Ketchup Action
53. Conflicts of Interest: public school autism programs and "the system"

52. Round and Round We Go (The IDEA/IEP Follies)

Wednesday morning the screen of my laptop flickered gently out. Repeated efforts revealed that I had best contact the Genius Bar. And so this post, and maybe a couple more plus posts depending on what the "Pomae Genii" are able to do for and with my laptop, is brought to you courtesy of the blogging website that used to host Autismland, the blog I called the "autism reality show" and wrote from June 2005 till February 2007 (and first under the name "My Son Has Autism"). (I've occasionally written a few entries here since then.) And, this post is brought to you courtesy of the sometimes balky, partially keyboarded laptop (a couple of years ago there was a phase of pull-out-the-keys-from-laptop-keyboard going on in our household) that I (roll out the violins) started blogging on when Charlie's head didn't reach past my shoulder.  

Old website, old laptop, me wondering how soon it'll be that I just reach Charlie's shoulder, and us in the same dilemma about Charlie's education, and again in the IDEA/IEP Follies.

 Wednesday morning we requested an emergency meeting with the school district. I wrote yesterday about the helmet. It was also communicated to me over the phone on Tuesday by Charlie's teacher that they have been restaining him ("doing takedowns") every day except for Monday since the school year started last week. We have so far received two individual emails about Charlie and two phone calls (one on Saturday morning, the other Tuesday afternoon); the restraints were not specifically noted until Tuesday. We await the incident reports. There have also been some group emails to the parents of all the children in Charlie's class. Last school year, and during this past summer's Extended School Year, Charlie's teacher (the same teacher) emailed us daily about him. 

I mean, c'mon, you don't have to be a Genius (Apple type or Einstein type) to add up the 2 + 2 going on here. (Apologies for being cryptic, and greetings again to any and all adminstrators, etc. from our school district.) 

I didn't hear anything from Charlie's teacher on Wednesday. We also have yet to hear a response from the district regarding our three requests for an emergency meeting. So while the fun continues with these shenanigans (and here I thought we had schools to educate children! aber nein, schade), actual fun does continue in our little corner of suburban Jersey. Charlie has been typing on my laptop to watch YouTube videos, and yesterday he was quietly flummoxed when I said that my computer is "broken" (a word that has been a source of past distress). I tried showing him a video on my phone. He was really puzzled about that and, after sitting looking at his lap for a few minutes, he asked for his socks and shoes, got them, said "helmet on" and got his bike helmet, and got out the bikes. He waited over a half-hour for Jim to get home on the train, and started pedalling down the street almost before Jim got on his bike. 

Welcome back to Autismland.



What the hell? Restraint?

Someone I know wrote about that here:

You're in my thoughts.


NJ is in desperate need of the same rules we have here in PA. I haven't worked in a school for a bit, but I believe you have to notify within 24 or 48 hours, and offer to hold an emergency team meeting within 10 days. There's absolutely no reason you should have just found out.
I won't say it might not be necessary in some cases, but I think that if the effort involved in implementing a restraint were increased, it'd be the last resort it should be. I know where I worked, when the rules changed, our restraints drastically decreased. When it changed from restraint, then fill out the form, to restrain, fill out the form, find a witness for your phone call, call the parent, if you get no answer, fill out a mailing form, possibly have to schedule meeting, which comes with its own set of annoyances, trying everything else first suddenly became much simpler.

Club 166

Thoughts and prayers going your way.


a parent

Now I understand why I couldn't submit this comment last night.

Wrong, wrong, wrong. The more I think about this the more wrong it seems. Behaviors are communication; communication needs to be developed not contained in such a way as to make it ignorable. Behavior improvement plans, goals and timelines, looking for triggers and finding out how to duplicate home success in the school setting... why aren't these things happening? It's criminal in my mind. The only thing I can say is that it was amazing how much things changed when we brought a lawyer to an IEP meeting. I's were dotted and t's were crossed and there was no more stonewalling and generally illegal bs going on. It cost us a good chunk of change, but it was worth it.

I'm rooting for you.


My thoughts are with you. They probably aren't responding to you because they're lining up their legal team. If you don't have a lawyer yet, I recommend getting one. They have theirs.
That helmet is just awful.
Best of luck


I am rooting for you too. xoxoxo


On your side. And Charlie's. There is no excuse for not informing you immediately of this "restraints" stuff. There is a line in here somewhere that divides your duties as a citizen to fight this fight for other citizens who come after or to fight this fight because, dammit, taxes pay for this and it's the right thing...and on the other side, to seek other remedies for the sake of your son, who is obviously very unhappy in school. And I'd again bet the hair on my head that what Beth says is true: The silence means forces are building.

You three remain in my thoughts.

Kristina Chew

Mostly I'm feeling bad that things have gotten to this point. Our district is, as I understand, quite lawyered up itself..... am staying focused on thinking ahead to what is next and best for Charlie.

I did hear back from the district this morning, with the usual mentions of "we are just doing this for Charlie's safety following the BIP that we all agreed upon"---um, yeah, but...........


How upsetting! I know they have a BIP but have they done a true FBA?? What do they feel is motivating these behaviors? Do they even know??


Oh, noes! What Ariane said. This morning at coffee we all admired the BIP for one of the kids -- thoughtfully done.

Kristina Chew

No, they haven't--we asked earlier this year.

Again, this a "highly touted" in-district public school autism program that is recommended to families by advocates and others.


Um, the BIP has failed if he's been restrained once, never mind several times. Which means time for a new FBA/BIP/Whatever.

The helmet thing baffles me- I understand using one as a short term intervention when nothing else works, but since February? And the *only* environment he needs it in is school- which is usually a good suggestion that the school is the problem.


They must be kidding me! How do you put together a behavior intervention plan without conducting a functional behavioral assessment??? They are working blindly!! Don't they realize all behavior has a function...a purpose? Kristina, I would demand a REAL assessment.


My heart breaks for you, and Jim, and especially Charlie. I hope that you are able to work out a favorable resolution with the district, and soon! Keep on fighting the good fight, Kristina!

Kristina Chew

At one meeting, school personnel said "FBAs aren't really objective."

Huh? So much for the behavioral expertise of this program......(I thought at the time). We asked our former Lovaas consultant to observe Charlie (the school "let" her do so in July during ESY; their behavioral consultant was present, of course).

@Nicole, yes, since February......... my own thinking is quite aligned with yours.


You know how I feel about this whole thing...they are out of control. A good program would allow peer review and observation. And not be afraid of any outside opinion.


I feel so sad to read this. :(


Here they simply suspend them for a few days, bring them back and suspend them again. If they are in a regular classroom at that point they move them to a self-contained behaviour and/or PDD one. And the cycle starts again. Personally, I'd rather they do that than use restraints. I've never heard if they do or don't, but I have my doubts b/c the teacher's aren't allowed to touch students at all here. I do know, if necessary they will call in the police to deal with it depending on the severity of damage/injury. After I send this, I'm going to send out an email and ask. They are suppose to deal with it under Ont PPM 140 - ABA in school's - to deal with the behaviours but unless you get after them, they won't. I threatened to call Behaviour Sevices (Steps to Success), the only dept I can get services from without the school sending a referral and they backtracked quickly and set up an appropriate behaviour/social skills program for my eldest. His issues granted are relatively minor compared to others... but still... I shouldn't have had to throw a hiss.

Have you seriously considered that this program is not living up to its hype. That even after a legal battle and even if they did everything they are told to do.... It may still be a poor fit for Charlie.

Whatever you decide... I hope it works out well for all of you.

Mrs. C

OH! Kristina! I'm so sorry that you are going through this with Charlie! I thought things were ever so much better there. Elf is still a bit traumatized by what happened to him three years ago in ps. I would like to have fought them, but in the end it was about the Elf and he wasn't functioning, so now we homeschool.

Kristina, if anyone has a good chance in a fight like this, it would be you. I know you will do whatever is best for Charlie and you have my prayers!!

*So* disappointed in people this morning, reading this. I kinda fooled myself that there was some sort of promised land somewhere autistics were treated with respect. :[


Not sure how I missed this particular post but glad Joe directed me back here...

You know how I feel about behavior being just a different form of communication. I am appalled that the district/school isn't cooperating and suggesting that, at the very least, it may be time to revisit Charlie's BIP and to ascertain what's different at school than ANYWHERE else that causes Charlie to behave/communicate in the manner he does.

Sending hugs, good thoughts, and prayers that getting Charlie's needs and best interests met doesn't require a Herculaean effort on your behalf! (Though, I suspect it will and I'm sorry for that.)


Following your story very closely, as I'm working hard to get a helmet and arm splints *off* the behavior plan of a student new to my classroom. Suspect it's going to be a battle with the behaviorist, but a worthwhile one.

Wish you and Charlie were in MA, I'd take him in my class in a minute (without the helmet.)

Bonnie Sayers (autismfamily)

I know a Mom here in California, similar to Matt and in age group of Matt and Charlie. Few yrs ago the school pushed a helmet on her son and she refused, kept him home for almost a yr while the legal battle went on and finally got him into some private school she wanted. I will see if I can contact her and get the link to the hearing.

Autism's Edges

Oh Kristina, sending you and Jim and Charlie hugs, hope, and hell-raising, in whichever order you'd prefer. xm.


That is awful. I am so glad Charlie has you guys at bat for him. I hope this 'down' passes soon so that you can all be on your way to the next well deserved 'up.'

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