Recent I joined a sped educators’ board over on LinkedIn recently, “Special Education Innovators.” I’m not a special educator but I like to think some of them would like to have a parent’s perspective now and then.

Discussions are half the fun of LinkedIn groups, and when things are slow I like to pose a question. So I posted: “What’s the best and worst thing for educators when it comes to dealing with parents of kids with special needs?”

Image: usgarchives.net

I got two responses, both insightful.

“The Best?” replied one group member, “Concerned parents who are honest with themselves about their child’s needs. They are generally better informed, and maintain a healthy collaboration with educators and related service providers. The Worst: An aggressive, uninformed parent who comes to school once a year to make unreasonable demands for academic results. They rarely even check their child’s bookbag for teacher communication. Parents who work two jobs, group home guardians, and unconcerned parents rarely make any contact with professionals.”

(Two jobs? Will this economy spare no aspect of our lives, not even parent-teacher conferences?)

“The best thing you can do is stay informed and involved in your child’s education and have realistic goals and dreams for him or her,” replied another member. “Also, make sure your expectations for the teacher and school staff are reasonable, as well. Most teachers I know welcome open communication between home and school and an informed, supportive parent is wonderful. The problems come when the parent becomes so focused on his or her child that he or she forgets the teacher has other students for whom she’s responsible, as well as other school-related activities, and begins to put unreasonable demands on the teacher’s time and attention.”

We’ve tried to adhere to these rules with Alex and his teachers. We send at least as many notes back to school as we receive, and have often been the ones initiating exchanges. We slate our parent/teacher conferences outside the set and regimented days and hours, as long as his teacher agrees, because we figure it gives the teacher more time to talk to us and more brain space to think about Alex. Jill also teaches knitting every Friday morning in Alex’s class, so gets a chance to see how he’s doing real and close up.

The Alex we’ve seen in the classroom - velcroing the right date to the wall calendar, leading the “Pledge of Allegiance,” taking classmates by the hand - is often heads above the Alex we see at home, where every afternoon off the bus he just wants to shed his khakis and munch a few pretzels on the way into evening. The Alex we see in the classroom, I like to think, is more like the grown-up Alex we’ll someday launch into the world. Seeing him this way is well worth shuffling the schedules and making time to stay informed. Hope it stays that way after one of us has to get a second job.

The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.

An Arizona man, Raymond G. Parenteau, was arrested on Wednesday on the charges of allegedly defrauding the Prescott Unified School District of almost $20,000, today’s Daily Courier reports. Parenteau had contracted with the school district for $55 an hour to homeschool his 12-year-old autistic son; he is alleged to have hired a certified special education instructor to work with his son for $25 an hour, and to have kept $30 for himself:

During a nine-month period starting in January 2007, Parenteau allegedly charged the school district $36,258. He paid the special education assistant only $16,262 of the money he received from PUSD. Parenteau also allegedly billed the school district for hours not used for teaching his son and created false invoices.

Says Parenteau, who has also advocated on behalf of several parents of autistic children during the past few months:

“The charges are unfounded. I will end up vindicated………This gets PUSD what it wanted. I am not allowed to help other students. As a condition of my release on bail, I have to stay away from PUSD.”

Parenteau was charged with felony fraudulent schemes and forgery, and is currently out on bail.

A St. Paul family is suing after the school district decided to bar Newman, their son’s service dog, from his public school, Como Park Elementary. Newman, a Golden Retriever, is connected to 8-year-old Wally LaBerge throughout the day via a harness, yesterday’s WCCO notes. While service dogs have been more and more widely used to assist autistic children, there’s been more than a little disagreement about their presence in public places, from schools to airplanes to apartments. It’s noted that the dogs are calming and help to allay anxieties: Until it’s widely understood how much a service dog can help an autistic child, they’ll be more of these sorts of disputes, and more anxiety, and antagonism.

And not enough learning on either side.

A review of special needs education in the UK has found that “parents feel the system is not on their side,” today’s BBC reports:

[Inquiry chairman] Brian Lamb wrote: “A major concern for parents is the lack of transparency and lack of information about school and local authority SEN policies”.

And he said no-one discussed with parents what their hopes and aspirations were for their children.

I suspect the situation is not so different for parents in the US……

Life 101: That’s how the University of Arizona’s Chapel Haven West program is referred to in a story on yesterday’s ABC News. The program helps young adults with autism learn “to live independent and productive lives.”

“Just friendships, job interviews, actually filling out resumes and bringing them to a job, having a roommate,” said Betsey Parlato, president of Chapel Haven. “These are all things that you and I take for granted, but for someone with autism it’s a monumental challenge.”

In a social skills class, University of Arizona teaching assistants show the students the “hidden rules” that help them navigate their surroundings and interpret changing social cues.

“Not to stare inappropriately and that kind of stuff,” said Mackenzie [Smith, who's described as obsessed with politics]. “And about teacher-student relationships and that kind of stuff.”

“They have to be taught as if they have never seen before what kind of behavior is, for instance, at a concert,” Parlato said. “Is it all right to talk and laugh loudly at a concert? And then there’s a distinction made — well, what kind of concert? And they actually have to learn it.”

Special education teachers also assist students about skills such as using the bank, cooking, and home repair (changing a light bulb) (sounds like more than a few of us might benefit from a refresher in some of these…..).

Go here to learn more about Chapel Haven West’s residential, education, recreation, supported living, and employment programs.

Washington’s first private school specifically for autistic children, Wintros Academy, closed its doors last Friday, according to yesterday’s Whidbey News Time Reporter:

Founders of the academy say local school districts are partly to blame after months of failed talks with special education departments. It’s a problem a spokesperson with the state Office of the Superintendent of Public Instruction (OSPI) called “common.”

In order for Wintros to receive state funding, it first needed sponsorship by a school district to be certified as a non-public agency, instead of a private school. But no Whidbey school district would sign on.

“A district would need to extend their liability to the school, which is where problems can start,” Doug Gill of OSPI said.

Wintros Academy has only been in operation since September 2nd of this year. A June 18th Whidbey News Time article described how the school was conceived of in 2005 by Brandi Matros and Charity Winkler, both mothers of autistic children.

Yesterday’s article quotes local special education administrators as claiming that there was no need to send autistic children to an out-of-district private school placement like Wintros Academy:

“We’re saying that we can provide an appropriate education, so we don’t need to pay for anyone to do anything differently,” [Gail Cleveland, Special Education director for the Oak Harbor School District] said.

But a number of parents must have felt that the school district was not providing such an “appropriate education.” A number of “children from North and South Whidbey were soon pulled from the school districts and enrolled in the new program.” This led to more instructors having to be hired at Wintros Academy, and to Winkler going to the special education departments. According to Winkler, “she was never given a candid answer as to why Wintros was denied help from the public school districts.”

Certainly if a public school district is able to provide an “appropriate” education, then parents would send their children to the public school’s programs and accept the placements offered. Certainly there’s been more than a few times over the past couple of years when the school district said their placement was “appropriate” for Charlie, and Jim and I preferred to disagree. It’s been precisely because of disputes over what we thought, versus what the school district though, was “appropriate” for Charlie that we at one point (in November of 2005) took Charlie out of his school classroom until a placement that we thought was appropriate was found (it was a private placement), and that, a few months later, we moved so that Charlie could attend the autism program in a different school district.

A recent article on School Matters on KnoxNews illustrates the nature of such disputes which, I think it can fairly be said, are endemic and no doubt will stay that way, or at least until there’s consensus about what’s appropriate, and what’s not.

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?

Back in July, it was reported that the rate of autism in Somali children in Minnapolis was notably high. According to the Minnesota Department of Education:

in the Minneapolis’ early childhood and kindergarten programs, more than 12 percent of the students with autism reported speaking Somali at home. According to Minneapolis school officials, more than 17 percent of the children in the district’s early childhood special education autism program are Somali speaking.

Almost 6 percent of the district’s total enrollment is made up of Somali-speaking students, and about 6 percent of the children in the district’s overall early childhood and kindergarten special education programs are Somali.

Speculation about what could be causing this “cluster” of autism cases in so specific a population immediately started up, especially among proponents of environmental causes of autism such as journalist David Kirby. Mike Stanton at Action for Autism gives an overview of all this, and notes how Kirby and others sought to connect the Somali autism rate—or, more precisely, the rate of autism among children born in the Minneapolis area to immigrant parents from Somalia—to vaccinations, and also to a theory that a Vitamin D deficiency can be linked to autism. Dr. Steve Novella at the Neurologica blog writes specifically about the notion of a “cluster” of autism cases being found:

apparent clusters of diseases are reported all the time. Most of the time the clusters are not real, meaning they are just statistical flukes. So the first question to answer with any apparent cluster is - does this represent a real epidemiological phenomenon.

……….

One problem with the cluster hypothesis is that other immigrant Somali communities have not experienced increased autism rates. If there is an environmental trigger causing the two identified clusters, why are there not clusters in these other communities?

If it turns out to be true that autism rates have significantly increased in some Somali immigrant communities, above what is seen in Somalia or in non-Somali in the same communities, then we can conclude that something is going on and a potential trigger should be sought.

It also has to be noted that autism is really a collection of diseases, not a specific disease. So we may be seeing a new entity that has clinical overlap in features and symptoms with recognized forms of autism.

Dr. Novella writes that more investigation is indeed needed about the Somali “cluster” and if it is real, and what factors might be playing a role, whether genetic or environmental. He references an article from the Simons Foundation Autism Research Initiative that cites Judy Punyko, an epidemiologist at the Minnesota Department of Health. I August, Punyko formed a study group of 12 experts (including epidemiologists, physicians, school administrators and special education teachers) to study the rate of autism in Somali children in Minneapolis with “age-matched controls.”

Even then, she adds, educational data may be incomplete or inaccurate. The 13 special education categories reported to the state and federal government are intended to help provide a child with the best available educational services. If a child has two conditions, such as autism and developmental delay, they can only be assigned to one primary category; Minnesota does not require a medical diagnosis of autism to be included in the category. Finally, some schools, especially those in poorer districts, often overlook mild forms of autism.

Population data used for the analysis also comes from the 2000 census, which may be vastly different than current numbers. “The population of Somalis is a fluid number in Minnesota,” says Punyko.

Mike Stanton also notes that “in Minnesota there is no reliable epidemiological data for autism”—because, as he points out, the “administrative data for children in receipt of autism services” is based on “teacher assessment,” with a diagnosis from a “trained clinician” not required.

I know this from experience: My son was first evaluated for “delays” in Minnesota, by a Child Study Team from the St. Paul Public Schools. That was in the spring of 1999 (he wasn’t 2 years old yet) and he immediately started to receive services (speech, OT, and special ed, only a few hours each week). He wasn’t actually diagnosed with autism until July of 1999 (and the only change in the services was that he qualified for more hours of special education, which we were urged to have him receive in a school setting, rather than at home—that classroom was not appropriate for Charlie—but this is another story, and a whole ‘nother post). Also (and this is completely anecdotal), a number of Somali families lived in a high-rise apartment that was right next to the building where Charlie’s pediatrician had his office, and there were many Somali mothers with strollers and young children waiting beside us among the little tables and fish tanks in the waiting room). (And, also really anecdotally, no Somali children in Charlie’s special ed program in St. Paul, back in the summer of 1999.)

One question that (following on today’s earlier DSM-V post) needs to be addressed is how cultural factors might be at work here. And Dr. Novella writes that

Somali parents certainly believe they are experiencing something new, and some pediatric neurologists in these areas have had their suspicions also. But this is not enough to form a scientific conclusion - only to justify further research.

The true autism rate in Somalia needs to be investigated also. We should not assume that because the culture does not recognize autism it does not exist.

Besides keeping in mind the particular conditions that a child is said to be “autistic” in Minnesota—again, a child can receive autism services through assessment by a teacher (as my son did) and without receiving an official diagnosis from a “trained clinician”—we need to get a better sense of how autism is understood in Somalia, and what the numbers there are, and how these are determined.

Legislation to provide for insurance coverage for autism treatment has been introduced, and even passed, in many states including my own state of New Jersey; here’s a number of previous posts on this topic. An Associated Press article quotes J.P. Wieske, a lobbyist for an insurance coalition, as saying that “‘This is the hottest trend in mandates we’ve seen in a long time…..It’s hard to fight them.’”

Notable in the Associated Press is mention of families with older children—-11, 12 (same age as my son) who are using ABA therapy. It’s noted that, while there are studies arguing for the benefits of ABA therapy in younger children, research supporting its efficacy for older children are “sparse.”

Some states require behavior therapy coverage up to age 18 or 21. But the scientific evidence for ABA is strongest for the youngest, ages 2 to 5. Some researchers have reported on individual children with autism who no longer appeared disabled when they reached school age.

The most rigorous studies, though, show mixed results. A study published in 2000 showed that preschoolers who got intensive behavior therapy had greater gains in IQ than children who didn’t get the therapy. But there was little difference in the two group’s language development or the intensity of behavior problems. And the children most severely affected by autism showed no comparative gain.

Another study in preschoolers, published in 2005, showed little difference between an intensive ABA-based program run by therapists and less-intensive therapy from parents; children in both groups improved.

When it comes to older children, the research is sparse, said Tristram Smith of the University of Rochester Medical Center in New York, who co-authored the 2000 autism study.

“You could make a decent case for the little kids up to 6 or 7 that (insurance mandates) would be appropriate,” Smith said. “I think it would be hard to make that case for older kids.”

Psychology professor Laura Schreibman of the University of California at San Diego also raises the problem of “‘fly-by-night’ behavior therapists could defraud insurers with ineffective therapy.”

The same questions remain: Are educational treatments like ABA better provided by public schools or private insurers, or by a mix of both? And, how to autistic teenagers and, too, adults—my son is always learning, and I know there’s no deadline for when we stop teaching him.