Re: Re: damage to school relationship-Penny

February 28, 2009

Absolutely! Josh reads me so easily! I can try my hardest to hide stress from

him but he always picks up on it. That's part of the problem at school - they

are so worried he's going to hit someone or meltdown if he's overwhelmed that

they are jumping at him at the slightest thing and they are creating a

self-fulfilling prophecy. PTA had an assembly - an author came, read from his

book, and then did a demo of some pretty cool wild animals. They weren't even

going to let Josh into the assembly because they were afraid at how he'd react

to the noise and stuff so they had him sitting in the hallway with his weighted

vest on and carrying a weighted pillow. I was in charge of the assembly, and I

kept looking out the window seeing my kid sitting out there staring at the

wall. I opened the door, and said for him to come in. He and I sat on the

floor, he laid down and put his head on his pillow, and I was rubbing his back

while the author read

and sang songs. Then the wild animals came out and all the kids screamed (the

first animal was a tarantula!). Josh sat up, put his hands in high guard,

opened his mouth really wide like he always does when he gets really startled,

and I started to do what I do to calm him (which likely was going to include

taking him out again since I knew there were more animals to come that would

cause screaming!). Two classroom aides jumped over to Josh, one on either side,

pulled him to standing, and " walked " him out of the assembly. They had him up

and out within less than 30 seconds. I was still sitting there on the floor and

he was out in the hallway with them grabbing his hands so he wouldn't hit anyone

(not sure he even had tried to hit anyone but that's their reactions to

things). He had a substitute aide one day, one that he had last year and liked

a lot. They were working on math and using manipulatives. The teacher walked

by and said, as

she rushed past him, that he had to clean up in a few minutes. He swiped the

manipulatives off the table. The three classroom aides jumped or ran over to

the table, along with the teacher, and surrounded the aide working with him,

asking her if she was all right, did he hit you, etc., etc. She just looked at

them and told them to get away, she was fine, Josh was fine, he was just

finished and did pretty much what the teacher said - cleaned up (in his

own way!). They just overreact to everything and, with his ability to feed off

of other people's emotions, and his inability to properly process a lot of that,

he's having an incredibly rough time!

This whole thing with school is one of those situations where I'm trying to keep

it from him but, when I can't, I explain that I'm frustrated with something at

school - not him, but something that I think needs to be changed (but I don't

think specifying what would help him). He also accompanies me to PTA meetings

so he sees that I am involved with things other than his class/teacher/therapy,

we do lots of stuff outside of school that's just fun (he's a train fanatic so

we do a lot of train hunting - even have winter-time picnics near railroad

tracks so we can see the trains and get snow splashed on us! crazy, but fun!),

I'm doing a lot of PT disguised as games so that he (and I) can get that pent up

stress and energy out.

As for sharing strategies and methods that work at home, that's part of the

frustration I'm having. I think this district, which was touted as one of the

best in IL, has developed methods it uses and if your child doesn't respond to

the established methods, then it's the child's (or parent's) fault. I, and even

my ex, have shared countless strategies that simply don't seem to be heard. I

remember last year, Josh was going through a short term hitting period (he seems

to go through a hitting stage every school year - it usually ends after about a

month and it has come at the beginning of the school year - those pesky

transition issues - but this year school started out really well and then just

tanked for some reason), and the class was having a field trip to a buffet-style

restaurant. I asked if I could come along and lend a hand and his teacher said

sure. Josh and I had been to the restaurant before, so he and I went up to get

our food. I

was carrying his plate and asking him what he wanted to eat, even asking if he

wanted " red " or " pink " salad dressing on his salad and letting him poor the

dressing on his salad. I wasn't holding his hands down, he was walking around

not bothering anyone, he was just choosing his lunch. We sat down, ate, he did

great (even during a seizure one of his classmates had, and an emotional

breakdown by one of his other classmates, and another one threatening to throw

up and running to the bathroom unaccompanied!). His teacher came up to me and

said I totally freaked all the teachers and staff out with how relaxed I was

with Josh - none of them could understand how well he did and how easy it all

looked. After that, she lightened up her attitude toward Josh and, within less

than two weeks, the hitting had stopped and he was a totally different kid. I

have offered the same type of advice and suggestion to the teacher this year but

she has a completely

different personality than last year's teacher, and she is definitely not as

open to suggestion (even ones that clearly work). What I can't understand is

why teachers don't write down stuff that works in a kids' file so future

teachers can see it and learn from it!?!

Thanks for the advice!

Sherry and Josh

________________________________

From: pdearmin <pdearmin@...>

Sent: Saturday, February 28, 2009 8:27:02 AM

Subject: [ ] Re: damage to school relationship-long

Hi Sherry-

I would say to take a VERY deep breath. The stress and anxiety that

you are feeling is something that your son does notice. I know this

because my son just yesterday said " that's enough " when I was talking

to his special ed teacher in front of him. And he has never said

either of those words ever!

I'm not saying it is easy, but the number one goal should be to

remain focused on the goal of helping your son. And YOU are the

number one person helping your son. You can tell that him being at

school is not healthy for him. You are just trying to figure out

why. And that is where you could put your energy. But, you could

also take all that energy and focus on your son and what he needs

when he is around you, recreate the postive experience you had over

the holidays. I'm not saying ignore what is happening at school, but

you are currently not getting the response you want from them using

current communication methods. Take your time to see what is working

at home, and take him out to crowded places and see how he reacts to

the stimuli and what you do to minimize a negative response, and then

share all those strategies with the school.

I'm not trying to diminish how hard this is, and how easy it is for

me to say from the outside. Just know you are not the only one

dealing with this, but we all have to stay focused on what is healthy

for us and our kids.

Take care,

Penny

http://twoplusoneeq ualsfive. blogspot. com/

>

> Hi All -

>

> Weird goings-on here in Josh-land. For those who have been online,

you probably remember that I've talked about Josh and his " fight "

response (as opposed to the " flight " response) to sensory

stuff/overwhelming sensory input/etc. Josh has always done that and

we/I have always been able to talk to teachers about it and come up

with strategies to minimize it or, in most school years, eliminate

it. It takes time, but it works. This year, there was something

that happened during the Fall and I have yet to find out exactly what

it was. Josh had an extraordinarily difficult time afterward - he

was even having nightmares and getting up in the morning

saying " tummy hurt, I stay home, Mommy stay home. " Obviously

something was not right on the school front. I had gotten word from

Josh's bus driver that one of the classroom aides had pulled Josh off

the bus one morning - the principal had come on the bus causing all

the kids to bunch up right by

> Josh's seat and, with Josh's space issues and the change in

routine, he pulled a girl's hair. The aide on the bus said he could

have handled the whole thing just fine but the classroom aide jumped

on the bus, pulled Josh off, and stood outside the bus yelling at him

face to face. Of course, the principal denied anything like that

happening, and the classroom aide said it simply didn't happen and he

had no problems with Josh. The bus driver, on the other hand, said

she was so upset by it that she was practically in tears by the time

she returned the bus to the garage, and the bus aide said he was so

disturbed and appalled by how the other aide handled things that he

was furious. I called a meeting. I said, by the time the meeting

took place, I didn't care what happened really since there were so

many different versions of what happened coming my way and there was

no way to really know. What I did care about was it not happening

again so we

> talked about strategies, etc. I also said that the classroom aide

should not be near Josh unless he does something major to change how

he deals with my son. The aide still is working with Josh. The bus

driver was pulled off the route. Go figure.

>

> There was also a conversation with Josh's teacher that I had last

Fall where she said Josh was acting out so much that it took two

people to hold him down. Gotta tell ya, Josh has never acted out

like that - never! So my gut was telling me that they simply didn't

have a clue what to do with Josh. We had another meeting and

reviewed strategies, methods, words, trigger words, how to

understand " Josh-speak, " all of that.

>

> School decided it was necessary to do a functional behavior

analysis. OK, I'm all for that, let's work together to come up with

a plan and actually write down the strategies we had discussed and

others. My ex and I also said we would take Josh to a

therapist/counselor to see what that private sector professional

could add to the mix. After every session, I would (and still do -

the ex has yet to participate in the sessions) send long emails

detailing all the ideas and suggestions from the counselor - none of

them were ever implemented at school - it was always " well we

haven't.... " I take part of that back, school did try one or two

ideas but determined they were not working (OK, Josh processes things

in his own time - a week or two trying a strategy is not enough for

Josh to internalize it and learn it) so stopped doing the couple they

tried after only a couple of attempts.

>

> Holiday break came in - absolutely no more nightmares, Josh did

great over the holiday season, we had tons of fun and did some school

work along the way. School started in January and things were good

for a couple of weeks. Then Josh started with the " tummy hurt " thing

again, or his head hurt, or whatever (there is nothing physically

wrong that would cause any of that).

>

> We had our p-t conference two weeks ago. Josh has progressed in

math and literacy skills, but has regressed in social and self-help

skills. Hhhmmm... They also presented us with the functional

behavior analysis and behavior plan. The assessment, from my

understanding, was supposed to be across environments - take into

account things from home, sleep patterns, school things, curriculum

things, and so on. Nope. This assessment pretty much said Josh is

hitting. Period. Oh, it did say when and where. Pretty much

nothing about all the circumstances that surround an incident, no

mention (that I can recall) in the analysis of Josh having sensory

integration dysfunction and cognitive delays (along with the apraxia,

global dyspraxia, and so on). We finished talking about the

analysis - the ex sucked up and said he was really impressed with the

assessment and thought they did a marvelous job. The plan included

different behaviors that they

> wanted to stop and, under each one, a series of methods for

dealing with the behavior. For example, under hitting, there was a

continuum from pretty much saying cut it out, to blocking him from

view of the other kids with a movable baffle (there were also things

like holding his hands, to using a " wrong hands " card that was put on

his desk and the baffle put up - you get the idea.) We talked about

some of the various strategies/methods for the various behaviors, and

moved on to another subject (whether to send Josh to jr. h.s. a year

early so he'd be there for 3 years instead of 2 - can help him with

the transition and then the transition to h.s. later but he is pretty

immature so the decision is difficult). We never talked about the

last page of the behavior plan. During the course of the conference,

the PT and OT both had constructive input, the school psych was

diplomatic and had good input, the teacher limited her comments to

academic

> assessment results, school principal had opinion on jr h.s. (he

thinks extra year would be good for a kid with Josh's particular

needs), speech therapist didn't say a word, and school social worker

said a couple of things but I can't remember what they were.

>

> The ex and I left the conference, went our separate ways, and we

both happened to look at the last page of the plan and were both

horrified. The last strategy was that if staff and teacher believe

Josh is a danger or harm to himself or other kids, they can use " CPI

restraints and holds. " OMG!!! If you don't know what those are, plug

that phrase into the search engine. You'll be horrified as well.

So, I went to bridges4kids. org and found a " no-restraint " letter

(wrightslaw has the same letter). I did put in the letter that I

didn't think the assessment was done as fully and adequately as it

should have been and, if the Dist. agreed, it could consider the

letter as consent to conduct another assessment that would include

input from the ex and me, and be done across environments and times.

The ex and I both signed it. I mailed the letter to the heads of

special ed for the district and the school principal. (oh, during

all this,

> I've been working with the head of special ed to arrange a visit

to the jr h.s. Josh would go to - I started out gung ho on the idea

because of the extra transition time but now I'm really torn on the

issue and want to see firsthand what it would be like; the ex is

adamantly opposed because of Josh's maturity level but has said he

doesn't want to be " obstructionist " and would go along with whatever

Josh's teacher and the school psychologist said because " they would

be most objective " - I seem to be getting along fine with the head of

special ed even in light of my no-restraint letter.)

>

> Well, the teacher is now either not communicating with me or is

minimally/snippy in her communications. She wrote on Monday that

Josh went to OT/PT (it's a combined group thing that the ex and I

never thought was appropriate for Josh but couldn't get the Dist to

give him what he was supposed to have which was 1:1 OT and 1:1 PT -

the 1:1 OT finally started in October - after fighting for sensory

based OT for over a year, and 1:1 PT just started yesterday after the

PT " reluctantly " decided the group thing wasn't working for Josh -

duh!), he hit someone and then laid down on the floor refusing to

participate. In the margin of the notebook, I wrote " How was it

handled? " and " What was the activity? " and another question that I

can't remember right now. Her response was " We followed the behavior

plan. " I was livid but calmed down before I wrote back that perhaps

I didn't ask the question properly since the behavior plan shows a

continuum of methods and

> I was wondering which method was used, and that I would like to

know so that I can get a better handle on just what Josh's behaviors

are and whether the methods are being successful. She wrote back

that if I read the behavior plan it would show 7 different strategies

for dealing with Josh hitting and they have, a lot of the time,

success with method #1 (the least invasive/restrictiv e) although they

use different ones depending on Josh's mood.

>

> So, I thanked her for letting me know, that it means a lot to

understand the situation (as if her response actually answered the

question I posed). No communication from her Wed., yesterday, or

today even though there were things that I had written to her that

would have prompted a response (totally not behavior stuff - a funny

thing that happened with Josh, notice that the ex was picking him up

yesterday for a visit, an apology for sending an oversized book for a

book thing they were doing today, wishing a good weekend, that kind

of thing). I'm thinking the relationship with the teacher, what

there was of one, has now gone down the toilet.

>

> Anyone have any suggestions or comments on any of this? I would

ask for a meeting but the state standardized testing is starting on

Monday and I know everyone at school is stressing out about it and I

don't think I should add to the stress level - testing will be over

soon enough. I'm really at my wit's end with all of this so I'm open

to all suggestions (including ones that include " go get a massage and

relax! " LOL!)

>

> Thanks for listening!

>

> Sherry and Josh

>

February 28, 2009

sharing strategies and methods that work at home, that's part of the frustration

I'm having. I think this district, which was touted as one of the best in IL,

has developed methods it uses and if your child doesn't respond to the

established ...

This is exactly why I would get my own behavioralist.

sl

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From: sherry silvern <srsilvern@...>

Subject: Re: [ ] Re: damage to school relationship-Penny

Date: Saturday, February 28, 2009, 7:24 PM