For all the concern and criticism about the use of restraints in public schools on disabled students, sometimes it seems there’s no end to hearing about yet another school district that has improperly restrained a child. Yesterday’s McDowell News reports that a 14-year-old autistic student was restrained using a “belt-like device”—-a belt used to help students using wheelchairs in and our of their chairs. Jeremiah’s mother, Ann Watson, said that the school did not inform her about restraining her son and in this way.

She further said the system has purged documents that reflect poorly on the school system’s handling of special needs students.

Last month she began noticing that Jeremiah was nervous, unable to sleep at night, and unusually upset. He began having incidents at school, including wetting his pants. Then earlier in this month, she got a call from the mother of a student at East. According to Watson, the caller said her daughter was upset about seeing Jeremiah tethered and being led on a leash at school.

Jeremiah is diagnosed as suffering from autism, she said. She homeschooled him for a number of years after an earlier conflict with administrators over speech therapy and other services for her son, she explained.

Marion Police Lieutenant Scott Spratt confirmed there was a complaint on file, although his ability to comment was limited, due to it being “a juvenile matter.”

He said last week the incident “has been investigated and currently being followed up on.”
Associate Superintendent Mike Murray said last Wednesday that the accusation was frustrating.
“We don’t have devices,” he insisted. “We don’t use any torture apparatus or anything of the sort.”

A school employee who spoke on condition of anonymity told the McDowell News that an “inexperienced assistant in the class had used a belt to tether Jeremiah on as many as three occasions.” Sounds like someone with experience needed to step in?

The cost of treatments and therapies for autism and how to pay for them. The question of what is the best/right/appropriate “treatment” for autistic children and is an educational/behavioral method like Applied Behavior Analysis (ABA) really a treatment that should be covered by insurance companies, or is is something that school districts (under IDEA, the Individuals with Disabilities Education Act) should be providing? Who pays, or who can pay, or who should pay, for what—-and what about speech therapy, occupational therapy, and physical therapy? And while ABA is widely used as a methodology for teaching autistic children, especially younger children in early intervention, what about for older autistic children? Given the troubled history of ABA and behavior therapy, it’s contested whether or not it’s a “therapy” that should be used.

Today’s News-Tribune (Tacoma) asks Who should pay for treating children with autism? and describes an effort in the state of Washington to mandate insurance coverage for autism and related disorders, with these specific points noted:

• Require coverage for ABA-based treatments, along with coverage for medication, occupational, speech and other types of therapy – as long as they are prescribed by a licensed physician or a licensed psychologist.

• Prohibit insurers from dropping coverage of individuals with autism based solely on their diagnosis. Forough and other parents say this has happened.

• Remove limits on the number of visits an individual can make to an autism treatment provider.

• Cap benefit payouts for treatment of autism at $50,000 a year – a figure that would be adjusted for inflation annually.

While we haven’t always agreed with ABA consultants about the best way to proceed in teaching Charlie, ABA’s been the mainstay of my son’s education since shortly after he was diagnosed. We’ve tried other teaching methodologies and—while I’ve my own questions about what I’ll refer to as the philosophical underpinnings of behaviorism—ABA’s helped Charlie to learn. We were able to provide for home ABA when Charlie was young (our families were quite generous). After that, since he was about 5 years old, Charlie’s received most of his ABA through his public school classrooms here in New Jersey, where the emphasis is not at all about “recovering” or “treating” autism but, of course, on educating students to do as best as they can.

Some families have noted that insurance companies and school districts have worked together to provide treatments for autistic children. ABA provided by the public schools (and integrated into classroom settings) has helped my son’s learning. That’s been our experience and I’m not sure what is the best situation and there’s plenty of room for debate and dissent about what is the best and the right teaching methodology and classroom situation for autistic students (and some discussion about ABA as a teaching methodology for autistic children ensued on this post about Framing Autism).

Since Charlie had Thursday off from school, I took the train to work so he and Jim could have the car. Almost every seat was taken when I got on and I settled into a windowless row by the door. Neither the air-conditioning nor the lights were working. I put my coffee cup between my feet, pulled my bag (front pockets well-stocked with Kleenex and the other matériel one needs to get through a bad cold) onto my lap, and shut my eyes, and hoped I’d be able to keep my voice going through the day.

We three have been passing around this cold like a hot potato—Charlie first, then Jim and now me. Can’t say how grateful I felt that Jim could take care of Charlie on Charlie’s day off and that Jim was well enough to take Charlie on a long bike ride, on a very warm October afternoon.

Who will take of Charlie? Few questions run through my mind more. The question arises when I’m setting up my schedule of classes for the next year; when Charlie has a day off from school that I don’t; when I’m sick, or Jim is sick, or we’re both ill and worn-down. And what about when are older? Retired? With health problems of our own? And when one is on longer here to guide and be there, to protect and love?

How much of this worry leads people, leads parents, to wish they could ensure that a child with a lot of needs might be, would be, will be, okay?

The train was an express and took me all the way to Hoboken. I grabbed my coffee cup and pulled myself into the aisle. The words Special Needs Trust caught my eye: It part of the title of an article in what looked like the Wall Street Journal that a man in a dark gray suit was reading. I made a mental note to find the article later—–and here it is, with the title of An Estate Plan Built for Special Needs.

I’m making sure all of my family reads it. It doesn’t answer all of my questions, worries or fears about the future, but it reminds me that we can plan today to give Charlie what he needs tomorrow. And that, rather than try to wish away the future, we can face it and do what’s right for Charlie, today as surely as tomorrow.

6-year-old Luke Baehne has a 50-50 chance of survival after nearly drowning in an irrigation ditch on Tuesday, the Mail Tribune (Oregon) reports. Luke is autistic and was attending STEPS, a life-skills program through Southern Oregon Education Service District for children with autism or severe disabilities. He went missing around 1pm during recess at Jacksonville Elementary School and was found around 1.40pm by a teacher’s aide. The irrigation ditch is about 125 to 150 yards from the school grounds.

Many thoughts—many many—with Luke and his family.

Somewhat inevitably, I caught Charlie’s cold. Jim did too; both of my guys seem to be on the mend—Charlie was awake at five minutes to seven on Wednesday morning and ran out the door to catch the bus—while I found myself spending Wednesday coughing, sniffling, trying (trying) to clear my throat and drinking Airborne (which makes me feel briefly better when I drink it, but then it’s back to the Kleenex).

While he still had a cough, Charlie, by his teacher’s report, sailed through the better part of the day and happily polished off a lunch of chicken, Tater Tots, grapes and watermelon. I taught my classes, with many students—aware that the middle of the semester is approaching—saying “tell us what’s going to be on the midterm!” and “I’m scared!”. I made it home to greet the bus and the bus driver nodding and smiling when I checked with her about no bus Thursday (Charlie has the day off for Yom Kippur) and back to school on Friday.

The sound of me coughing and blowing my nose has long upset Charlie. When he was seven, he’d cry, or scream, or hit his head when I blew it. This of course made having a cold or allergies doubly trying; I used to take a deep breath and hurry to the basement to cough. About two years ago Charlie started to imitate my, ahem, non-verbal sounds of sickness with his own approximations. He’d do “Mom clearing her throat” and “Mom sneezing”, grunt or growl intently, and then grin. So now, when I feel a cough rising, I warn him and Charlie puts his hands over his ears.

Wednesday afternoon, Charlie had his usual large after-school snack (I guess it’s more like another meal) and then asked for a walk. It really was a lovely, warm autumn day and I filled my pockets with tissues and off we went, Charlie running ahead, stopping at the crosswalk and looking back for me to give the “you can go.”

Once home, I felt more light-headed than ever. Charlie slumped in a chair with his shoes still on. I picked up his blue fleece blanket and spread it on my lap; Charlie smiled and asked for the blanket, and took it, and did the same when I tried to use his big yellow one. I found another blanket from my bedroom, settled in a chair with a footstool, pulled the blanket over me, and told Charlie, “I have to take a nap. I’m sick. 15 minutes.” Charlie was in the other chair and looked right at me.

I must have dozed off for awhile because it was dark outside when I woke up. Charlie was still sitting there, eyes still on me.

Watching over me?

You bet—that’s my boy.

There are private schools for autistic kids here in New Jersey that have waiting list of a couple hundred kids. In Palatine, Illnois, the privately operated, public funded New Connections Academy has also had to turn students away for lack of space, the October 7th Daily Herald reports. The school serves “high-functioning autistic children and teens” and currently has an enrollment of 40; it’s hoped that 60 students total can enroll if the school is able to expand. The new space would include an art therapy room, two classrooms and offices, and increase the number of staff to 37. Notes Daily Herald:

Run by Libertyville-based Counseling Connections, New Connections is the only Chicago area school solely dedicated to students with high-functioning autism, according to Dempsey. It opened in December 2006 as an outgrowth of Connections Day School’s south campus in Palatine, which serves students with emotional and behavioral issues.

“There are many programs for lower-functioning kids, but the needs of this category of kids aren’t really being met by any existing private or public school,” he said.

But they could and should be.

Would an in-district special public school program be better than an out of district one that is, as noted “privately operated”?

The October 6th Arizona Republic describes a program developed by the Phoenix-based Southwest Autism Research and Resource Center to help autistic children “successfully fit into the often intimidating social mix of recess.” Autistic students are first taught board games or tag or other games and other students are brought in to learn to play with them:

“You are then positively impacting both the child with autism and the typical children because you’re getting these kids to be compassionate toward each other,” [Karen[ Donmoyer said. "It's not rocket science." [Donmoyer has 9-year-old twin daughters who are autistic.]

……

……many were surprised that most kids preferred organized games during recess over free play, said Daniel Openden, the center’s clinical director who began developing the new strategies a few years ago while a graduate student in Santa Barbara, Calif.

“The kids flock to you,” he said. “It’s like a magnet.”

What school officials noted immediately was a dip in the number of kids referred to the principal for misbehaving during recess.

Both in Santa Barbara and Scottsdale, the structured games attracted class clowns and the same kids most likely to bully, Openden said.

Dodgeball and surviving on the jungle that a playground at recess aren’t for everyone, and not only kids who are different.

We’ve had our problems with school districts and at (low) one point took Charlie out of school and homeschooled him for a month back in the fall of 2005. But things were always pretty local. In Louisiana, the St. Landry School Board is being investigated by the US Department of Education. According to WDSU news:

According to a letter from the office of civil rights, the department is investigating whether the board failed to identify Port Barre Elementary School students who need special education services, failed to evaluate students who qualified for services and failed to provide services for the students once they had been identified.

Concerns about the services provided for students with special needs have crossed into the district’s 43-year-old desegregation case.

The complaint originated with Port Barre resident and child advocate Bett Dedon, who contacted U.S. District Court Judge Tucker Melancon, who oversees the desegregation case, about her grandson’s situation at Port Barre Elementary.

Dedon’s grandson has an autism spectrum disorder.

This is what Dedon’s grandson is entitled to according to IDEA 2004, the Individuals with Education Act:

……..a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.

This is how IDEA describes disability at the very start of the document:

“Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”

Just to reiterate: All children with disabilities need to have “available to them” an education that is free, appropriate and public and their being disabled—autistic—-”in no way diminishes the right of individuals to participate in or contribute to society” in any, many, and so many ways.

This past Thursday in Virginia, a 24 year old autistic man was tazered by James City County police after he was to “become unruly with employees at Wilsons Leather at the Prime Outlets-Williamsburg shopping mall,” according to the Daily Press. It was only after the man was placed under arrest and charged with trespassing and resisting arrest that police learned that he had Asperger’s Syndrome.

Needless to say, incidents like these make training about autism for police and other first responders more than essential. The Daily Press quotes a James City Police spokesman, Mike Spearsman, as saying that the 24-year-old man was “‘rather large’”—-these are words that strike home with me more and more.

Almost every day someone comments to me that Charlie is “so big” or says “he’s taller than you!”. The words are meant kindly but, in practical terms, Charlie’s height and size (he’s the biggest in his class but the youngest in age), combined with his limited speech and communication skills (especially to strangers, especially when he’s under duress), can make people who don’t know him uneasy, even when he’s simply sitting on the subway and does not respond quickly enough when someone asks him to move over. It’s been some time since Charlie got very, very upset in public; it helps that we work a lot on teaching him to manage his anxiety and how he responds to it.

In the past, when Charlie got very upset and aggressed—not out of wanting, I have to emphasize, to hurt anyone, but because that was the response of his body under extreme stress, a kind of “fight or flight” response—personnel at a previous school placement had been instructed to use physical restraints to stop the behavior. What usually happened was that Charlie struggled more (especially when a basket hold was used) and things escalated. And, Charlie started to make it clear that he did not want to go to school: There were many occurrences of those types of physical struggles, phone calls from nurses and principals, bruises and tears. (At one point, Charlie threw his shoes out of the car window as I drove him to school—-a pretty clear message.)

That was a few schools and households ago and Charlie’s had his best school year ever. His teachers and therapists are trained in crisis management procedures and it always seems that the tallest aide (a guy) is assigned to Charlie, but it’s very, very rare that any sort of physical force has to be applied. Careful and highly structured teaching and carefully training, highly motivated staff have made all the difference for Charlie.

So it troubles me all the more to read about how often physical violence and force are used to “treat” or “discipline” autistic and disabled individuals. One of the most egregious examples is the use of “aversive therapy”—electric skin shock transmitted by a device called the Graduated Electronic Decelerator. A school in Canton, Massachusetts, the Judge Rotenburg Center (JRC), uses this highly controversial “therapy.”

Some parents swear that it has made all the difference in their children’s lives and theirs. Derrick Jeffries, who has Asperger Syndrome, and University of Delaware professor Nancy Weiss have started an online petition to call on the American Psychological Association to condemn the JRC’s shock therapy and other “aversive” treatments. In December of 2007, more questionable practices at the JRC were noted in an article by the Boston Globe. Back in January, a key legislative committee in Massachusetts considered a bill to decrease the use of shock treatment. A state investigation into the JRC was called after an August 2007 incident, in which a former JRC student made a prank phone call to administer shocks to two students. The May 15th Boston Globe reports that State Police were ordered to seize documents from the offices of the JRC related to that prank phone call:

The collection of evidence has to do with a yearlong grand jury investigation led by the office of Attorney General Martha Coakley, said Kenneth Mollins, a New York lawyer who has filed several lawsuits against the school and who said he spoke to a representative of Coakley’s office about the Rotenberg investigation. Mollins said he was told the grand jury is also examining possible financial improprieties by the school.

JRC officials say that they have issued “numerous safeguards” to prevent the August prank call from happening again:

The incident was caught on 24-hour surveillance tapes, which were shown to investigators last summer. The tapes were subsequently destroyed by school officials, even though investigators had instructed them to preserve the tapes.

After hearing about the destruction of the tapes, Senator Brian A. Joyce, a Democrat from Milton who has sought to ban shock therapy at the school, said he intended to ask the attorney general’s office to look into the matter.

More analysis at Club 166.

Charlie was able to tell me that he wanted out of his former school by throwing his shoes out the car window. But would a JRC student do, if they had minimal or no language or communication skills do?

Eat your breakfast and (if you’re an adolescent) you’re less likely to become overweight, according to a recent study in Pediatrics (March 2008) of adolescents from Minneapolis-St. Paul public schools (here’s a write-up in the New York Times, too.) Charlie definitely eats, and definitely needs, his breakfast—but he’s never ready to eat it before getting on the bus. He just does not seem inclined to eat on first waking up (well, I’m not either, though I need my coffee). I used to struggle to get him to eat something, and found myself picking up lots of waffle pieces and bits of cereal from the floor of my kitchen or car.

Just over a year ago, Charlie’s then-teacher—noting that he had started to ask for lunch around 10 o’clock and ate ravenously—-asked if we could send in breakfast. “He can eat it when he comes in to the classroom,” she said, very matter-of-factly. And that’s what Charlie has been doing ever since (and the middle school teacher has noted that this is fine with her). Everyone agreed that it was surely better for Charlie to start school with something in his stomach when he was ready to eat it, rather than insisting that he stick it out until lunchtime—-a small accommodation.

As they say, a good breakfast is the start to a good day.