And the gloves are on…

…and by gloves I mean, boxing gloves. I’ve tried hard to keep them off but enough is enough.

Let me start by saying that we finally have Nathan’s dynavox with eyemax ready to go. It took us months and months but it’s now up and running.

A couple of weeks ago we had a meeting at Nathan’s school to go over his communications goals. Ronna, who has been working with Nathan on communication, came with me. When we got there, she started boasting about how well Nathan is doing, how consistently he is communicating using various access methods, how smart he is, how much intent he has to communicate. The entire group sat there and stared at her as if she was talking about a different child.

Ronna was super enthusiastic and told the school that she thought Nathan would do great with a Tobii, as the new eye gaze system on the Tobii is amazing. They stared at her, once again, as if she was nuts to even suggest it.

They proceeded to tell Ronna that Nathan was displaying very poor communication skills, that he wouldn’t use eye gaze effectively to make choices, that he was not consistent with his yes/no talker. Ronna and I couldn’t understand it as we’ve witnessed something completely different.

They then told us that we need to start by giving him 2 choices on the dynavox and start with baby steps. Ronna was aghast, as she felt that taking him so far back would frustrate him and inhibit his desire to communicate. The school administrator then said that we had to do it this way as the school has goals and that they need measurable results. I lost it and basically expressed my extreme distate that they want to teach him in a way that caters to their needs, not his, and in the meantime, they will “lose him” as he will not have any interest in communicating.

To make a long story short, I ended the meeting by asking for another IEP meeting that I would attend with my advocate. So now we have an advocate on board, who has tons of experience with children with special needs. Her name is Sharon Grandinette and her site is helpingkidsbrains.com .

So now the gloves are on and I am ready to come back with all of the help we need.

I will clarify and say, I LOVE Nathan’s teachers and my issue is not with them. His main teacher, Mrs. Belinda, is absolutely amazing. She is truly devoted to helping Nathan and is doing everything in her power to help him. I don’t know Mrs. Tania as much as I know Mrs. Belinda, but she also seems genuinely interested in helping Nathan and she adores him. The teachers are wonderful, it’s the administrators that I have a problem with.

Anyways, I will keep you guys posted! In the meantime, I am once again submerged in the world of augmentative communication, of which I know very little, and now have to figure out how to give Nathan a voice using this new techonology!

Comments

  1. Oh man do I feel your pain on this one! I have been fighting the same battle now for over 2 years.

    This year seems to have started out a bit better because there are a few specialists that know more then the prior school she was at and they are will to take ideas from Makenzie’s home therapists but it has still been on the frustrating side.

    I used to think that it was me who cause all the drama but I do not care any more because all I am asking them to do is believe in Makenzie and give her an education that meets HER needs!

    I am so sorry that you have to deal with this but know that you are so not alone! Hang on and keep fighting for your utterly amazing little Nathan!

  2. I had the same battle about 2years ago. I was beaten. This is the reason why Oliver is at home. However, in our case the administrators were great but not the rest who did not understand that Oliver needs to work a lot and not only look around.
    From the very beginning I realized that one of the main issue is FRUSTRATION. That I have to keep Oliver on the track. I have found out that lots of children gave up due to a frustration, due to a misunderstanding. Nobody sees or looks what children are saying. Listening is not sufficient in such cases.
    When I read stories like yours, I always don’t understand why some rules, some strange goals have a priority. Unfortunately, the child is often the last one. Maybe you have a chance to change. Not me in our country. Maybe yes, but for the future, not for Oliver. And there are not many mothers like me. So, I prefer to work with my child alone and travel a lot to visit the specialist, even I know that my best is still not the best.
    It always make me upset, that people working with children with the special needs do not follow and understand our view.
    Fingers crossed for you and Nathan.

  3. http://Sally%20Fraley says

    WELL SH**!!

    so praying!

  4. You go girl! Fight, fight, fight! Itys frustrating when people who have “worked” with sn kids for years know less than the parents. Unbelievably frustrating. Its one of the reasons I am considering homeschooling & I havn’t even been to an IEP meeting (yet!)

  5. Cj’s school does not think he is ready yet for an eye gaze system as well! They have been doing the baby step training too. I know he is ready! I test him all the time at home. This year is going to to be my first REAL fight with his IEP! I told them I am bringing Cj to Children’s Hospital for a screening in their Communications Lab. Then I will bring his ST in as well. (I am really interested in the Tobii). They let you bring home the device they think would be best for your child for trial. Then I will tell the school which one THEY should purchase! He is 7 years old now and it is about TIME!

  6. Thanks for the replies and support!!! It is sad to have to fight for our kids but unfortunately it’s just reality. I also understand that they don’t live with Nathan and see him the way we do. It’s just another step on our journey.
    Pam – I think your fight has totally worked out, it seems Makenzie is in a great setting and I hope Nathan can be in an inclusive setting like Makenzie is. Hopefully next year.
    Sally – thanks!!!
    Carla – I went in thinking the school would be a disaster but they’re actually not too bad. His teacher is excellent! It’s just the admin part that is a problem. So hopefully LM will have a good district and teachers. Let us know when the time comes!
    Lisa – the Tobii is AWESOME. Ronna brought one for Nathan to try and it kicks butt. I wish we’d gotten that one instead. If you can trial it, check it out, you will love it. Make sure it’s the new one though. I hope you are able to get the school to provide what Cj needs! I’ll pass on what I laern during our battle.

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