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Sun - June 29, 2008Autism SensurroundDan is home for summer break. He has
been busily burning new
DVD's.
His abuse of DVD drives is legendary. Over the years, he stuffed so many dirty and damaged disks into the G5's internal drive that it finally gave up the ghost. For the last 2 years, if you try to put a disk into the internal hard drive it is never read, and makes noise which are the mechanical version of wailing and gnashing of teeth for an indefinite period, until that disk's time in purgatory has been served and it is released to go to disk heaven. So, it was no surprise when the external DVD burner gave up the ghost today. This necessitated a trip to acquire its replacement. I'll say one thing for going to the store towing a 13 year old with autism and Tourette's: you quickly see which store clerks have any awareness and self preservation instincts. The guys at the Apple Store scored very highly on these scales, meeting me at the door while swearing up and down that whatever I was looking for, they didn't carry it. (OK, in the interests of fairness, they only said that about external DVD burners.) The guy at the Mac store, however, was going to give me his full unhurried chatty customer service. Meanwhile, Dan went to the demo computers whirring on desks across the store. I Looked at Dan. I looked at the clerk. The clerk did not take the hint. He couldn't find a DVD burner on the shelf. He flashes a dazzling customer service smile, and offers to go the extra mile by looking it up in their inventory. He strides with purpose to a customer service computer, and ponders the responses to his opening keystrokes. Meanwhile, Dan has zeroed in on the computer hooked up to the Bose mega sound system, complete with satellite subwoofer. Earnest Clerk returns. He doesn't think they have any, but he is going to quiz Stockroom Guy, saying "our inventory database isn't the most intuitive." He disappears. Danny launches Safari. He types "Thomas" into the Google Search window, and uses the thumbnail video screen shots to navigate to the YouTube offerings of Thomas The Tank Engine videos. Earnest Clerk returns from the stockroom with the external DVD burner we so desperately need under his arm. He tries to patiently explain all its features as I happily interrupt him with, "That's just the one I was hoping you'd have. Let's ring it up!" I speed towards the checkout counter, hoping to pull him along in my wake. Too late. The opening notes of the Thomas theme reverberate through the store. The steam whistle blows. You know, with a really good sound system, it sounds just like you are really in a train yard. A rapid calculation ensues. I am at the checkout counter, and Dan is 30 or 40 feet away and very happy. Good luck has led the other customers to vacate the store before the performance started. It's just me and the employees. The calculation is that the best strategy here is to finish the transaction ASAP. Devil take the hindmost. To their credit, only 2 of the employees appeared to be in pain from being subjected to Thomas the Tank Engine at arena rock volumes. Earnest Clerk got full marks. He showed no clue that there was anything going on beyond him chatting about which of the three addresses in the customer database he should use and how they came to be, about the return and restocking policy and fee, and did I need a bag? I thanked him, went with the DVD burner to Dan and entered the keyboard commands to quit Safari, and walked with Dan to the door as peace and tranquility returned to the store. "Have a nice day! Thanks for coming in" was the benediction as Dan and I did the recessional out the front door. Somewhere there is a crowd of people who could read this story and be absolutely certain that this story is a shocking confession of failure to exert parental control of a child's behavior. I would be interested in seeing how any of them would do in a 15 minute matchup with a teen affected by autism and Tourette's. They have no effing clue. Posted at 03:49 PM Thu - October 11, 2007More Mitigated EcholaliaIt is always kind of fun when Dan's
mitigated echolalia kicks in, when he borrows a line from a movie to express
himself in ways he rarely can on his
own.
We call G-3 and talk to Dan on the phone on Tuesday, Thursday, and Sunday nights. Tuesday, I was talking to him on the phone. After some conversation, where he mostly echoed what I was saying or what the para was saying, he wanted to be done talking on the phone, but was being prompted to continue. He said: "This has gone on far enough." OK, I got the message -- and my best laugh of the day. Posted at 06:09 PM Tue - July 10, 2007Back To SchoolDanny's all too brief summer break
ended today. Bernadette flew out from Heartspring to escort him on the plane
back to Wichita.
It has to break your heart when the staff calls to tell you that he arrived there safe and sound, and that he is walking around saying the mantra, "Daddy loves you." I'm not sure when I've cried this much. Posted at 08:48 PM Sat - July 7, 2007Danny's (Brief) Summer BreakI think this blog has lost a lot of
readers, because there simply haven't been that many posts over the last 6
months.
This has a lot to do with the fact that Dan enrolled at a residential school in Kansas on 1/8/07. He had been out of school since October, when his expulsion hearing turned into settlement negotiations with a school district which just didn't know how to educate him. We collaborated with the district on a search for a school which could, and agreed on Heartspring. There were so many great reasons for not blogging about this. I think that enrolling my son in a residential school at a great distance makes me a pariah with some autism parents. Once I am not blogging about such a huge life event, writing about other topics seems trivial and false. Dan flew home for his summer break June 22, and flies back to school July 10. Since he has been home, I have found myself blogging again. With this has come the realization that there was a much more pragmatic reason that I haven't been blogging: supervising Dan involves pretty much constant supervision. I am talking about the same room, not the same building. As I write this, I sit in Dan's favorite room, which holds two computers, a television set with DVD/VCR player, Dan's drum set, and other attractive nuisances. Staring me in the face is evidence of what can happen when you leave the room to get a cup of coffee or go to the bathroom: a casement window with six of the twelve glass panes broken. Five of them were broken before Dan enrolled at Heartspring, one succumbed on this visit. I had repaired the three broken window panes in the living room, because they were visible from the sidewalk. But I digress. My point was that when you spend a lot of time with Dan, in a room with a computer, one of the things you CAN do is scraps of writing, which serves blogging well. When Dan enrolled at Heartspring, we suddenly had the option to be in other rooms. To move from one room to another at our whim. To leave the house. Blogging fell way, way off. Some regular readers worried and inquired. They found the blog silence disquieting. It was hard to reassure them that it was a good sign that I wasn't stuck in a room with a computer and a bad attitude. Heartspring is a wonderful place, and it has been very good for Dan. He has made good progress with his academic goals. He has gained a lot of independence which will alter the trajectory of his life for the better. He eats a lot more foods than Mac & Cheese, and has lost 55 pounds he needed to lose. He gets a lot of exercise on a regular basis. He is being taught regularly and systematically how to enjoy and function in community outings and settings. The main downside is that it is halfway across the country. There aren't many days left in his summer break, and then he returns to school. The day after he returns, we will go on a trip, and I won't have access to the application I use for blogging. When we get back, I think I will blog more about how an activist for inclusive education ends up with his child in one of the more restrictive settings possible.  Posted at 11:14 AM Tue - January 16, 2007And He Is On The School Board??This story ran on the front page of today's
Oregonian:
A Portland-area school board member faces censure tonight from fellow members critical of comments he made in December about special-education students. Ron Chinn, a member of the Multnomah Education Service District Board, during a meeting last month referred to special-education students as "a bunch of slabs -- slow, low and belows." The comments prompted the board to draft the resolution condemning his "derogatory and discriminatory remarks." During the Dec. 19 board meeting, Chinn made reference to a speaker at an educational workshop attended by board members. The woman had told her story about being considered a special-education student because of a physical condition. "They were going to put her in special education because she had a disability," Chinn said, according to a recording of the board meeting. "They were going to place her with a bunch of people that were low IQ'd, what I call a bunch of slabs -- slow, low and belows." Immediately after his comments, Board Chairwoman Janice Gratton said to Chinn, a 10-year board veteran, "Ron, I am sure you did not mean to disparage folks that are slow." To which Chinn responded, "It is simply a statement of fact." Posted at 10:31 AM Thu - January 4, 2007Dan's Quote Of The DayDan was looking out at the rain, and
quoted Tigger:
"Rain, rain, go away, and come again ... on some other guy." Posted at 09:24 AM Sun - October 1, 2006Sunday Morning With DanRuth and Lizzie (that's Elizabeth to
her mother) are at church. Dan and I are at home. The church told us that they
really weren't equipped to deal with Dan. This is particularly ironic for a
church which proclaims itself to be "open and affirming" to people with a
difference.
Dan is coming out with some interesting statements these days. For a long time, he was quite nonverbal. Under duress, he could use one word statements. Then, he got some two word statements, and some mitigated echolalia, using phrases he had memorized from movies. Lately, he has gotten some higher level communicating done, which we can miss if we don't listen. The other day, while heading for the bathroom, he became naked along the way. "You're naked," I observed. "You farted," he observed. First verbal argument he's won. Posted at 10:41 AM Sat - September 30, 2006That's My GuyHere's an image for
you.
At the mall, Dan browsed at the Halloween Store. After leaving, he pulled Ruth by the hand back to the store and directly to his choice, It was a very nice Roman sort of short sword, complete with gold plastic guard, grip, and pommel. When Dan got home, he shucked al his clothes except his Pull-Ups. He went into our rather eclectic hat collection, and found a sombrero. He then goes to the living room, and finds the plastic Luger shaped toy pistol he got from Bill Wood. So, the image: Dan, standing and watching TV, wearing only a Pull-Up and a sombrero, firing a pistol with his right hand and brandishing a sword with the left, while reciting the words of a Winnie-The-Pooh episode. This is something most people don't see every day, if at all. Posted at 09:47 PM Wed - July 26, 2006Mitigated Echolalia du jourWe're in the car, driving to the
annual church summer picnic. As always, it is at the home of a particular church
member, who has a lovely home and pool on the banks of the Willamette
river.
We have been going to this party every summer, with Dan, for many years. This year, as we turned onto the street along the river which leads to the house, Dan announced in his best Tigger voice: "It's PARTY TIME!" Posted at 05:50 PM Thu - July 6, 2006Intelligence Testing In AutismOne of my favorite divas sent me this link to an article about intelligence
testing in autism, about Meredy Edelson's examination of the basis for the
conventional wisdom:
As a professor of psychology at Willamette, Edelson is well versed in the literature of autism. One of its most commonly accepted tenets is that the majority of children with autism are mentally retarded as well. But when Edelson’s own research with autistic children showed otherwise, she began an exhaustive study of more than 60 years of autism literature. She discovered that most of the data on which researchers have based their claims are highly questionable, and in some cases there is no research whatsoever…. Because of autistic children’s limitations, Edelson didn’t test them with standard intelligence measures. Instead, she opted to use the Test of Non-verbal Intelligence (TONI). “This test involves abstract reasoning and does not require a verbal response, so children don’t have to be verbal or have prior knowledge of the world,” she says…. With the TONI, Edelson says, “The child looks at some stimuli and points to a pattern. Using the TONI, children with autism score significantly higher in intelligence than they do on other tests.” Psychology literature indicates that between 75 and 90 percent of children with autism score below 70 on standardized tests of intelligence, putting them in the mentally retarded range. Using the TONI, Edelson found the children scored approximately 90, which indicates average intelligence (average IQ range is from a low average of 85 to a high average of 115). Only 19 percent of Edelson’s children scored in the mentally retarded range…. Edelson decided to dive into the literature—to literally research the research. “I limited my research to English language reports and to studies that either made an overt claim about the number of autistic children who are retarded or had data from assessments of intelligence in children with autism,” she explains…. What Edelson found disturbed her. The assumption that the majority of children with autism are mentally retarded is based on questionable data. Worse, nearly three-quarters (74 percent) of the claims are not based on data at all. Of those, 36 percent never even cite the source on which they make the claims. “They claim, ‘The majority of autistic children are mentally retarded,’ but they don’t state where they get that information,” she says. “Then others cite those studies and end up perpetuating the myth that most children with autism are mentally retarded.” Even more egregious is that 8 percent of these nonempirical studies make false claims about the studies they cite, and 21 percent inflate the data from cited studies, reporting, for example, that a study found 80 percent of children were retarded when the rate was actually 70 percent. When Edelson reached the end of the citation trail, she discovered 53 percent of the non-empirical studies did not trace back to data. “When I traced these citations back, more than half the time, there were never any data at all.” … When Edelson untangled the studies, she found “many of the studies did what I call ‘equating untestability’ with mental retardation. If the researchers had a child they couldn’t test, they just assumed he or she was retarded and assigned a very low IQ score, like 25. Others do a little bit of everything but aggregate their data so you can’t see what is valid and what isn’t.” Her final determination: Researchers have made a sweeping conclusion, one that impacts thousands of children and families, based on faulty data or no data at all. “The autism field has accepted as fact that autistic children are retarded. There are so many claims and they’re so widespread that no one has bothered to look at the data behind them. There is not a lot of data to support the claims, and the data available are 35 to 40 years old and are based on measures that don’t even measure intelligence.” Because retardation in autistic children has been so widely accepted, Edelson says schools and parents have lowered expectations of these children. “If we believe that vast majority—75 to 90 percent—of autistic children are retarded, we’re not going to challenge them. We’re not going to give them opportunities.” The full article is well worth reading. Posted at 09:54 PM Sun - July 2, 2006Clothes Make The ManDan climbed dripping out of the
bathtub, looked at me, and
said:
"Quick! The hero suit!" Posted at 10:47 PM Tue - June 27, 2006Not Every SisterSiblings of kids with disabilities may
develop some special
skills.
Elizabeth and Dan were in a swimming pool with several other kids, including a couple of toddlers. A pair of older women entered the pool. One of them recoiled in horror and announced loudly, "Everybody out of the pool! Somebody pooped!" Not every sister would do what Elizabeth did next. Without hesitation, she hooked a finger in the back waistband of Dan's swimsuit, pulled it out for visual inspection, and loudly announced: "It's not Dan!" It turned out that the object in the pool was a leaf. Posted at 08:00 AM Sun - June 18, 2006Mamas, Don't Let Your Babies Grow Up To Be CowboysDanny got into some of my ammunition,
and dumped it out. Ruth and Elizabeth sorted them all out. He dumped it again.
This time, Ruth was a little more casual, and sorted them into big ones and
little ones. Today, I found out what happens when you load and fire a .44 Magnum
cartridge in a .45 Colt
revolver.
Posted at 04:35 PM Sun - May 28, 2006Dan Wants A TripDanny really wants to go on a
trip.
For a week now, he has been packing. He's gotten the big duffel bag we pack for family trips, and he has started putting clothes in it. Just now, he went into the basement, got an armload of clean laundry, and carried it up the stairs to the duffel bag. The only problem is that he hasn't told us where we are going. Posted at 05:58 PM Sun - May 14, 2006The Autistic Mind Never RestsResearchers have looked at the
activity of the brain of neurotypical people when their brains are active or at
rest, and have compared that to the activity of the autistic
brain.
They have found that the autistic brain never rests. This may explain why those supervising the autistic brain rarely rest, and frequently pay the price when they do. Posted at 07:21 PM |
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