“Figuring out his signs, it’s like watching a third-base coach.”

Says Brian Rattner about his oldest son, Jarrett, who is 13 years old and does not talk or walk. An October 23rd New York Times article describes Jarrett’s bar mitzvah last Sunday, and how his parents came to focus on “who Jarrett was and what he could do”:

When he wanted a ball, he would pound his chest until he got it. “Sometimes, he wants to communicate so badly, you can hear him from the other room pounding his chest,” Mr. Rattner said. “There’s a lot of emotion there.”

He is good at making eye contact, and his mother noticed that if she asked what he wanted for lunch — turkey? tuna? chicken? — he would say yes by blinking his eyes and then holding them closed an extra second.”

Hence, that need to learn to “read the signs” like a third-base coach—-something Jim and I have tried to do to understand how to communicate with Charlie on his terms, in the language he’s trying to teach us.

Senior Matt Farag has a “zest for learning,” today’s Gatehouse News Service Reports. Diagnosed at 6 with autism, Matt

…..will browse the encyclopedia and history books in his St. Charles home, memorizing notable facts and dates on history, dinosaurs and insects. Matt also can name each of the presidents and vice presidents in order and their middle names.

My son Charlie doesn’t do this—-reading’s been a long-time challenge for him—-but he too has a deep-running “zest for learning.” The word “student” comes from the Latin studere, “to be eager, to have zeal”—-and no better example of true students than Matt and Charlie, if I may say so.

The parents of a now 9-year-old autistic boy who was left for approximately 4 1/2 hours on a schoolbus have filed a lawsuit against the schools, the district’s board of education, the bus driver, and the aides. As reported in the August 1st MyCentralJersey.com, on July 7, 2003, then 4-year-old Tyler Mellito, 9 (now of Chambersburg, Pa) was not taken off the bus by the aides or by the driver, and was left restrained in his seat and locked on the enclosed bus:

The suit claims that as a result of the carelessness, recklessness and negligence of the defendants, Tyler suffered great pain and suffering as well as sustaining severe and permanent injuries, mental anguish requiring medical attention at the time and into the future.

The parents also claim that the defendants’ actions deprived them of the services and companionship of their son, and are seeking damages, punitive damages, interest and legal costs.

When I read stories like these, my thoughts go first to what it must have felt like to be a child, trapped on a locked schoolbus on a summer day, having seen everyone get off but oneself—-and then to what I as a parent would feel if this happened to my child. How could this have happened?

“What Tim eventually said….was that he didn’t want to go to school because he thought the school was trying to kill him.”

John Miller, a podiatrist in Allegany, N.Y, says this about his 12-year-old son, who has Asperger Syndrome, and who was, according to a July 15th New York Times article, held down prone on the floor by teachers (one time for 20 minutes) when he was “confrontational.” The NYT article discusses something that is too familiar to me—and to parents of special needs children—-and that is, one suspects, a bit more than shocking to many. Kids coming home with bruises on their wrists, arms, legs: That’s not supposed to happen in public school, and not at the hands of teachers.

Well, it does. In our previous school district, the basket hold was used so often on Charlie that —for years after he left the school district—-he used to pretend to restrain himself, as if he’d learned, that’s how to get attention. It’s not surprising that Charlie’s body freezes up and his anxiety and anger rise to the roof when even a small amount of physical force is applied to him now. NYT article states that “psychiatric facilities and nursing homes are generally far more accountable to report on such incidents than schools”—-we were not told that the basket hold would be used on Charlie. We were simply told that it had been.

Charlie was in a self-contained classroom for autistic children when all of that occurred; the NYT article reports that such physical restraints, and also time out rooms, are being used on children who are in mainstream classrooms, and that the use of such restraints is increasing:

In dozens of interviews, parents, special education experts and lawyers who work to protect disabled people said they now regularly heard of cases of abuse in public schools — up to one or two a week surface on some parent e-mail lists — much more often than a decade ago. “In all the years I went to school, I never, ever saw or heard of anything like the horrific stories about restraint that we see just about every day now,” said Alison Tepper Singer, executive vice president of Autism Speaks, a charity dedicated to curing the disorder.

The issue is politically sensitive at a time when schools have done a lot to accommodate students with special needs, and some have questioned whether mainstreaming has gone too far. “Some parent organizations, they’re so grateful to the schools that their kids have been mainstreamed that they don’t want to risk really pushing for change,” said Dee Alpert, an advocate in New York who reports on the issue in the online journal specialeducationmuckraker.com.

For teachers, who have many other responsibilities — not least, to teach — managing even one child with a disability can add a wild card to the day. “In a class of 30 to 35 children, there’s a huge question of how much safety or teaching a teacher can provide if he or she is being called on to calm or contain a student on a regular basis,” said Patti Ralabate, a special education expert at the National Education Association. “The teacher is responsible for the safety of all the children in the classroom.”

In my son’s case, restraints were used because he had become a danger to himself, due to frequent self-injurious behavior in the form of head-banging (this was when Charlie was 7-9 years old). I believe the use of these restraints was a serious mistake and did not only physical, but psychological harm, to my son, whose limited language means that he could not, like Tim Miller, tell us that he “thought the school was trying to kill him” (and I am suspecting that the thought may very well have occurred to Charlie). Jim and I, a private ABA consultant and a team of private therapists, and the teachers and aides in Charlie’s current school district, have spent the past two years trying to undo the effects of those restraints. I think we have been largely successful—Charlie would not be calling for school with a laugh on the weekend if he did not like it—-but the vestiges of the behavior, and the fight or flight response, remain in Charlie, and making sure that he feels safe, secure, and appreciated are the sine qua non around here.

The NYT article suggests that the use of restraints is increasing in public schools because there are more students with behavioral, psychiatric, and autism spectrum disorders in mainstream settings. This point strikes me as open for debate. Teachers need the right training about how to set up calming strategies in advance—before a crisis moment—-and they need ongoing support to help address behavioral issues in classrooms as soon as they arise, and not when the out of district consultant makes a weekly visit. But another reason that people have not heard about the use of restraints until now may be because it’s only recently that a child like my son would be able to be in a public school; in another generation, he would already have been shipped out of the district, and to something more like an institution than the school the little yellow school bus drives him too.

I never hesitate to bring up the subject of restraints and how they are not to be used on Charlie in IEP and other school meetings. He has a detailed Behavior Intervention Plan that articulates carefully thought out strategies to calm him, often by teaching him to better communicate his needs and by considering what sensory issues he might be having. Even if you think “they’ll never do that,” you never know, and hindsight teaches me, better to keep our children safe than feel painfully sorry later.

It’s always struck me as a sad irony that, when it comes to parents trying to make sure that an autistic child succeeds at school, communication can pose some of the greatest obstacles. It’s not only that autistic students often struggle themselves to say what’s on their mind and (if they are not verbal) just to communicate. Too often I’ve found it just very hard to let teachers, therapists, and staff know what is going on with Charlie and what our goals are, and I know the reverse has occurred. Charlie’s teachers and I have worked hard this year at letting each other know what is happening; email and regular visits by Jim and me to the classroom, and of Charlie’s teacher to our home, have made it much easier to keep each other informed about what is going on with Charlie.

An article in today’s Wilton Villager (Connecticut) describes a hearing in which parents found fault with the district’s current autism program. At the hearing, more than a few parents noted that aides—paraprofessionals—are not allowed to speak with them. MaryAnn Lombardi, a parent advocate and the mother of an autistic child, visited an autism program in another district, Half Hollows, and said:

“I was very impressed by what I saw…….Paraprofessionals are included in team meetings, which is something we don’t have. Our paraprofessionals are not allowed to speak to us.”

Many other parents complained about the disconnect between paraprofessionals —who spend the most time with a child during the school day — and families.

“It is highly counterproductive,” said Kathy Weber, whose son has autism. “How would we know his day to day experience?”

When I visit Charlie in his room, I talk not only to his teacher but also to the aides (paraprofessionals) and whatever therapists stop by. Only the teachers is authorized to email us, so we don’t usually get a report of his day when Charlie’s teacher is absent. I hope this might be remedied: As Charlie has minimal language, we rely on the teacher’s emails and at Charlie’s IEP meeting I requested that some form of communication about Charlie’s day be provided every day.
But (in our current district) there’s never been a question about talking to the aides—-if we adults can’t communicate, how can we help our kids and students to do so?

Put in a timeout room more than 90 times?

Coming home from school with cuts, bumps, and bruises?

Being held on the floor on his stomach by two adults?

All of these happened to 9-year-old Matthew Montgomery in Oldham County, Kentucky, WAVE 3 news reports. Some of them have happened to my son Charlie and maybe not everyone realizes this, but these kinds of physical restraints can have a long-lasting effect on an autistic child; on any child.

Matthew’s mother, Jeanie, took him out of school in March of 2008. She and her husband are now being charged with truancy by the school district “because missing that many classes violates the district’s policy.”

Linda Powell, a primary school teacher at St John’s CE in Kearsley (UK), has been suspended amid claims that she allegedly struck a 7-year-old girl. As reported in the Bolton News, the school has faced controversy before about its treatment of special needs students: In 2006, parents claimed that boys with special needs were being dressed up as girls, and that children were being physically abused and, as punishment for misbheaving, were “forced to suck a dummy.” Mel Livesay, who belongs to a parents’ action group, says that her 10-year-old autistic son was dressed up as a girl:

“He has autism and it really affected him. It still does now. For a long time I did not know why he did not want to go to school and why he would cling to the railing not wanting to go in.”

There’s education and then there’s punishment, and those are two completely separate things when it comes to my son’s—to any child’s—learning.

The April 14th St. Louis Post-Dispatch makes a case for the need for insurance coverage for autism treatment. SB 1122 would allow for insurance coverage “for the treatment of autism under certain conditions”: Autistic children who are “less than 16 years of age” would qualify for up to $50,000 per year of behavior therapy. St. Louis Post-Dispatch notes that one family, Molly and Steve Schad whose 7-year-old son Harry is autistic, have spent about $60,000 in treatments over the past 5 years. They have refinanced their home “several times,” borrowed from Molly Schad’s parents, and may have to sell her engagement ring.

Dr. Wayne Meyer, medical director of Anthem Blue Cross Blue Shield of Missouri, is interviewed:

…….Studies that show benefit from these therapies have flaws, Meyer said. He doesn’t see enough research that show more intensive therapies working better than less intensive ones.

Still he understands parents’ frustration. “If I had a child with this, I might feel the same way,” Meyer said.

“If we could, we’d pay for everything,” he said. “We’re paying for what we can.”

I can’t of course speak for Meyer, but I kind of suspect that most parents of autistic children do feel they have to do everything they can to help their child do the best she or he can, whatever it costs and the general effect on one’s finances and income.

Here’s a Missouri Autism Legislation Overview by G. K. Luetkemeyer, who includes a list of all the Missouri bills concerning autism. And here’s more about autism legislation in some other states:

• Florida
• Arizona
• California
• Wisconsin
• New Jersey
• Oklahoma
• Colorado 9and Gov. Bill Ritter signed SB 163 into law on April 14, to establish a 24-member Colorado Autism Commission)

Last Friday, Arizona Governor Janet Napolitano signed House Bill 2847 into law, requiring private health- and disability-insurance plans to cover the diagnosis and treatment of autism. As the March 22nd Arizona Republic notes, the legislation specifically provides families with “better access to behavioral therapy.” Children up to the age of 8 can receive up to $50,000 in coverage per year, while children aged 9-16 would benefits capped at $25,000 (and go here for some earlier discussion of the legislation and the different amounts to be allotted to children based on their ages). ABC News has a March 24th report about the legislation entitled Insurance vs. Autism: For Parents, Insurance is a Personal Fight (but for a parent, is advocating for the best education and services and funding for these ever not a “personal fight”?) (and what’s with ABC’s use of a photo of a child with his face in his hands, as if suffering from some terrible despair—-this is my personal experience, but I actually don’t think Charlie has ever struck such a pose when deeply saddened…..but getting back to insurance coverage).

The ABC News story specifically notes that the Arizona legislation is to cover behavioral therapy, that is, Applied Behavior Analysis therapy or ABA. It is noted that a year of ABA can cost “up to $100,000″; this is how ABA is described in the beginning of the ABC News story:

Looking someone in the eye, waving goodbye, or speaking a single word may seem simple to the average person. But an autistic child may have to sit in a chair for eight hours a day, learning these tasks through painstaking repetition called Applied Behavioral Analysis therapy.

$100,000 is at the high end of costs for a year of ABA and ABC News’s description of ABA makes it seem rather a draconian teaching method to have a young child—-a young child with developmental delays—do for eight hours a day.

I say these things out of eight-plus years of experience with ABA: My son Charlie was just over 2 years old when he began an intensive in-home ABA program using the Lovaas agency. He did one year of intensive home ABA, then part-time preschool and ABA at home following the principles of a variant of ABA, Verbal Behavior (VB). Then he went to a series of special ed classrooms that said they were “based on ABA”; we pulled him out of one of these classrooms when Charlie had so many self-injurious and aggressive behaviors that his learning had come to a complete halt. The “ABA” used in those classrooms was what I would call “bad ABA” (to oversimply things grossly)—-what was called “ABA” was essentially behavior modification, in which Charlie sat at a table, did ten “trials,” made all kinds of errors and was sort of prompted, and given a primary reinforcer (i.e., food). (And banged his head on the table, more and more as time passed.) The programs were overseen by an out-of-district consultant who we rarely saw and who took at least a week to return the frantic requests of Charlie’s teacher.

We were fortunate to find a place at a private school that used ABA and Charlie went there until it closed; the teachers called him “lovely boy,” threw him a birthday party when he turned nine, and were in tears on Charlie’s last day. We had also started a home program (again using the Lovaas agency) for a few hours a week; we also moved (into my in-laws’ house) so that Charlie could attend the autism/ABA program in the school district. He has been in this program ever since June of 2006. His self-injurious and aggressive behaviors are minimal; he’s learning things no one thought he could and talking more and better (”I did yoga,” he told me with careful articulation when I asked him what he’d done at school this evening). We recently discontinued his home Lovaas program and have been looking for more sports and music activities, those being the two things that Charlie especially enjoys.

I’ve read a number of Stanley Greenspan’s books about Floortime and also considered Steven Gutstein’s RDI. ABA has a messy history (as Autism Diva has written about); it has been used by Lovaas to cure homosexuality. I think that some ABA professionals have done ABA (and themselves and, most of all, autistic children and their families), a disservice by suggesting that ABA can “recover” or “cure” a child of autism and that ABA is the only option.

For more son, the emphasis on structure and repetition and the use of discrete trial teaching have wokred well (keeping in mind that my son has a lot of challenges on numerous fronts—cognitive, communicative, sensory, behavioral). Charlie frankly seems more relaxed and “peaceful easy-feeling” when he has a lot of structure; it was in the period when Charlie was not in such a carefully organized educational setting that he floundered and became aggressive and a danger to himself and others. ABA can be readily transferred to a school setting, though Charlie’s ABA classroom involves everything but him sitting in a chair and staring into the eyes of a teacher saying “look at me.” (He really does do yoga at school, for Adapted Physical Ed, APE.)

But the main reason that I think ABA has helped Charlie is because of the therapists, the people, who teach Charlie, and because of the relationships he developed with them—-with so many therapists, some of whom rolled their eyes when the ABA consultant told them “you have to do it this way or he’ll never get it,” but stuck with it because they were having too much getting Charlie to laugh and learn. ABA has also been particularly effective for Charlie when combined with other things: One of his first ABA therapists was studying for her Masters in Speech Pathology and got him started communicating by teaching him sign language. Jim used modified ABA to teach Charlie to ride his bike and Charlie learned to read music and play the piano using ABA.

We’ve gone out of our way to find these good teachers, who tend to combine ABA with sensory integration; techniques drawn from Verbal Behavior, Floortime, and RDI; and a flexible attitude. Ultimately, we look to Charlie to see if the therapy is right and if that “peaceful easy feeling-ness” reigns. Though groggy from having to get up early after a week off for Spring Break, Charlie got right out of bed, pulled on his vest, coat, and gloves somehow and pulled the hood far over his head, and stomped out with Jim gently coaxing to wait for the bus (which was late)

Would I have appreciated insurance coverage for ABA when Charlie was younger? Yes, it would have helped (although, when Charlie was younger, there were times when we were just scrambling to get health insurance period, as we were both working a number of part-time and temporary jobs). Do I think that insurance companies should cover ABA because autism is (in the words of National Autism Association President Wendy Fournier, as quoted in the Yuma Sun) “‘treatable. Kids can get better and even recover with the right treatment’”? I can see the uses of this argument to get insurance coverage for autistic children, and I know that many families are on the edge financially to provide for their children in the ways they feel they need to. Still I prefer to say that my son is teachable, and highly so—provided that his teachers start not with a fixed methodology, but start with Charlie, with where he is, with who he is.

That is allegedly what elementary school teacher Diana Z. O’Neill said to a student who has autism, seizure disorder and developmental delay and the abilities of a 15- to 24-month-old child, as reported by MSNBC. My own son has had a history of head-banging that is now under control and it’s all the more painful to hear about stories like this.

Two aides in O’Neill’s Venice (FL) classroom came forward with the allegations of abuse against four of the five students in the classroom. Regarding the autistic student:

Aides told police that O’Neill would wheel his chair into a corner when the boy acted up at lunch, leaving him there. The boy would respond by hitting his head on the wall and O’Neill would say, sarcastically, “Don’t hit your head,” but then allow him to continue.

Once in the corner of the cafeteria, out of sight of most people, O’Neill would twist the boy’s arm behind him or twist fingers until he cried out in pain, the aides said.

There is a chair the boy can be restrained in as an alternative way to control him, the aides said.

The boy has his own nurse with him at all times because of a seizure disorder, but O’Neill would not allow the nurse in the classroom because she said he is a distraction to learning, the aides said.

O’Neill turned herself into the Venice Police Department on Thursday and is charged with four counts of aggravated child abuse.