When the economy got flushed last fall, I wanted them to make some sort of exception and keep Alex in his elementary school for one more year. I figured better you’re with the people who’ve known and loved you for years when the money and resources run short.

Things have changed. “Rebound” is a word you actually spot now sometimes in business news; the Stimulus Plan, educators tell me, will provide a little transfusion relatively soon to schools and special-ed; and I’ve had a chance to think about how Alex maybe needs to move on.

Image: KPBS, flickr.com

I got that last idea when I stopped to think how long I spent in my elementary school — which, I’m informed, since became Bangor, Maine’s first elementary school to house classrooms for students with autism. I was there from K to 6: seven years, longer than I spent in any one school to the end of my formal education at about age 21. After Vine Street Elementary, it was a year or three here, a year or three there, until I was shanghaied by the work world.

Perhaps, Alex is entering a new phase. And it was arresting to see the classrooms of a middle school, where similar behavior to that I’ve seen from Alex and his elementary-school classmates took place somewhere that just seemed more studious. The tone was quieter, the books thicker, and it seemed to me the students were expected to keep their noses closer to the grindstone. This, I believe, will move Alex on, at least for a few years.

Not that there’s anywhere for him to go. We were first recommended to two schools, and neither seems to have a spot. Jill’s fixed on another middle school she likes the sound and tone of, but again, no empty seats. “He’ll go to school somewhere,” Jill says, exhausting her certainty for September.

A Rochester, N.Y. sped teacher I met a few weeks ago emphasizes that Jill and I face a similar challenge to the one we beat in early 1999, when the then-infant Alex needed another hospital to help him climb to the next stage. It was a matter of bed and not desks, but our hospital of choice then also didn’t have many openings. Jill and I went anyway, we noticed, we noted, and we decided and then we fought. Same deal, I think, same deal. Least we’ve been there.

***

The Southern Poverty Law Center has released the booklet Speak Up: Responding to Everyday Bigotry. Strategies and tips for dealing with untoward comments from family, friends, schoolmates, strangers, and others.

Alex is entering 6th grade in the fall, and he will go to a new school.

It’s been six years since we toured special-needs schools. Back then, as Jill points out, we were looking for a kindergarten, and kindergarten classrooms for the autistic don’t differ much from kindergarten classrooms for the typically developing.

So this will be new. First stop was the school of Ron’s, Alex’s old terrific EI special-educator who’s now unit teacher of a special-needs site in a New York City public school.

I got to the meeting before Jill this morning; I rounded a corner and there Ron was. “There he is!” Ron said. A friend. He’s greyer (”More dignified,” I told him) but otherwise the same spark and firm handshake.

I did know  what to expect six years ago but now, I’m unsure what to look for in a school tours.  Here are the same tiled walls, same small bathrooms, same construction paper and marker artwork festooning the corridors.

Jill’s biggest jump start on this next-level search for Alex was a phrase she heard at another special-needs middle school. “We have,” the unit teacher of that school told her, “an expectation of college for our students.” We had never heard any educator say anything like that about Alex before, and it was like a strong new scent.

Still, with the budget crunch I foresaw late last year, I was hoping Alex’s current school could make an exception and perhaps keep him another year. Better to be with the people who’ve taken you from stop-and-stares to reciting “The Pledge of Allegiance” when the money dries up.

“Then Obama came through the funding,” Ron notes.

So it’s up we look. Suddenly I have to start from square one with people who’ve sometimes seen but not really met Alex, telling them all the clever cute stuff he does. How he tricked me out of the boys’ bedroom last night so he could get the cat off Ned’s bed. How he tricked Jill into taking her hand off a doorknob once, because he wanted to make a break for it. How he says clearly, “I want cookies!”

Ron’s school was similar to the one Alex is in now — some rocking, some stimming, wheelchairs parked in the halls. Classrooms had the velcro schedules (”sweeping”; “work time”; “clean up”), the looseleaf binders of simple sentences in big print. “Who wants to read me the recipe?” one teacher asked.

The classrooms were smaller. In one, colored cloth shaded the fluorescent overheads to cut down on distraction. In another, students used a computer to read and relate the life cycle of the butterfly. Science class. “That right, a chrysalis,” the teacher said. Ron shows us yet another loose leaf with a checklist of jobs the older students here perform at a local golf course: pick up trash, clean tables, stock storerooms.

We’re looking forward to Alex’s future. He could have one here.

“If there’s an opening,” Ron said.

(Great NY Times piece on the effect of swine flu-related school closings on special-needs parents.)

[Image: Credit: Valeriana Solaris (flickr.com)]

As I note regularly here, finding the right school and teachers for Charlie, and making sure the education he’s receiving is appropriate, challenging, tailored to his needs, are our constant concern. ABC News visits the Community School in Decatur, Georgia; the school was the subject of a recent article in the New York Times magazine. The school doesn’t seem quite suited to what Charlie might need, but the focus on educating older—adolescent, teenaged—autistic students really interests me. Sometimes it seems the last time that most of us felt sort of confident that we had an idea about the right sort of educational setting and programming for Charlie was when he was preschool age—–elementary and now middle school remain territory for which there’s only a very rough map.

Learning about a career event in New Jersey that was attended by autistic students and other disabled students turns my mind to even more concerns. The event was held at Novartis Pharmaceuticals Corp. in East Hanover in honor of national Disability Mentoring Day. There were 17 other national sponsors present and 50 New Jersey companies at the event, which was overseen by the American Association of People with Disabilities (AAPD) and, within New Jersey, by Allies, Inc., which advocates for people with disabilities and their families.

Yeah, more to think about—-more new terrain to step into, after I take a really deep breath.

Parents in Norwalk (CT) have raised concerns that an autism consultant hired by the school district was not certified as a behavior analyst as she claimed, the November 4th Stamford Advocate reports. Stacy Lore, owner of Carmel, N.Y.-based Spectrum Kids, also allegedly “charged the district for several therapy sessions with their children that never took place.” The Norwalk Board of Education is meeting today in a closed session to discuss these allegations:

Parents filed Freedom of Information requests with the district to get billing information tied to their children’s therapy sessions, which they received, along with evidence the district checked Lore’s credentials and documentation of those credentials.

Special Education Director Janie Friedlander said Lore has not yet provided the district with proof of her certification or degrees. She said a “group decision” would take place as to when the district abandons its pursuit of the information from Lore.

“We are trying to get her cooperation,” Friedlander said. “When we said we would do a thorough investigation, we did mean it.”

Christine Ratcliff, chief operating officer of the Florida-based Behavior Analyst Certification Board, confirmed last month that Lore does not hold a certification from the organization, which is the only group that issues credentials to behavior analysts.

And perhaps—unfortunately—-this kind of misrepresentation of a therapist’s credentials occurs more often than is known?

Brooke Dickerson’s 19-year-old so, Quinn Carey, has attended 10 different schools, yesterday’s Santa Cruz Sentinel reports. Diagnosed with autism as a young child, Quinn has not been able “to receive the consistent care that is needed to develop the skills he is lacking.” His mother notes that his physical size has been a factor:

Now fully grown at 6 feet tall and about 300 pounds, Quinn is more than a handful. The family has taken him to schools in Morgan Hill, San Jose and Palo Alto, but the schools shut down or turned Quinn away because of his size.

“It’s nuts because he’s entitled to appropriate education,” Dickerson said. “He is denied treatment here because of his size and then he is denied over the hill because he is from Santa Cruz. We grew up in Santa Cruz, Quinn loves the ocean and there is nothing here for us.

My son’s grown tall—taller than me, and he’s 11 1/2 years old—and this fact has (not always for the better) changed how people respond to him. So far there’s been a place for Charlie in a public school autism classroom; reading about Quinn Carey’s experience, makes me pause.

Some years ago, when we were trying to find a new school placement for Charlie,I visited a large “center” for children with many disabilities, autism included. I was shown a room that would be for children Charlie’s age: Most of the children were working at their desks one-on-one with instructors. And in one corner was a child—he must have been as old as Charlie is now—he wore a helmet and a loose t-shirt and baggy sweats and he was standing on a gym mat. His arms were out and tension and fight were in his body; at least two instructors were standing, arms out and ready to grab or whatever, him, and to block him from running away from the little padded area he was being fenced in. As we left the room, the woman who was showing me the school wiped tears from her eyes.

(No, Charlie did not attend that school.)

Charlie was really struggling—really—in those days. He’d been restrained too too many times and the result was that his “behavior problems” multiplied. Since then, slowly, with lots of back-stepping and revising of plans and gritting of teeth, we’ve tried to figure out how to help him calm down from really anxious moments while staying safe. There are ways to help a very upset child that are not overly physical; there is a need to better educate about such methods.

And certainly there’s an unspoken need to teach every autistic individual—every one; to really teach them.

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.

Back in the summer, I noted that Charlie had discovered the wonders of YouTube, when he and I found that a number of the Barney videos he used to watch, ask to see a thousand times over, and get so upset and over-stimulated over that he’d knock his head on the floor when we turned one on—-that many of these could be found posted on YouTube. For the past two months, he’s been typing in “Barney” and “school” or “good day good night” and sitting on his knees to watch the old familiar scenes. It was in mid-September that he discovered “Let’s Play School” and that’s been the main one he watched, as I realized just how deeply I have indeed memorized many a Barney song (”butterfly, butterfly, fly fly away”…..).

There seemed to be an endless pick of Barney videos and especially of older ones that featured simple sets and—in one video—–parents, besides the purple dinosaur. Charlie typed and watched; Jim proclaimed that he was on a nostalgia kick. Unlike when he was younger, Charlie understood about turning off the videos. He wanted to see them, but he could let go when he had to. Sometimes he asked a lot to see the videos, and other times, not so much, if at all. And then, this past week, when he asked to see a particular song, type in whatever combination of “Barney” and other words, nothing came up, aside from endless clips of the “I Love You” song.

I found the URL—saved in Firefox—of one video and got to a page informing me that a video’d been removed from YouTube for copyright reasons. And that’s what I told Charlie whe he asked to see a video.

He was wistful, asked to see the videos again, heard the “I Love You” clips a couple of times. He shut the lid of the computer, got up, and moved on.

I’d been—-the panic of mothers—-worried that we’d be stuck in eternal Barney-mode once again. I suspect Charlie would like to see those certain videos if he could; I see that he had walk away when what he wants is not available, and there’s no especial big fuss.

Friday night Charlie and I took the train into lower Manhattan to meet Jim for dinner. Charlie likes to walk in front of us, and he stops when we call out “stop” and “wait for us” and “red light.” He peered into every storefront, pausing sometimes in front of the ones with cases of sodas. He sometimes looked hopefully at the door and then quickened his step when we told him to keep going.

Always so much to see and do out in the big wide world, and it’s always best when it’s the three of us, especially when Charlie leads the way.

After her 3-year-old son, Alec, was diagnosed with autism in April of this year, he and his mother, Andrea Nicholson, moved from their home in Bracebridge to another place where the waiting list for services (specifically Intensive Behavior Intervention or IBI, or ABA in the US) was not dauntingly long. Today’s Gravenhurst Banner notes that Alec’s father and 5-year-old brother, Ayden, have remained in Bracebridge. We’ve moved so many times for the sake of Charlie’s education that I’ve just left some thing in suitcases—no wonder I think so often of life raising Charlie as a journey.

Frankly, I wouldn’t have it any other way. So many great adventures and it’s good to be ever ready to get back on the road.

On October 1st, special education teacher Lalla Schmidt called police after a 14-year-old student hit her lightly on the arm. Police wrote the child a “ticket for assault by contact.” Shane Gregory is autistic and admitted to doing so according to his mother, Holli Gregory:

The teacher’s refusal to follow a plan for Shane Gregory’s education caused his outburst, and her reaction was unwarranted, his mother said. The ticket was merely a play to remove Shane from the classroom, she said.

“He’s not violent,” the boy’s mother, Holli Gregory, said. “He’s not a real big kid.”

The October 14th Victoria Advocate reports that Schmidt has taught in the school district since 1993 and taken “several classes to train her for working with special education students.” It’s also noted that “the school resource officer can write students tickets if it seems appropriate”; it’s more usual for administrators to tell parents about a child’s behavior problems.

Shane has now been placed in an “ABLE”—”Adaptive Behavioral Learning Environment”—classroom.

Says Janice Nodvin, program director of the adult Down syndrome program at the Institute for the Study of Disadvantage and Disability, a nonprofit advocacy organization based in Atlanta, about her now 29-year-old son Evan in today’s Atlanta Journal-Constitution:

“Evan is a man, and he should always be treated as a man, even though we sometimes have to help him out.”

While doctors predicted that Evan would not live until adulthood, he now works at a senior adult day care center, lives on his own, takes public transportation, votes. The Atlanta Journal-Constitution article is about the issues facing the aging parents of developmentally disabled adults and also notes that

….Nodvin said, transitioning her son into the community has been a tricky dance. Without a personal consultant who helps him cook his meals and gets him to the places he needs to be, they’d be standing still.

…….

Nodvin said that many families work so hard to get their children into schools and become self-reliant that they neglect to look at the big picture.

She said her institute encourages parents to put a plan in place while they are young enough and strong enough to have a say because, “We’re still our child’s best advocate.”

“I’ve worked with families where parents are really aging and the adult with the disability has never been outside the home,” Nodvin said. “When is that going to happen? When the person gets sick?”

Today, the expected life span of people with Down syndrome is close to 55 years —- up from a median of about 35 years a few decades ago. The same is true for others with developmental disabilities, including cerebral palsy, autism and fetal alcohol syndrome.

I guess you could say, I feel that every day with Charlie involves looking ahead to that big, unknown tomorrow. There’s so many uncertainties and so much to think about in advance to provide for him. Yet I always take heart knowing that we’ve done all right thus far growing up together and just hope we can keep walking together on the long road.