After I picked up Charlie at the middle school and stopped at the post office to send our school district's Superintendent of Schools my letter via certified mail, I read this response from her in my email:
I am in receipt of your letter dated September 30, 2009. Please understand that superintendents and boards of education are not involved in the IEP process. I encourage you to continue to work with your case manager on your concerns.
[Superintendent of Schools of our New Jersey township]
I also received a number of emails from Charlie's case manager and wrote back (I am working on a response to the Superintendent).
Neither the Superintendent nor Charlie's case manager responded specifically to some of our main concerns outlined in my letter, namely: (1) the two-week-plus delay in informing us that "four person floor control" had been used on Charlie during the first week of school; (2) my noting that Charlie may have underlying, and yet unknown medical and neurological issues that might have something to do with the "behaviors" noted in the incident reports.
And those two concerns are part of and also go far beyond "the IEP process." These two concerns are all about the rights of students and of parents as specified under the Individuals with Disabilities Education Act. They get to the heart of what makes a parent wonder "am I doing the right thing?" when they see the doors of a public school shut behind their child or wave to her as the yellow school bus drives off. Day in and day out, we parents entrust our children to the public schools. We expect that our children will not only be educated, but that they will be treated with respect and compassion, and all the more so when they are children (like Charlie) with disabilities. Further, we charge the school district to attend to the health and safety of our children and to keep us parents informed about any measures the school district takes.
Given the fact that Charlie's speech is very limited, there is very little that he can tell us as to what goes on at school. In a previous school district, Charlie was restrained using a basket hold; as is the case with our current school district, we were not adequately informed about what had gone on and in a timely fashion. (Nor did either school district try to address the problems in a speedy manner to best help Charlie, but that's a whole other story.) As a result of all those basket holds in the previous school district, Charlie used to "pretend" to restrain himself: He'd wrap his arms over his middle, lean over, and make grunting and other noises. Sometimes he'd say "no, no, no" and "no more head bangs" and "no, Charlie, no" and "what's the matter Charlie?"----all phrases that, we had to presume, were said to him while he was being restrained.
And of course we didn't want the same thing ever to happen again to Charlie, to see him traumatized like that. That was why, over three years ago, we moved in with Jim's parents and then into an apartment in this town, so Charlie could attend a program that knew how to address his needs without methods like restraints.
But apparently, that's not the case about this program.
The issues I raised in my letter to the Superintendent were not only about "the IEP process," but about the use of restraints on students, and especially students with disabilities, in the US's public schools. The New York Times has addressed this issue and, in May of this year, hearings about restraints and seclusion was held by the Education and Labor Committee in the House of Representatives. Also on May 5th of this year, the Council of Parent Attorneys and Advocates (COPAA) released a report of 180 incidents of aversive interventions in school programs.
The use of restraints in public schools, and especially the use of restraints on students with disabilities, is a national problem and one that our school district's Superintendent and Board of Education needs to educate itself about quickly and fully. School districts cannot simply bask in the honor of winning awards like a Blue Ribbon Award when some of their students are being restrained using a "four person floor control" in that district's public middle school. We are not the only family in our school district whose child with disabilities has been restrained and who has not been notified in a timely fashion.
Restraints are short-term, stop-gap measures. When they are used, parents need to be immediately notified in writing and teachers, therapists, and others involved in a child's education need to start figuring out other ways to help a child to communicate and to deal with anxiety and stress, so that restraints don't become something that is "just done"; that is "business as usual."
Charlie himself continues to hold up well in a very stressful situation (who wants to be in a place where the general consensus is "we want you o-u-t""?). Wednesday he waited at Walgreen's for a half-hour as a pharmacist, two pharm techs, and I wrangled with our insurance company to get Charlie one of his medications. Thursday, after a mongo afterschool snack, he could hardly wait for Jim to come home for a bike ride and got out the two black bikes on his own; he even assented to taking a different route for the ride. He has been talking a fair amount about "dog, Barney, buh-tah, book"---"buh-tah" being how Charlie used to pronounce "computer" in the days before he could say most vowel and consonant sounds; talking a lot about his memories, and about things that meant a lot to him that he does not have anymore.
An intake has been scheduled for Charlie at an out-of-district center. There's another huge transition ahead and, while I have a great deal more to say to many in our school district from the Superintendent to every member of Charlie's Child Study Team to many, many more individuals, Jim and I have (however much it may not look like it) been moving on.
Our job, after all, is to keep up with Charlie and it means everything to us to be very involved in every part of the process.