Monday, October 20, 2008

Dear Noah.......today was your IEP meeting......




and we were about 2 minutes late. I never said anything the last time the staff was late to the meeting.......and no one said anything about us arriving 2 minutes late....until later....which I will explain.

Anyway.....everyone was there. I sat down and we got started. To make a long story short......scheduling a meeting like the school does before a regular school day begins means we have about 30 minutes max for the meeting. This is really just not enough time to go over issues for you especially when there is more than 1 person who needs to express concerns.

This has always upset me that they never want to take any extra time to do these meetings like AFTER school for example........

BUT TWO of the issues I wanted added to the IEP were added and addressed.....you getting sensory things first and second recess inside the school .....and the specifics were outlined.

There was such a rush when it came time to signing the IEP however (as always happens) and half the staff left before I had even signed it......that I just signed it and then took it home to read.......realizing then that they had NOT included in your IEP that you should be allowed to have fidgets at your desk to use at your will/discretion (as long as they do not disrupt the class) and that someone is making sure you are going to and from places within the school as your are supposed to. I felt that even though these things were being implemented for you during the school day.....unless they were in WRITING the school did not really have to provide them....and I am adamant about you receiving these aids/helps you need.

SO I e-mailed the principal asking for an addendum/attachment to be added to the IEP with these issues added. I could sign off....everyone could and it could be attached to the IEP. She feels we should all meet again in another meeting to go over these issues and add them. So that is fine as well. She then said she had no idea I felt rushed to sign anything ...etc...and that because I arrived LATE to the meeting (hence their rush). BULL crap. Thirty minutes is not enough time and I e-mailed her back and told her so. It had nothing to do with the fact that I was 2 minutes late or even if I had been 5 minutes late. The OT took up the entire time and she did not even get to finish what she had wanted to say. How is it possible for anyone else to add their 2 cents?

Regardless I am demanding that your being allowed to use fidgets is written INTO the IEP as part of it.....as well as the monitoring of you during transitions. I also asked that ALL scuffles and such be DOCUMENTED from now on by the school.....including if you came up missing again. I have always felt that should be documented and was a bit surprised so far it has never been documented unless you go to the principal's office and then she writes down something. I have kept track however and told them I would make up a paper with the dates and details of events to also be added as part of the IEP. I am sure they are thrilled about this.

Whenever I have asked for attachments to be added to the IEP in the past such as documentation they act like they have never heard of such a thing and usually flat out refuse to do so.

So we will need to meet AGAIN to add these things that should have been added to begin with.

Today I also picked up on a couple of the teacher's feelings that all these things being allowed for you is such a pain in their butts. I could sense it....and hear it in their sarcastic tone. I don't know HOW many times I heard (even from the OT) that they felt you did not "really" NEED the fidgets but that you were PLAYING with them as toys instead! I was FURIOUS about this but kept my cool and said "oh so because Noah does not necessarily use a squeeze stress ball or whatever in the same manner we would and he instead rolls it over his body or smells it or spins it for the proprioceptive needs he has.......you feel he is just PLAYING with the stress ball as a toy?"

HELLO....that is WHY he needs those fidgets such as a stress ball...he will spin it and squeeze it and rub it and do all sorts of things with it. They felt you were not paying attention and yet they found out you WERE paying attention because you WERE able to do your assignments...etc that had been explained to you while you were using these gadgets. I mean they even complained about you having the one fidget in your hands UNDER your desk or inside your desk.....and they felt you were just playing with it. I think you probably feel you have to HIDE it now...THEY act like you need to HIDE it...and that is not good either. They almost act like you should be ashamed for having to require those special things to get by in the day. That irritates me. They again found out though you were listening to the instructions given in the classroom as you could do the work asked of you.

I don't know how many times I heard "But Noah never used to need ANYthing at all and he sat in the classroom and did fine, etc" and I said "yes but then you had all sorts of issues with him during recess and at other times during the day!!"

The OT actually said she could not see the CONNECTION between you not getting sensory needs met while sitting quietly in a classroom and "acting out" at recess time. DUH??

"Because during class time he is being asked to sit QUIETLY and NOT make any sounds at all (because it will DISTURB others)...but he does that almost constantly at home. He is almost constantly doing some sensory thing here at home....all this keeps him centered and grounded and able to handle the regular day better. In school he was not getting that......yet he was expected to remain quiet.......not fidget or move or do anything to satisfy his sensory needs.....so when recess time came around he was SCREAMING for sensory input hence all the interaction and problems on the playground. I don't understand how they cannot see this or understand this? Especially the OT?????? "

Again they think you are just NOT listening....you do NOT really need the sensory fidgets all the time......etc because you went so long before and had none. AGAIN they are determined to strip away any special needs you might require to fit in with the rest of the class. WHY do they act like using a fidget is such a huge issue? WHY do they feel this is going to be a problem for you later and you need to be weaned off this now? I flat out told them if it became a problem for you later we would cross that bridge when we came to it but what you NEED NOW was my concern and if you need these things to cope in a public classroom setting then you SHOULD HAVE THEM. Over time as you get older you will learn your own ways to cope and if having things out on your desk or in your hand bothers you......you will find something to do that no one will notice and still calm you. I have never made you feel those needs are anything to be ashamed of. They all acted today like it was horrible that you had those needs and you needed to learn to start living without them. What a load of crap. Let's see........let's pick something just ONE of those people at that meeting today feel they NEED every day to cope. I know they do more SOCIALLY acceptable things such as tap pencils or their legs or chew gum or fidget .....or drink coffee.....twist their hair...etc. I bet they would have a hard time making it through their day if they were not allowed to do those things.

THIS upsets me....that they make your needs sound less significant....like they are not truly NEEDS.......that you can be fine without them met.

I sometimes wish I had a way to smack the sense into these people.

I am sure I am not one of their favorite parents. Your aide has NOT been bringing you out lately to the car at the end of the day but instead the inclusive teacher is. She tells me NOTHING about the day and usually sends you on your way to me before I even get up there. I don't like that. I like to stay in the loop...but I think they stopped the aide from bringing you out because she was divulging TOO much information to me. Well I need to know when you misbehave in class. I want to know.

As usual today I felt like I was FIGHTING to get you just the basics you need to sustain yourself within the classroom....and I have to say sometimes I wonder if it is worth all the hassle as it would be easier to just be in charge of it all here at home as I did before and you thrived.

I also asked your teacher about you getting a D on some reading paper where you have to write like a letter response to something you have written. You have STRAIGHT A's on everything....including this class but that D will bring it down to a C. I asked about it.....said I had never even seen the paper and I asked why you had gotten a D on it. She said because you were to give full sentence responses about what you FELT or how you were thinking when you read the story......and they all know EXPRESSIVE language is still a huge issue for you though you are improving....and WRITING those expressions down is even more of an issue...and combining the two......well. I e-mailed her and asked to speak with her about ways we could compensate for this as you need extra help and instruction in this area.....they all know this. YOU cannot just be given a sheet and say here......do this....and be expected to do it. IF you were typing it you might be able to. Telling even ME how you FEEL about the simplest of things is not easy....and with you everything is cut and dry and very BRIEF and straightforward. I wonder if you will ever be able to do those essay answers!

Our former social worker is going to come out to talk with me Monday here at home to let me know what other options might be available for you. No commitments........I do not have to reopen your case with her. BUT it will be nice to touch base and see what options might be available and she can also work with the school to MAKE SURE they are doing all they are supposed to you for you with the IEP needs. I like that part.

I love you Noah........and I continue to wonder if it will ever get easier to get your basic needs met within a public school.

Mommy
XOXOXO

5 comments:

Betsy said...

My eyes are rolling....I just want to shake them all! Those squeezy stress balls are made for company executives in high rise offices...they are real fidgets for real people....and they work!
I'm always amazed at the things that come out of the mouths of the "professionals". You would think that they would want to use whatever helped you cope in class....it makes their lives easier, too! Why don't they get that..the OT especially? Eyes still rolling...

Osh said...

Melinda, our IEP meetings always took at least 2 hours! You have to demand they be held after school instead of before. You need to have an advocate with you as well. One thing I did insist on was that the public school staff (any teacher/aid that came in contact with Evan) have some type of autism training...a lady came in from our CESA office and did a small workshop for one school he attended. I am furious that this PUBLIC school is treating you and Noah this way. I am hopeful that your Social Worker will have some answers for you.

As for the D, is Noah seeing a Speech Therapist for the pragmatics of language? His teacher needs to understand kids like Noah have a very hard time with that concept and maybe the lessons need to be modified for him too. (once again put in the IEP)

I will keep praying.

Tanya @ Teenautism said...

I think dealing with schools is one of the most frustrating things we parents have to do. It's always such a fight. I'll be thinking of you and hoping things improve soon.

Old Lady Lincoln said...

Sounds like the school doesn't want to take the time to work things out to Noah's best interest. Hope the social worker has some ideas.

Isla said...

Hope things work out for you things seem tough for you, I'm not religious but my thoughts are with you both