Tuesday, March 6, 2012

A VOICE for Abby

For several years now we have been wanting and fighting to get Abby an Eye Gaze Speech Communication Device.

For a while I fought and fought through the school district. While they will admit and write in her IEP"S that she communicates through Eye Gaze...when it comes to trying to get her one, they fall back into the old routine of her not being consistent and not proving what she knows. I can give them every book and paper in the world on Rett Syndrome and it is just not happening.

I have shown them videos of her looking at answers. I have brought educators in my home. They just don't get physical Apraxia. I guess you can read about it. Study it but I don't think it's something you really get until you have a child with it.

I have asked several educators and Administrators what it means and they know that they have to wait 30 seconds to 2 minutes for an answer. When you actually watch them ask....they don't give her more than a few seconds. There always seems to be a person in the room repeating the question over and over no matter how many times you correct them.

Over the weekend a friend got Abby a toy. It's a Dora globe by Vtech that plugs into your TV. You help Dora explore the world by pressing different continents and using a simple joystick. We sat down today and I held her hand over hand and tried to help her follow simple instructions.
I sat there why she tried to pull her hand from mind over and over again. She growled and tried to bite at me until she went stiff and started to tremor.

When we turned on Dora the cartoon she stood in front of the TV and noise pointed at Swiper and Dora. She turned in circles every time they counted.

She has to have an Eye Gaze device. We have tried her before on a Dynavox and a Tobii c12 with eye.

She is seven.She should be able to play games and play music. She should be able to switch channels and answer questions. A very hard...impossible task when you have no use of your hands. When you are totally and completely non verbal.

Tomorrow I am going to make an appointment to have her tested. I have no idea how long this process takes. A while Ive heard.

So here's the deal. I need your help. Or I will. The My Tobii is the best device for her. It with a stand and the eye camera is near $20,000

A friend of mine obtained one for her daughter several years ago. They absolutely love it. I have to say that her daughter is more physically disabled than Abby is and she can absolutely use the device to carry on conversations. Make requests. Play music and videos and do her school work.
The issue is that even if you can get insurance to pay for it they almost always will not pay for ALL of it.

I have heard stories of them not paying for the stand, which is $1600.00. I have heard of several cases where they won't pay for the camera that catches her eye gaze and uses it as the mouse. This one is $5,000 extra.

Hopefully we can get them to pay for all of it but if not I will need anyone willing to help me hold a fundraiser to create a Special Needs Trust for Abby.

I think if we all pull together we can do it.

Watching my daughter fall to the floor, stiffen up and shake because I am trying to get her to use her hands is something I don't care to witness again.

A friend in New Jersey just last month was able to raise enough funds for the entire package in one night. Now she defiantly has wealthier connections than I do so maybe we have to do more than one.

I would appreciate anyone that wants to sign on. I will keep you all posted.

1 comment:

Shannon said...

You should check into the ECO2 with the Tobii Ecopoint eye gaze system.