A couple of years ago I began thinking about “The Miracle Worker.” Specifically that moment when Annie Sullivan realizes she’s never going to get through to Helen Keller while she’s at home and her parents indulge her and give her candy whenever she starts to have a tantrum.

If only we had a teacher who could take Alex away for two weeks — reach him and teach him, put him in TV detox.

Little House by the Apple Tree (photo by Uncle Phooey, flickr.com)

I’m ashamed to say Alex does not eat with us at the table. He has some other behaviors we don’t like (constant TV-watching, for one) that we’ve allowed to become entrenched. I guess we might just as well have allowed him to wander from plate to plate, grabbing whatever food pleases him.

It began to seem as if Alex does have some things in common with Helen Keller: he’s so hard to reach sometimes. We’ve let certain things slide because it’s just easier. Inside him is an intelligence that’s something to reckon with, and it’s easy to overlook with the rocking and sparse language. If it’s hard for us to get in, I think it’s just as hard for him to get  out.

We watched “The Miracle Worker” the other night because Ned has been reading about Helen Keller in school. This time,  my reaction was mixed. Instead of cheering Annie Sullivan on I thought she was a bit harsh, a bit impatient. I wish she had been more willing to spend a few days just getting to know Helen. Everyone — the mother, the father, Sullivan herself — was a bit wrong and a bit right.

The parents definitely underestimate Helen and indulge her. But they love her. And they want a teacher who’s able to achieve a more affectionate relationship with her. Sullivan definitely wants Helen to communicate and learn. But she’s so rough. It was more painful than I remembered.

Even so I’m left with the sense sometimes that if Alex is going to come out of his shell it won’t happen at home where we indulge him and give in to him because it’s easier and we’re tired. It will happen with some teacher, somewhere, sometime — questions I obviously have no answer to.

One of my students is writing her senior thesis on environmental psychology and classrooms for special needs students. This is the fourth year I’ve known her; she’s an education major and has a special needs sibling, and I’ve long shared stories with her about Charlie and found her a sympathetic and supportive presence. Early yesterday afternoon, she stopped by my office and she asked me a series of questions, as research for her thesis, and I’ve been reflecting on her questions and my answers to them.

What do you worry most about for Charlie?

I’m afraid this one was too easy to answer: A job and a place to live, I said. And paused. I said: What happens to Charlie when we’re gone…….

The other questions evoked less overtly existential sorts of answers from me. We talked about what Charlie’s current classroom looks like; whether I thought that his physical environment had affected him (yes, for sure, I noted); if his teacher and therapists were aware of environmental psychology (of the concepts, yes, but not explicitly, I said); whether I thought that teaching methods or the physical classroom space were more important.

To the last question, I answered emphatically in favor of good teaching methods and good teaching, and good teachers, as being the most important. A classroom can have all the accoutrements, smart boards and computers and the like, but that doesn’t mean the students, all the students, any students will learn. Whether learning at a little blue plastic Little Tykes table in his bedroom in our rented St. Paul duplex or in a public school classroom in New Jersey, it’s the people who’ve made the difference in Charlie’s learning.

And so the interview turned into more of a conversation, with my student and I sharing stories about teaching 7th graders (some of my first, and most formative, teaching experiences were when I was a middle- and high-school Latin teacher in St. Louis). She noted that her students, the boys especially, needed to get up and be in motion, and that sitting at a desk with bells ringing and announcements blaring periodically did not create happy memories in any student. I talked about the effects of no playground and no more recess. Charlie does have gym, and his APE teacher is great at adapting all kinds of sports (basketball now) for his class, but it’s not the same. We talked about proprioceptive input and I mentioned how ever-growing Charlie often doesn’t seem quite sure how to arrange his suddenly longer legs under desks and atop chairs that seem  abruptly smaller.

We could have talked for another hour but, as ever, I had to run out the door to meet Charlie’s schoolbus. As I was packing up my bag, I found myself saying that the topic of adapting and changing the physical environment raised a fundamental question for me: How much to seek to change the environment, the world around Charlie, and how much to seek to teach him to adapt, to change himself?

And, as I opened the door to my car, I noted that I’ve yet no answer.

A long article to appear in the October 19th’s New York Times Magazine describes the D.I.R./Floortime approach for teaching autistic children and, specifically, autistic teenagers. A Decatur, Georigia, school, The Community School is profiled. D.I.R./Floortime is contrasted to Applied Behavior Analysis (ABA), which is based on the principles of behavioral science and is widely used to teach autistic children. The goal of D.I.R./Floortime is said to be a “kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality” and the “essence” said to be that “a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge.”

It’s the case that ABA—which the New York Times Magazine describes, rather succinctly, as using “well-established techniques of reward and punishment to shape a student’s actions” and equates with “rote learning”—-has been a crucial method of teaching my son, and I don’t just meaning for addressing behavior problems.” ABA is how Jim taught Charlie to ride his bike; it’s helped Charlie to learn to play the piano and cello, read music, talk. ABA has a troubled history and I think of it as a most imperfect “science” that can be effective when combined with constant awareness of a child’s sensory needs and communication challenges; recognition of the dignity and competence of a child; the ability to be flexible and keep learning fun. When Charlie struggles to learn or do something new, Jim and I focus on what we can change in our teaching and in our approach, just as we adapt and revise our teaching of students in the college classroom.

That may not sound like what people think of when they hear “ABA,” but that’s what we’ve found to be a good teaching mindset for Charlie. Teaching (at least from what I’ve learned from my own years of teaching involves, again, flexibility and the willingness to combine approaches, to try new things, and to realize when one needs to make changes to best teach one’s students. Charlie’s best teachers have always had teaching him as their most important goal, over and above adhering to any one teaching methodology.

The New York Times Magazine says this about the challenges of teaching autistic teenagers:

With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares.

How best to serve this population remains a subject of debate, because autism is a “final common pathway” diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. “You meet one child with autism and, well, you’ve met one child with autism,” says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. “We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic,” Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. “What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program.”

My son Charlie, as I regularly note, is now an adolescent and well on his way puberty; he’s in the midst of many new changes for him in many ways. He really strugles to talk so communicating strong, complicated and new feelings and sensations is not at all easy. The New York Times Magazine talks about how difficult it can be to console, to teach, to restrain” a 4 or 8 year old and describes the same in older children as “dangerous.” Yes, it’s not easy and every day I wake to a new adventure with Charlie, new challenges, new worries, new hopes. Autistic adolescents and teenagers don’t have to be “dangerous” and difficult behaviors can be addressed in ways that always keep in mind a child’s dignity and presume competence.

I don’t think they’ll be a consensus anytime soon on the best way to teach autistic children and teenagers. And it’s a discussion that needs to happen.

“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.

A judge has upheld the restraining order barring 13-year-old Adam Race from attending church in St. Joseph’s parish in Bertha, Minnesota. From KSAX:

Todd County District Judge Sally Ireland Robertson says 13-year-old Adam Race engaged in “repeated harassment” while attending services at the Church of St. Joseph.

Robertson says Adam’s family has been unable to prevent him from disrupting church services.

The ruling on Monday follows a hearing last week that Adam’s mother had requested to protest the restraining order. Carol Race says many of the claims in the restraining order are not true.

I’m not sure that “repeated harassment” is quite the right phrase: While Adam’s behavior in church may have made (did make) others uncomfortable and then some, “harassment” implies a certain kind of intentionality, and it’s not clear if such was the case.

Yesterday, Carol Race took the stand at a hearing in Long Prairie, Minnesota, over the restraining order filed against her 13-year-old son, Adam Race, by the Church of St. Joseph in Bertha. From WDAY.com:

[Carol Race] represented herself at Tuesday’s hearing, and questioned the Reverend Daniel Walz for about 30 minutes.

Walz acknowledged that he did not witness all of the alleged disruptions, but said he believes they happened.

Judge Sally Ireland Robertson took the matter under advisement and said she would rule later.

Afterward, Race said she was disappointed that she wasn’t allowed to question the priest about his credibility. She said she and her family will return to the church if the restraining order is lifted.

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?

See this comment for news about Nate Tseglin going home.

Autism rights have been much under discussion of late:

A restraining order was filed against the parents of Adam Race by a priest in Bertha, Minnesota, regarding Adam attending church.

The “voting out” of Alex Barton, from his kindergarten class; the teacher, Wendy Portillo, has been removed from the classroom.

An article about the “autism rights movement” and neurodiversity in the latest New York magazine.

And there is also the case of 17-year-old Nate Tseglin, who was removed from his parents’ home and institutionalized; some more details here and at the website, Get Nate Home.

Recently, at the request of the Tseglin Family, the Autistic Self Advocacy Network sent the following letter yesterday for use in a court hearing to determine the future of Nate Tseglin. If you are as of yet unfamiliar with Nate’s case, please visit http://www.getnatehome.com/faq.html for details. Please feel free to distribute the letter, which is below. Read more

Up until last week, posts about “mercury” and “Jenny McCarthy” had the most comments—-after last week, the topic of religion and the restraining order filed against the parents of Adam Race generated a torrent of discussion that’s still going on).

• Priest Files Restraining Order Against Parents of Autistic 13-year-old
  Some 250-plus comments about Adam Race and the parish of St. Joseph’s in Bertha, Minnesota.
• A Mother and a Housewife
  Mothers and housewives can be pretty accomplished—-one whom I know (via the internet) is Kathleen Seidel, who writes the Neurodiversity weblog.
• Read with Care: New Study on Thimerosal and Neurodevelopmental Disorders
  A new study published in the Journal of Neurological Sciences that reports an association between increased mercury (Hg) exposure from thimerosal-containing vaccines and neurodevelopmental disorders; two of the co-authors are Mark and David Geier.
• 5-year-old girl drowns in bathtub
  5-year-old Carlee Bennett of Pleasant Prairie, Wisconsin, apparently drowned in her bathtub on the evening of May 17th.
• So Is It Really Autism?: The search for medical signs
  According to Dr. Fernando Miranda of the Bright Mind Institute, maybe not. A report in the May 19th Good Morning America/ABC News describes some children who were initially diagnosed with autism, and later found to have Landau-Kleffner Syndrome. For some of the children, anti-seizure medication has produced dramatic results.
• Timeout Rooms and Physical Restraints
  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.
• Excluded?: On Keeping the Faith
  Does a fear of rejection, of being excluded, too often lead parents of autistic children and autistic individuals, and individuals who are “different,” not to seek out communities and experiences that they still feel drawn to?
• Insurance Doesn’t Pay For Groceries—What About Autism?
  Two comments by officials in two Utah insurance companies suggest how much is still not known about autism
• It’s Ok to be Disabled Until—-
  Oscar Pistorius, the runner from South Africa who is a double amputee, recently won a decision to be allowed to compete in the Olympic trials.

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.”