District Meeting

Noah's advocate had a meeting with the district, head of ESE (exceptional student education) today. She called the meeting because there are a number of cases in Pinellas County where an aide is assigned to an ESE student and that aid is not being used appropriately. Noah's case is not different. He can't even participate on the PE field because his aid is always chasing another student. In the classroom, she appears to be a class assistant. Although I love his teacher, I am constantly disappointed in how "Noah's aide" is being utilized. Not to mention that it's not following his IEP. So this was the first step in making some noise. She met with the district and this is what she said in her email to me after the meeting:

Well, I wanted to let you know that our conversation with the district was today and although I don’t think it was completely horrible, I do think they have a different perspective on how the 1-1 aide should work. However, I do believe the district and/or she is trying to get them to tighten up their IEP’s so that they are more detailed.

This is how she explained it to us --- Noah was assigned the aide, the aide is to work with Noah, under the supervision of the teacher. The teacher is suppose to help in guiding her and instructing her but if she is being used for other things than there is a problem and it is probably being abused. When I mentioned that she had to chase after other kids, then she indicated that things were not being implemented correctly, but they are still hell bent on saying that it is assigned to the classroom for that student. What she thinks and wants them to do is document the amount of time the aide needs to be w/ Noah… and I indicated that this was not in his IEP. She seems to think that they should be doing that in the present levels of performance.

We explained that we had a number of cases and she wanted names so she could address the issues directly. Are you ok w/ me forwarding Noah’s name to her.

They say they assign the aides to directly help the student, if they document the time that the aide is suppose to be with the student then I think you will be ok.

Let me know your thoughts.

Well, this is step one. Like she said, not horrible. But still not quite right (or legal). So I am anxious to receive that phone call. If more push back or no change, then I go over her head and finally, the media. I am determined to make this change!!

More to come...

not so Glee-ful.

Exposure to anyone in a wheelchair on TV is a positive thing, but what a great opportunity that Glee had...and missed. A chance to hire an actor/actress with disabilities to play the role. C'mon Glee!!


http://news.yahoo.com/s/ap/20091110/ap_en_ot/us_ap_on_tv_invisible_disabled

my date with Bono.

I have seen U2 many times in concert (Boston, Montreal, Columbus, Tampa). They always put on a fantastic show, but this one seemed even better. I have never seen a stage that was so massive! And no matter how many years go by, Bono just gets better and better.

Joe and I decided to not get "seats" this time and instead fight it out in the pit. I was always jealous of those people reaching for his feet so we thought we would give it a go. Keep in mind, this sounded much better when I bought the tickets-- and the weather was cooler. It was 92 degrees the day of the show and standing outside for hours was miserable. And it was an outdoor stadium so it was a warm night as well. But it was worth it. We were SO CLOSE. We were positioned in the front pit, second row from where he walks. All sanity left my body as I screamed for this stranger that I adore. It was so much fun!

Joe and I are already looking at Miami tickets for next year! Road trip!!

He is the coolest...even if he does have lifts in his shoes!

(dry ice looks like fog in some photos)

Adam.

Bono coming over on the swinging bridge. As it got closer,
I was in awe at how close we were.


Seriously. We could touch him. ahhh!!!!


The Edge coming over the bridge. We were soooo close!


Walking by with his hot sunglasses. YUM!!!

He picked a boy out of the crowd and pulled him on stage.

If that's not enough to make this kid's life...he gave him his sunglasses!

That boy is the luckiest kid on the planet...

Waving goodbye to the boy. As he walked back to the main

stage there was someone there just holding sunglasses

for Bono to walk into. I want that job!!

victory.

Had our IEP meeting yesterday. And a miracle happened right before my very eyes. I pleaded my case with the principal regarding the resource teacher that SUCKS, knowing that he would never assign someone new. It's practically unheard of. But he did. He said that there was a trust issue between me and the teacher and that it would never work out. I couldn't believe it. I didn't even need to whip out the sheets I created that she would have had to fill out daily or tell them that I would be visiting the school at least once per week to ensure she was doing her job. I think deep down, the principal knew what I would do and he just didn't want to deal with it. I was THRILLED.

I tape recorded the meeting to get the district person to admit a few things. She thinks I tape for Noah's sake, but truthfully I tape her because her statements are illegal. Every child's case in a school is different. This district person makes many blanket statements like "we never allow a child to have a one-on-one aid in this county." I-L-L-E-G-A-L. She buried herself. She thought she was making a case for Noah not getting an aid (ie--no one else does so why should he?). But it is 100% illegal to say that. I have it on tape and now I wait to see how I will use it. I am over the moon to have her admit all of this. And I asked it 12 different ways so she could keep saying it over and over again. hurray!!! :)

Another positive thing that came out of this meeting was the relationship that formed between the principal and I after the meeting. I was able to express to him that I don't really drive a broomstick and I just love and adore my son and want him to be educated like everyone else. I talked about Noah's history and I think we really got somewhere. To help that point and thank him for taking action for Noah I dropped off some golf balls for him at school today. Hey, you do what you have to!

So, did it go perfectly. No. But it went really well. Phys Ed is still an issue and Noah's aid is still a classroom aid and not Noah's aid, but I got the resource teacher pulled from his case. And that is a huge feat. I anticipated this being a long, awful fight. And it's over. Now he can have someone in the room that really will help him be successful and spend time with him (more than 9 minutes per day!).

For the first time in a while, I slept good last night.

where to move??

I called Noah's advocate the other day in tears and said, "I am exhausted. I just want my child to get a Free Appropriate Public Education in a school not only where he is accepted, but embraced. That is not in this county. Tell me where to move..." She said "um, Vermont, Maine, NH or NJ." They do inclusion right. I wasn't surprised.

Michelle, I read your comment below and I remembered this conversation and had to post it. you are so lucky you live in a state that actually follows the law. Somehow my county thinks they are above the law.

I discovered the other day that my advocate is filing a complaint with the state DOE (department of education) after her meeting with the district on the 23rd. She is planning on them not complying (not just for Noah, but all the kids she represents) during/after this meeting and is already planning on filing a complaint. After this, I go to the press. You would think (by you, I mean any rational person) that the school and the district would rather follow the laws then go through all of this.

IEP meeting tomrrow. Joe can't come because we couldn't nail down a sitter. I go it alone...

iep.

I dread writing those letters. IEP. For me it's rarely a good thing. An IEP is an Individualized Education Plan for students that qualify. It is typically a long document (Noah's is 20 pages) that detail Noah's goals in every area and any accomodations he may need. It is a legal contract for Noah written by the IEP team. I am a member of this team along with Joe, 4 therapists, the Resource teacher, the General Education teacher and anyone else that would like to attend (which lately has been the principal, the asst. principal, the head of ESE (Exceptional Student Education) in my region and a facilitator. Typically in these meetings most are quiet except me and the last two I listed. The three of us usually don't agree. The team is required to update the IEP once per year; therefore, we have to meet at least once per year. But anyone on the team can call a meeting at any time for any reason. I called a meeting 10 days ago and it happened this past week. Here is the back story to why I called the meeting:

According to Noah's IEP I knew he was supposed to see the resource teacher (someone that provides extra help to ESE kids) for 30 minutes per day, IN the classroom (to be included with his peers) and they are to focus on reading and writing. I had a feeling this wasn't happening the way that it should be. So one day almost two weeks ago when I had a 10am meeting with OT I went to the school a little early to observe. Noah's teacher has an open door policy and is okay with any parent dropping in at any time. So I popped in and was surprised that the resource teacher had not come to see Noah yet. She is supposed to be there at 9am and it was now 9:15. Noah's teacher had hinted to me that things had not been happening the way that they should so I already was concerned going into it. Then she was late. Noah is very structured and if she is coming at a different time every day then that is not good. Then at 9:20 she strolled in. Keep in mind that I did not let on who I was and she and I had never met so she had no idea who this person was sitting in the class that day. I proceeded to watch her pull Noah out of the room with another student, work with him in a closet outside of the room on curriculum that had nothing to do with reading & writing and finish the session in nine minutes. I was confused, and yes, I was upset. I approached her when it was apparent that the session had ended and asked her why she pulled him out. She said "he focuses better outside the classroom." Ok, but his IEP (a legal contract) states you have to see him in the classroom (she hates this because the teacher can watch her in the classroom). I asked her why she only saw him for nine minutes and she stated she would most likely see him again later. At this point my anger was elevated and I said, "So you are transitioning him out of the classroom (transitions are very difficult for Noah) for a nine minute session to teach him nothing that has anything to do with his goals only to transition him back to the classroom and perhaps do all of this again later????" She, obviously, got defensive. She then said he was "difficult to work with and only wants to work on the computer when in the classroom." That was all I needed to hear when I replied, "I don't care if he's crawling on the ceiling, it is your job to work with him." It was then that I informed this woman that the conversation was over and I would be going to the principal to discuss the fact that this school was no longer in compliance with my son's IEP. A violation like this could lead to a lawsuit and the principal would obviously want to avoid this. It was that day that I called an IEP meeting. These usually take weeks to get on the calendar. I got mine in five days.

The meeting was ugly. I won't lie. The resource teacher and I are not friends. Anyone who not only doesn't work with my son properly but then calls him "difficult" is nowhere near my "friends" list. But during this meeting I did something that I vow to not do. It's like my own promise to myself. I try to never allow my emotions in that room. I am there to do a job and that is to get my son a fair, appropriate education. But on this day while I watched this woman LIE right in front of me I yelled and pointed, "YOU ARE A LIAR!!" I meant it, but it was unprofessional and I shouldn't have said it. I wanted to scratch her eyes out. But I was prepared and I dug into what I know to be the laws and the policies of the school. It is like making your case in a courtroom. These people that are all supposed to be helping your son and on his side are all siding with one another, even if deep down I know they know it's wrong. They need their jobs and they protect one another. And it is nothing short of sick. As always, me and the head of ESE go back and forth. She knows I know my stuff and I know she knows hers and we challenge each other. We discussed this issue, the issue of Physical Education (side note: after I viewed the resource teacher and went to OT, I then viewed PE where I was shocked to see the aid chasing another child while Noah sat by himself the entire class.), etc. We always fight about the aid. The aid was hired for Noah, but they call her the staff support (there to be used as the teacher sees fit). This particular argument got heated as I quoted from the many books in front of me...but I still was left with no real answers. I knew I needed to take it one step further. So I told them I would view the resource teacher and PE over the next two weeks. I wanted a staff change for resource but am getting push back for that. We scheduled another IEP meeting for the 12th of November. On that day we will discuss what I saw in the class and what needs to be done. What they don't know is that along with my advocate, I will be tape recording the meeting. I will tell them this prior to the meeting. I am doing this because it will cause something to happen -- either I will finally get real answers (you can't BS when you are getting taped) or perhaps some change. I am hoping to get the head of ESE to admit some things. I have real questions about my son's education and Pinellas county needs to give me some answers. If this doesn't start happening then I plan to take bigger steps.

I am looking at possibly going to the media for a lifestyle piece in the St. Pete Times. There are other parents that are willing to stand with me to do this.

Pinellas county has two types of kids according to the public school system. They have typical kids and exceptional kids (special needs). And they are segregated. Sometimes all it takes is a learning disability and you end up in a segregated classroom. And those kids in those segregated rooms will never get a typical diploma. They will get an attendance diploma. It is criminal. Each one of these children has something to offer, but they are swept under the rug. The state gives the school thousands and thousands of dollars for each of these ESE kids that attends the school. But does the child or even the IVE program see these dollars? No. They have the old computers and the the old desks. These kids get very little of the budget. And it's legal. So, when I go to the school & the district and make noise it's because someone has to. Who is going to stand up for these kids? What is happening here in Florida and in my county is criminal and no one knows it's happening. Well, that's all going to change (can you sense my frustration?!).

More to come after Thursday.

privacy.

I'm sorry if some of you got a notice about me "inviting" you to read my blog. This was done because I had to recently set up privacy settings on my blog. I am somewhat of a private person when it comes to my children. I think because Noah was premature I have always protected him more than perhaps I would have protected a full-term child. Those that are close to me know that it took me a long time to share his photos when he was born. He had so many tubes and wires and I hated what people said when they saw them. Then when he came home we kept him sheltered from the world for two years. An infection could kill him and we, again, were very protective. I guess I still have some of that for Noah and now for Reese. I don't post photos of the kids on facebook and rarely do I email them. It makes me uncomfortable and as his mother, I get to make those choices. I post photos on my blog and for the most part I know who reads it. It was my preference as my children's mother.

When someone close to me recently posted photos of my children on facebook I expressed that it made me uncomfortable. She took them down temporarily only to put them back up with even more photos. Then, to drive her point home (whatever point that was) she invited 17 strangers to read my blog. She then sent me a note saying this was an "experiment" to prove that anyone can see anything they want. While I know this is true, I am aware of who I share my blog with. As many know, my blog is full of not only photos, but accounts of my life. Things that I share with my close friends and family. This purposeful act has left me very hurt, vulnerable and upset.

With that, only those that I invite or approve can read my blog. I am sorry for the inconvenience, but I do want to share my photos and my life with you-- my genuine friends and family.