Post-IEP

We asked for an out of district placement and that a Functional Behavioral Assessment be done by an independent evaluator. Charlie's records are being sent to a large autism center and we will be visiting it. 

And I got completely emotional and was..........difficult. It just all came out, whatever I've felt since I first burst into tears when Charlie's teacher, on a home visit, first mentioned the possibility of placing him in Bancroft back in October of 2008.  I was not a model IEP parent or advocate.  I was a mother whose son is as I write about him here, not a child who is put into three-person "protective holds" and a helmet with a face mask. I was not as effective as I should have been. 

Jim said plain and simple, the district failed Charlie. It has and we just want him out. It looks like that's going to be what happens.

------ 

At the meeting were:

a supervisor of special education

Charlie's teacher

Charlie's case manager

We were not informed that the following individuals would be at the meeting. We had asked for the ABA consultant to be present, but it had not been made clear to us that she would indeed be.

the ABA consultant 

occupational therapist who did an evaluation of Charlie that we were not informed about

speech therapist who did an evaluation of Charlie

physical therapist

Comments

[Emily]

Kristina, I'm so sorry you and Jim and Charlie had to go through this trauma just because of a bureaucracy and personalities who didn't want to do what was best or right for your son but what was best for themselves. I bet you were effective in exactly the role you describe: a mother whose son has been mistreated, woefully and indefensibly. I don't know how you've kept from doing that as long as you have. It's good that you showed them that there is a heavy emotional cost to their behavior. I admire your restraint to this point, and I am glad you let it out all over them. Good. I hope that makes them have at least a little bit of lost sleep over what they've inflicted on your child and on you and Jim. I know you don't like to focus on negativity, but I'm just medieval like that, so I'll do it for you.

You all remain in my thoughts. I'm hoping hard that his new "placement" will be a bright, helmet-free, restraint-free experience for him.

[Beth]

Hi Kristina-
Don't be hard on yourself for losing your composure. I don't think it is possible to maintain your composure when your baby, whom you love more than the air that you breathe, is being treated so poorly. They have failed him. Period. And I totally understand why this would make you upset.
Try to look ahead to a brighter future for Charlie without that dreadful helmet. He deserves better than what they have been giving him.

[Jennifer]

Kristina, Sounds to me like you did the right thing by expressing your feelings and opinion on the situation that you all have been dealing with there and by getting Charlie a different placement. Does that mean public school in another district or a private school? I'm not familiar with how that works. I hope the new placement turns out to be better than you could've hoped for.

[farmwifetwo]

{{{{{HUGS}}}}}

The only mtg that ever got to that point was the one 3yrs ago now.. and I held it together, barely, until they left the meeting... time flies, eh??.. when we kicked IBI/ABA out the door.

I made them hold it at my FSW's office at Community Living (disability people) - neutral ground - with her present... they even brought the Director of the Program with them...

We won in the end.... But I still get the shakes when I think about it.

Since then it's been much better. It's not perfect... but I'm not complaining... well, except when the do something stupid :)...

May your next placement, be better too.

S.

[a parent]

Oh, I'm so sorry. I think I have lived through a very similar meeting. There will be more, no doubt, to settle things. It's hard when you feel that you know your child and you know that you can speak clearly for them, but get a lawyer/advocate before the next one. The difference was unbelievable for us.

Really, I'm so sorry, because I remember that pain. The recollection brings tears. Be strong - this too shall pass.

[Hai Dang]

I am sorry to hear it had to end that way. I am glad you let them know how you feel about their inhumane treatments to Charlie. They failed Charlie. I hope things will be better at Charlie's new school.

[Rose]

It's over, time to heal...things will be better!

What they wanted to do to Charlie was monstrous, and for their own good, not his. I would have passed out under a helmet like that.

[Kristina Chew]

Trying to process here........ It was me who just let all the emotion poor out. Jim talked about how Charlie is traumatized after the "three-man protective holds" and noted afterward that they just looked at him disbelievingly after he said that.

Plan is, Jim is the advocate next time (which will, I hope, be soon).

The new placement would be in a large center that has students from many towns. The supervisor of special ed pointed out that we could have had Charlie placed there in the summer and we explained our reservations, and that putting him there now is only an improvement because his current placement is what it is. Supervisor of special ed said they might not take him without the helmet----we asked for an independent FBA and were asked to provide names of people. We did so, though the district said they didn't see why they should start doing it as Charlie will not be in their school anymore. We insisted.

[Frances]

I'm so sorry -- it sounds more like an ambush than an IEP meeting.

I hope whatever happens is best for Charlie and involves no three-man protective holds (that makes my blood run cold, and I'm not sure any parent could maintain composure hearing those words.) It seems like district representatives so often lose sight of the fact that they are charged with doing what's best for the student. :-(

Finally, I wanted to close with an idea that Rachel Coleman gave me. She recommended recruiting a third-party advocate -- another parent who is familar with the IEP process and your child -- to attend. I'm going to give it a try, and I'm passing it on to other IEP warriors out there.

In the meantime, my thoughts are with you, Jim and Charlie as you continue to fight the good fight.

[Kristina Chew]

thank you----and when the phase 'three-man protective hold' is said as "just what is done,' as if that's business is usual---no!

We've been advised throughout the whole process by an advocate. But next time Jim is going to do the talking. I think I have said my piece!

[mamacate]

You know, I was composed as heck through a two-year battle regarding restraint & seclusion and honestly, in retrospect, they might have reacted a little more quickly if I had lost it at least once. I remember this one meeting, at the very worst of it all, where the sped director sort of squinted at me and said, in a quizzical tone, "you're so calm..." It took them an entire school year to move him into a more appropriate program (which I wanted) and they wasted an enormous amount of time trying to put band-aids on a program that was bleeding out, and let my son pay the price. That's a long way of saying that being real, and showing people what this really means to you and to Charlie and to Jim, has value. I'm not saying to be manipulative, but I think showing them what their day-to-day decision do to us isn't necessarily a bad thing.

Keep the faith, even in the shape-up.

[Kristina Chew]

@mamacate, thank you. & then some.

we want to get Charlie out as soon as we might, though the next step in the new placement is not going to be easy at all. it could be far worse---have heard from other parents with children there that are concerns about communication (none regularly), administration that's not easy to deal with (I guess that would be nothing new). but he has to get out of where he is.

I guess the band-aids have all fallen off with our program.

If we're all together in the shape-up, we're gonna be ok.

@Hai Dang, thank you so much your words----I really can't bear seeing that helmet anymore or Charlie in it. I thought I was being melodramatic to show a photo of the inside, but I don't think anyone would have bothered to look if I hadn't.

[a parent]

I think it's clear that parents aren't taken seriously. I really don't think it will work out better with Jim talking than you. It isn't about composure alone (though that's important) - lawyers and the implied threat of legal proceedings, if the school district isn't following the law 100%, is all that's going to work when things have gone this poorly.

I wish our lawyer was available in NJ, but you need a lawyer who has successfully worked with your school district. I think you're beyond the point of advocates.

[Kristina Chew]

I hear you. Having a post-IEP de-briefing here tonight.......

[Catherine]

I'm sorry the meeting did not go well. As a teacher I've always had to sit on the other side of the table. I've always walked a fine line between supporting parents but not getting in too much hot water. Believe me I've been scalded.

Special programs such as ABA come and go. They all have good points. I get nervous when a program says their's has all the answers. What worked yesterday or with another child may not work today with Charlie, kids grow and change. It is really just a lot of common sense, having all sorts of tricks up your sleeve and most importantly, everyone involved being open to listening and sharing for the good of the child.

I am so, so sorry they did not listen.

[Christine]

Thinking of you, Kristina. I hope your guys get in some good bike riding or kayaking this weekend! You all three deserve it!

[feebee]

I think you guys are spectacular.

[Liz Ditz]

Oh dear -- I have been rendered speechless by the helmet and the "take downs". To me it seems that the school is somehow causing Charlie to lose his composure, and then punishing him for these losses.

"All behavior is communication"

I especially like Ross Green's approach

"Children do well if they can" http://www.ccps.info/index.html

Holding you, and Jim, and especially Charlie in my heart.

[Jasmine]

Reaching out through physical and virtual space to give you a great big hug!! I hope you can forgive me for all that fluff I said earlier about "level-headedness" ((blushing bright red now at my own naivete)). You knew before you went in there that this was a team who did not seem to care much about what the parents had to say. Hoping now for as smooth a transition as possible, and for much better days ahead for dear sweet Charlie!!

[Kristina Chew]

I wasn't a very good listener, Catherine. But then I read and reread the FBA the district did (without our consent) and feel like I'm, well, hitting my head against a wall when I see "escape, attention" and 2 other things listed as the only reasons for Charlie's "non-productive behaviors." There have to be other reasons for what's going on, there are other reasons, and only seeing Charlie in those fixed categories, limits a view of him and of what can be done.

We've tried repeatedly to explain what we did this summer to help Charlie be without wearing the helmet. There's been no response or acknowledgment. If something has worked, why not try it......I think that lack of a response just, well, really irked me.

ABA has helped Charlie but, more and more, it seems to be something that helped him when he was younger. He needs something different now.

[feebee]

I wish you guys could tag team somehow and keep him home. Peaceful easy feeling boy like this summer.

I homeschool my six for many reasons, but foremost for Bede is because there is NO way I would put him in school here. Nope. Also my oldest daughter is definitely on the spectrum, mild, Aspie end, and my third daughter likely is too.

People say I have all this energy and patience and so forth for homeschooling but truthfully it's because I feel certain that fighting the school system would be so much harder than what I do. I'm not saintly, I'm pragmatic.

[M]

i just feel sick reading about their disdain towards your input. when a three man hold makes more sense to them than a dialogue with devoted parents...it's feels too much like an alternate universe, a nightmare universe.

and it always sounds like they are calculating, "what's the right aggressive move here?" like that is their default setting, which punitive maneuver to utilize. intead of: how do we protect this young man's heart, his dignity, happiness.

they see helmets and holds, not the genuinely wonderful young man sitting in front of them.

it's unfair, kristina. really hard to process this.

[karen d]

I'm so sorry. Jim is right -- the district has let you all down and there HAS to be someplace better for Charlie. xoxo

[a parent]

A couple things come to mind when I think about a path out of what seems a very difficult position:

from wrightslaw.com - "the new Part B revocation of consent rule allows parents to withdraw consent for special education services at anytime" - I think this gives you an instant out of an overwhelming setting

Then you get to the question of what you're going to do until you can find a good setting. I was wondering if the new ruling (again from Wrightslaw.com)about private school reimbursement might also pay for a leave of absence or reduced working hours to allow you to continue doing what worked over the summer.

It might take a while to find a place that you're philosophically in agreement with - I'd say consider some places that are open-minded as opposed to "experts" about autism. If you've figured out something that works, anyone that's willing to follow your lead ought to be able to educate Charlie. I'd think an option might be a smaller school with an aide that could allow Charlie to take his time in transitions (as you've been posting about doing). Less strong-arming him into doing things, less behavior modification (at least for the time being).

[Bonnie Sayers (autismfamily)]

what a weird phrase to use at an IEP meeting
'three-man protective hold' I would need a demonstration before continuing with the meeting.

Good that you are in contact with parents at the new location you want to send him, hope the bus ride and transition when it all starts is not that hard on Charlie.

[Jen]

Being as one of the essential characteristics of ABA is effective, improving behavior to a meaningful degree, calling that ABA is a sham. Ship (yes, I am substituting a letter here)like this claiming to be ABA gives good, makes it all the more difficult for people to accept effective practices.

[Jen]

I feel funny about posting after myself, but oh well, here I go.
You definitely want a meeting before the new placement. Yes, they will have to do their own once he's been there, but you should get one before he goes. Make sure that everything he has is on paper in the correct place. When I sat on the side of the school, I once took something from a kid because his previous school didn't list it in the correct place. I put it in the same place as they had it. He left that day with it, and came back the next without. Not exactly like I could have called dad at that point and told him not to agree when he got the final copy, but I wish I could have.
I've also been to some meetings and sat on the parents' side, not as an advocate or anything, but I knew the child, and I knew the laws. It was a friend of the family. I had no emotional investment or financial benefit. We actually had a posse of us go in there with the mother, who otherwise, would have went alone. I went, my mom went, and an aunt went to that meeting. We meant nothing hostile by it, simply for the mother not to be in there alone. The school district seemed rather intimidated by it though, and went to get the higher up admin to sit in the meeting. An extra "warm body" on your side might be a good thing.

[Moi]

They have done that stuff to me, too. So I paid them back, I brought a paid advocate twice, now our BSC goes with me (Bug's "mentor/big brother"). To have that extra ear on Your side is to have a witness for You and for Charlie. Everyone else works for Them.

They are the Enemy and deserve to be treated as such. If they weren't the Enemy, how come you weren't notified about all those people, huh? Enemies.