are and to know the limits of a situation, or of oneself, and to act in a way that is appropriate to the situation.
