Thursday, November 17, 2011

IEP..... again

Today we had another IEP meeting. Today we talked about Makenzie's talker, her mount, and what needs to happen over the next 5 years to keep the talker working properly.

I have begun to really hate these meetings because I love Makenzie's school. I have tried to really hard to to be level headed. I have tried to compromise and work within the system. I have tried not to push too hard but at the same time hard enough to get Makenzie what she needs. I am an advocate.

Sometimes being an advocate stinks. It means ruffling feathers of people that you really like. It means offending those that are trying to help you child. It means asking for things that are hard to get and the district does not really want to give. It means not taking no for an answer. It means speaking louder and louder until someone listens, it means disagreeing time and time again. It means standing your ground. It means offending when that is not your intention at all. It means compromising but knowing when there is no room for negotiation. It means knowing your child's legal rights inside and out. It means defensive professionals. It means feeling unheard. It means having an opinion that doesn't count because you are just the mom. It means many e-mails and phone calls and it means many many tears. Sometimes being an advocate for your child stinks.

So this week ended with many of the above during another IEP meeting.

This morning before the meeting I called our seating guy to ask him if a static mount could be put onto her chair at school. His answer was yes. I also called Dynavox and got information on their extended warranty.

During the meeting there were feathers ruffled. There were defensive professionals. There was no room for compromise. At the end of the meeting the team had agreed to mount the talker to her chair. I gave them the info from the seating company and then we moved onto the warranty issue.

Makenzie's talker comes with a year warranty that expires in October 2012. Dynavox offers extended warranties to cover any damage to the device after the first year. They are a bit pricey but not near as pricey as the talker itself. I asked that they pay for the warranty after the first year. Apparently they are going to do one better and provide Makenzie a district owned talker for her to use at school. I guess that is one way to fix protecting Makenzie's talker! I'll take it.


I love Makenzie's school and when I say that, I really do mean it. Makenzie loves her school, her teachers, and her friends too. They have bent over backwards to give her everything she needs. She is safe, she is loved, and she is surrounded by people who believe in her

Makenzie is in a class of her peers. She has twenty something 6ish year old friends that learn with her and are being unknowingly taught the amazing lesson of acceptance. They are changing Makenzie and Makenzie is changing them. It is one of the most amazing thing I have ever seen in my life.

The Principal in easy to talk to and very available. He is never defensive and always understanding. He has gone to bat for Makenzie over and over. I have never ever meet a school administer who is so kind and willing to do what ever it takes.

Then there is her classroom teacher who gets it. She includes Makenzie in all of the class activities. She has asked me to come help in the class and when I find a way to make it work I will be there! She is concerned about the sidewalks when it snows and making sure Makenzie does not feel left out when the other kids are eating their snack. She makes my girl feel special.

Her aide. Well I have never ever met someone who does not have a child with severe special needs understand my daughter like she does. From the first time I met her I knew that she would be wonderful with Makenzie. She is a great communicator. She tells me each afternoon what Makenzie did and how her day was. She gets just about as excited as I do when Makenzie does something new and wonderful. She is doing an amazing job of learning how to incorporate Makenzie's talker into her day. She is teaching Makenzie how to learn and communicate. She works with what she is given to use and has a great job with less then adequate tools. She is protective and makes sure Makenzie is safe all day. She believes in Makenzie and lets Makenzie know this all day, everyday.

Last but not least the nurse is amazing. I have never met a school nurse with so much knowledge and experience. She is one of the main reasons I do not worry about Makenzie while she is at school. God knew I needed someone as good as her to trust my beautiful daughter with. She cares, I mean really cares about all of her students. Makenzie is in the best medical hands while she is at school.

There are many other people that work with Makenzie at school. I could be here all day but I have a meeting to get to across town.

Now we wait for the mount to be ordered and put on Makenzie's chair. Once that happens Makenzie will be able really shine!

Believe.... Prayer Works!



Anonymous said...

I am glad that everything went so great. Congrats that the meeting went smooth as well. God bless :)

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