Friday, April 1, 2011

IEP's for Rett Syndrome and my Abby

Hell hath no fury like a woman scorned....

No one is more frustrated and pissed than a Rettmom fresh out of an IEP for a girl with Rett Syndrome.

After our meeting..the 4Th of the year I think...My head hurt. I was getting dizzy from holding my breath. My fingers hurt from gripping the steering wheel. I felt like one of those old Felix the Cat clocks..showing my age..tic tic tic with my eyes rolling to and fro.

I need to change my standard operating procedure for these things. Last time I went in thinking I was prepared. Thinking."they" actually got it. I had given them books,literature,papers,studies,videos...

I even went in thinking..almost nice.. Don't flip out. Don't scream..that wont get you anywhere. Didn't work. I was hateful. Almost mean.

After that meeting our super Neurologist called the AT and spoke to her for several hours. She told me she was nice and didn't understand at first but she did now..I thought she was right. I don't know how you cant understand that you cant make a Rettgirl use her hands. You are not going to get a non verbal child to speak. A child that cannot use her hands will not point at a picture or press a button. She is no less intelligent than her peers..the ones with devices they carry around with them because they can press the buttons and point. She looks at what she wants. It's called eye gaze. Videos,books,papers....not like I'm making this stuff up.

I was told about a month ago that the district would be purchasing a Dynavox Eye Max for the classroom...for the classroom because..well lets face it..they have to say its for the class. This one kid isn't worth the money and doesn't have the same basic right to communicate that her peers do. I had requested a My Tobii. They work great with Rettgirls and I have seen Abby use one.

So I go in and sit down...There are 3 people not there that I had been informed would be including a district representative and her Kindergarten teacher.

Be nice..don't verbally shred the AT like you did last time Terri. Act like a 41 year old mother and advocate. Not a rabid banshee for crying out loud. Let them talk. Hear what they have to say. Don't say no to everything and don't get pissed!

I have no idea where it went sour...probably when the AT opened her mouth. She actually said, and I quote," I am going to have to disagree with your Neurologist. Just because Abby was able to look at pictures on a screen doesn't mean she can comprehend what she is looking at. I saw no cause and effect. There were no questions and answers. Just Abby looking at pictures on a screen. It doesn't prove comprehension."

This after talking to the Neurologist. After admitting to her that she had never worked with a child with Rett Syndrome and didn't understand eye gaze. She then talked about tickling Rettgirls to get answers. The ever brought up head switch. Abby is the first Rettgirl she has ever dealt with. She observed 2 at an AT conference last year at a booth for a few minutes. Now she apparently knows more than me and one of the worlds authorities on Rett Syndrome.


So what is she thinking? I think its a my way or no way kind of thing. I do AT so I know more than you. I'm thinking I'm never going to get anywhere here. I really don't think I can reach these people.

Rett Syndrome is what I do. I live it, I breath it.

The consistency thing kept coming up...HELLO!!!! They want her to be consistent and scoffed at my revelation that sometimes a blink while looking directly at you is yes. The next time yes is her putting her hands up in the air in the touchdown pose. Sometimes it's a smile while she hugs herself. It all means yes... how about some quotes from the worlds authority on AT and Rett Syndrome (Linda Burkhart):

".....Language components: motivation, processing of language in
activity, pragmatics, processing of questions, auditory filtering,
processing of symbol set, syntax/grammar, attention to task, memory
• Juggling means that the child may only have some of the ‘balls in the air’ at
any given time, and having all the ‘balls in the air’ will be rare. This explains
why performance is so inconsistent and can not always be predictably
Need to take successes and move on, as opposed to requiring repetition of
the task over a given number of trials
• Provide opportunities for repetition/practice within natural contexts
without pressure. Use variation and natural motivation
• Recognize the difference between Testing and Teaching
• Children learn by doing
Emphasize Experience - not drills
Parallel Programming:
• Coordinating all components of a task on an automatic level is extremely
challenging for children with Rett Syndrome
• Child can become easily frustrated
If we wait for everything to develop in a coordinated fashion, we will be
waiting forever...."

I have given them this literature 3 times. Every member of the team and the district. Linda Burkhart has never met Abby. The first time I read this paper I jumped up screaming, " YES YES YES" It was like she had met her and had wrote the paper on her.

How did I handle all this? Dirty looks. Glares. A couple mutterings of "Whatever you don't listen to me anyway."

Then I made her functional skills teacher cry...Totally not my intent. I adore that woman but I was fed up. But, If they are not even going to try to work with ABBY..i,e. INDIVIDUAL EDUCATION PLAN..then there is really no point in her being there. SO I put half days for next year on the table. If she is just there to socialize and get only the bare minimum therapy then it might as well be playtime and respite for me.

The PT refuses any more than 30 minutes a week. Abby's scoliosis curve has gone from 17 degrees to 34 since August. I already doubled her Speech and OT time.

Why is a woman that stops by a couple of times a month in charge of my child's education?? Somethings gotta change. If that means keeping her at home and doing it myself then by God that's what I will do


Sam said...

I'm from England so may be totally wrong here, but can't you sue the local authority for the right to freedom of speech? They have the funding to provide equipment so Abby can communicate, yet they refuse to acknowledge it is a valid form of communication.
If they don't believe eye gazing is a valid form of communication they should see my Lily-Ann, she can demand things just by the glance and the expression on her face.
I hope you can get somewhere with Abby's education, the rest when she is in school could make a world of difference to you

Ann Marie said...

I'm so sorry, Terri. You work so hard for Abby. I hope they can give her a challenging place to learn. I know how frustrating it is not being able to find the right placement. I have considered keeping my Abby home next year as well. It is so exhausting trying to make people understand our girls, especially when they think we are just "seeing what we want to see" because we're the mom. They just don't get it. I hope you get someone who is open minded and sees all the amazing things your Abby is capable of. Good Luck!

Dawn said...

It makes me so angry and frustrated to read about the doubt that they have in Abby. I can not even imagine how you feel! I don't understand how these people can be so educated and ignorant at the same time. Big hugs to you and don't stop giving them hell!

Anonymous said...

Hello, just to let you know technically the school district is out of compliance if they do not have a general education teacher or a district representative present. You can ask for mediation if they violate your rights. You need to check out the proceedural safeguards booklet from your state SPED regs. You also should check out wrights law on the web and also the IDEA laws. When the team at school is out of compliance and you as a parent know it, you would be amazed at what you can 'get' from them. Hope this helps you!