A Tale of Two Schools (#169)

As Charlie did his ABA session with a therapist (the latest innovation is a token system–he was requesting “break!” every other trial so the therapist drew 5 circles on a piece of paper and had him cross each out till he could earn the break)–as Charlie asked to work for “Lite Brite” with a perfect curl to that final /t/ instead of primary reinforcers–“geen appo, peesz, care-waht, bwown sipp”–I was editing the PTA newsletter for Charlie’s old school, for the last time.
Charlie attended New Jersey public schools from June 2001 – November 2005. While he has had a great many struggles in the past year, he has also had his full share of positive experiences in various self-contained autism classrooms, and certainly many good memories. Indeed, almost a year ago in January 2005, we had an IEP meeting in which mainstreaming possibilities in addition to the music and library sessions with second graders Charlie was attending were discussed. I had taught Charlie to read a few sight words and our then-case manager cheerily talked about him attending a reading lesson with a first grade class.

Based on the steady progress Charlie made in his ABA program when he was 2-3 years old, we hoped that he might be educated as much as possible with his same-age peers in an inclusive setting. In the spring of 2001 in St. Louis, Charlie (with an aide who was a home therapist) attended a preschool classroom with typical kids and with a few who were classified (none with autism). The results were mixed. We knew that Charlie’s education in the classroom would take a lot of hard and probably slow work, and understood when (after we had moved back to New Jersey), he was moved from a special-ed preschool classroom to a self-contained autism one, where he thrived (he even had a girlfriend).

From the time he was 5 until now, the extent of Charlie’s challenges became clearer and clearer to all: Severe speech delay and disability. SIB. “Behaviors,” period.

In the spring of 2005, Jim and I (how heavy the heart can be) requested that Charlie not attend mainstreaming classes in music and library because of “behaviors.”

“Inclusion” and “mainstreaming” are tricky words, more than capable of evoking messy emotional responses among us autism parents, as the responses to a post on Sometimes Holland Feels Like Hell attest. For sure it is good for Charlie to be with children who have more language than him, whatever their age. It is often the case that, when one child has a “behavior” (screaming, hitting), it not only unsettles the other students but might also be imitated by another student, Charlie included. IDEA‘s very wording–the notion of the “least restricted environment”–implies that certain educational settings can “restrict”–prevent, cut off–a child from the very education they need and deserve.

Charlie is working on preliminary math and reading skills at school and in home therapy. The token system and also activity schedules are teaching him to cope and express his frustration in other ways than hitting his head. All day at home he wore that open, innocent look. He ate his burger and rice and peas and was done. Even though he requested “clear drink,” he made no move to get into the car and we spent a happy evening listening to songs and looking at the Wiggles website. When Dell’amore Non Si Sa came on, an unfathomable look of joy came onto Charlie’s face and he ran, lickety split, out of the room and under the covers of my bed.

Here is part of my last “Letter from the Editor”:
[Charlie] is now a very big boy–8 1/2 years old–and is attending a private autism school where, after not even two weeks, he has quickly settled in.
Charlie and our small family–my husband, Jim Fisher, and I–have been glad that he was a student here … for these past two years. It always brought untold joy to Jim and me to see him marching in and out with his backpack, dancing at the first Trick or Trunk on October of 2004, trying to make his puppet at Art Night and to play the games at the … Olympics (now Field Day). With his fellow classmates, [teacher], and the classroom aides, he visited the pumpkin patch and the Turtleback Zoo, celebrated the holidays, listened to stories….
While Charlie’s new school is not in [our town], you will still see him around town. Whether pushing a cart at Pathmark, or jumping off the diving board at the … pool; whether biking with Jim … : Watch out for Charlie.

When Charlie attended his previous school, I became very involved as a PTA Co-President and Newsletter Editor, volunteered lots, met many non-autism parents, was a public presence for autism and for Charlie. And though Charlie and his new school are not in our town, he and we and every child with autism must be included, more than ever, stims and all. There is the “official” sort of inclusion in the classroom and there is the constant work that is ours to make sure our kids are always included in every aspect of life in our communities, in our society, in our world.

3 Responses to “A Tale of Two Schools (#169)”
  1. Kristin says:

    I really enjoy reading your blog. Gabe is 2 1/2 years old, so there is quite an age difference between Charle and him, but I feel that our life with Autism has just begun. Your stories are very helpful in catching a glimpse of where Gabe could be in 6 years. Thanks-
    Kristin- Autism:Ready-Set-Go!

  2. Eileen says:

    I believe that your story of your life with Charlie is an example of how we must all be flexible and ready to change our children’s current educational placements with their growing needs. With the help that Charlie is getting now in his private ABA school, he may come to a point in which he will once again be ready to be in a mainstream environment. If not, that is fine too. As long as we keep working to provide them with what works best for them in the now, then they will all be fine.

  3. Wade Rankin says:

    School settings are problematic for all of our kids. There are trade-offs either way you go (i.e., “inclusion” or self-contained), and the right choice for one child will not be right for another. But you are absolutely on target when you assign equal importance to “the constant work that is ours to make sure our kids are always included in every aspect of life in our communities, in our society, in our world.” Whether our children are “typical” or on the spectrum, we need to act on the knowledge that teaching and socialization do not end when the child leaves the classroom.

    By the way, why is the grass white in that park where Charlie and Jim are walking?

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