Letter to the Superintendent
What I Should Have Asked HHS Secretary Sebelius

Email from the Superintendent

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:

Dr. Chew:

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.

As you can see from my postings here, our school district hasn't exactly been doing this in Charlie's case.

 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 walking to the car past the middle school

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.



I'd be speechless, but...it's a bureaucrat, right? WTF, all over again. As though this were just some "IEP" situation. What a ****head. Abuse of a child in a classroom, manhandling of a child in a district classroom, *touching* a child in a district classroom...that all falls outside of the circumscribed arena of IEPs. That superintendent better perk up some ears and start paying some damned attention here. Superintendents had better bloody well be involved in malfeasance and violation of federal law going on in their districts, wouldn't you think? Idiot.

Club 166

Delay, Deflect, Deny.

I think they all read from the same playbook.

They will find out that you and Jim will be there for Charlie, meeting after meeting, and that you will not give up.

And eventually, you will start to get somewhere.

Hang in there.


Kristina Chew

I'm writing to the Superintendent right now. (I should really be reading about mud brick construction and the walls of Troy.)


Mama mia! This is so clearly not about the IEP process, it is about school policies. What you are demanding is not a specific accommodation for an individual but rather an across the board policy that is part of an appropriate education in the least restrictive environment, and if the superintendent cannot she that she should not be in this line of work.


And, more to the point, it's not *only* an IEP issue -- it's a legal one. Parents may request meetings at any time (I've never heard of a district saying, in effect, "nah, that's okay"). Not to mention the requirement (though I forget if it's in IDEA or the Hughes Bill) that the use of restraint requires notification immediately and a meeting within 48 hours, to create a positive behavior support plan (if the student doesn't yet have one) or to review it if the student does.

Kristina Chew

NJ really needs something like the Hughes Bill AB 1538


A friend contacted the NJ Dept of Ed today and got nowhere asking about NJ's policies on restraints. I'm having some serious qualms (plus) about this state and what it does and doesn't do for students with disabilities.


Nice to see you back on the Hub...
I think you need a lawyer. Restraining him like that is not acceptable like folks said on the other post.


It seems the Dept of Ed may be relying on parents having too little time and energy (or money for a lawyer for many) to keep pursuing these issues. Is there any help available to you?


Had my eldest been restrained, the meltdown would have been 100% worse, and they were told too. I have never gotten a reply to my question about restraints in the public system - will have to ask elsewhere - I'm not certain it's allowed, and if it's that bad I have seen them call the police (on the news).

He has severe claustrophobia, even the thought of being unable to move causes an anxiety attack.

School has set up his table with room to move, a cushion to move on, the ability to get up and stand if he needs to and 15min every afternoon he can leave with the EA or not... his choice... in exchange... he's quiet and doing well.

It's not difficult to make minor accommodations.

And... it's time for the lawyer to write those letters... unfortunately.


Have your lawyer contact both the School Board and the Superintendent- since they ARE responsible for inappropriate "discipline" policies in their schools.


Our superintendent is the sameway, alloof self-righteous and divorced from the day to day concerns of parents. Unfortunatelyit seems that you have to go through the District Special Ed director. I would also hazard a guess that if there is a law against corporal punishment in NJ it can be ascribed to restraints and holds in special needs cases. I would check with the Office fo Civil Rights from the Dept of Education. They have a NJ office and see what they say. They should have handled cases like Charlie's. I also agree with the other poster who suggested its time for a lawyer.


I'm so sorry kristina. Our district is much the same. Too big for it's britches and passing the buck. Why I went to mo capital and dc, but keep hearing "up to the school" and of course the school says "up to iep" team. How many times do we have to prove that the wolves can't guard the sheep? It is so maddening but even moreso is the general publics opinion (those kids don't belong / derserve to be in school). Sigh...so we keep on fighting to get people to recognize our kids have equal worth and right and protect our kids from mistreatment.


Kristina, I cannot imagine what Charlie did that required restraint. You know what I mean?

Did they want him to do something and he resisted?

Was it really that important that they needed *4* people?


I would guess that the lack of response on the part of the Superintendent was at the advice of his/their attorney(ies), as I can only surmise that they are in some deep legal s*** at this point. How could they not be?

I don't know anything about applicable state laws, but is doesn't NJ ultimately have to answer to the ADA law?

What's sad is that these folks will hide behind any law to cover their actions. If they had only acted as human beings, called you in immediately the minute they felt they had no choice but to use these restraints ... said something like, "This isn't working. We have an uncontrollable situation here. Charlie is not responding to intervention" or something like that, wouldn't you have bent over backwards to make this work? Obviously, they were ashamed of their [illegal] mistreatment, and attempted to cover up.

How 'bout a huge press exposé? I guess you don't want to expose Charlie or yourselves, but some deep investigative reporting must be done, so that others do not suffer the same fate.


I am so sorry Kristina. This is outrageous. Is there anything I can do to help. Do we need to organize the parents in this district to take on the issue of using restraints on our kids. This is beyond unacceptable!! I would be happy to organize a meeting with the parents. They can not ignore ALL of us!!


You know, MA, where I live, does have a law, and it's worth the paper it's printed on. I spent a year in the hearing process to keep them from restraining my AS son, and though a lot of people from state compliance and appeals agencies told me they were so very sorry for what had happened to my son, it took a whole school year, $20,000 in legal fees, and nonstop advocacy to get them to improve things. These laws are important, of course, but ENFORCEMENT is also critical. That is not exactly a strength of this system, at least in my state.

Kristina Chew

The school situation is irredeemable at this point. If they had done an FBA back in February ---or back in October of 2008----things might not have gotten to this point.

On the other hand, I am not very happy with myself for not addressing these things much earlier. We thought we were---thought that the district's consultants were---and last year was one of those years where things would be ok for a period, things would get patched up.

In reality, I realize that we should have taken Charlie out last October when we were first told we should think ahead about Charlie in a "temporary residential placement," namely, Bancroft. http://bit.ly/2lCUdm

Kristina Chew

@Farmwifetwo, yes, I think the letters should be written by someone else, with JD behind their name.....


Make sure you copy the school attorney on the letter. As well as your own.... If you don't have one, make one up. ;)


Thinking again, don't make one up. Get one.

Sending a copy to their lawyer gives the lawyer a reason to call the Super and yell at him for being an as&W*&^).

Kristina Chew

I wanted to cc their lawyer(s) but haven't been able to figure out the name of their lawyer from the website. Working on it......


I'm sorry you and Charlie are having such a rough time. It's frustrating for everyone. I'm sure you don't want your boy to bang his head and restraining him in a basket hold seems preferable to having him injure himself. The phrases he echoes don't seem like the people restraining him were trying to hurt him. "No, Charlie, no" and "No more head bang" sound pretty much like what one would say at a time like that.
What happens when he gets aggressive at home?Do you restrain him? Can you show the teachers how you calm him down? I'm sure they'd welcome all the help you can give them, since Charlie can't tell them what's bothering him.

Kristina Chew

We've offered to show the teachers what we did at home---these offers were met with no response, sadly.

I think those phrases that Charlie says, while well-meant, have become aversive to him, due to him associating him with the restraining. Unfortunately the use of the basket hold to restrain him actually led to more self-injurious behavior, rather than stopping it.

We've helped him minimize his aggression at home by being very attentive to his different ways of communicating. We've learned to sense when his anxiety is just starting up, and to help him calm himself. Since July, things have been quite peaceful around here, due to a lot of efforts on everyone's part!


i am so upset and sad to hear about this, kristina. it's unconscionable for them to employ that hold. and even worse to not come clean about it on the very first day they did it.

Bonnie Sayers (autismfamily)

Well it seems LAUSD Superintendent is more open to the special ed families. The CAC Chair is having issues with her sons high school and been sending emails out and ccing the bd of ed members and CAC officers.

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