Eye Can Fly

Last night I dreamed that I was invited to the final IEP meeting for Angela, the daughter of the We Speak PODD family, that I spoke of who passed away yesterday. It was held in an airplane flying through the clouds. My being there made about as much sense as any IEP meeting. If you are unfamiliar with IEPs (Individualized Education Plans), these are the documents that the school is supposed to develop, with your input as part of “the team,” about accommodations that will be funded and provided for your child’s education, placement, etc.

Along the way of raising Sarah, as I met many other special needs parents frustrated with schooling and IEP issues (you might remember my post about Muchlovedschool), I would occasionally hear them say something like “This would be so much easier if Clive/Portia were severely disabled/using a wheelchair like Sarah. Then the school district would give us whatever we need.” I was stunned. Negotiating with the school district over Sarah’s needs was my second job and it was intensely difficult.

We had finally bit the bullet and paid for Sarah to have her own Prentke-Romich Accent 1400 with Unity and NuEye eyegaze tracking at the end of Fourth Grade because the situation with the school district had become untenable. This device (like her power chair) cost more than our family car. Its purchase symbolized my dropping the rope on a six-year battle with the school district that began when Sarah was in pre-school and was given her first AAC device, called a Vantage Vanguard. She did well with it and loved using it with the limited hand and finger pointing she was able to accomplish. When Sarah was about to graduate from pre-school, the technology surged forward and a couple of manufacturers began offering “eye gaze” technology where you activate the cells of the device by training your eyes on them for an interval of time. Sarah’s preschool teacher, Ms. Skelly, was wonderfully pro-active and asked the MyTobii brand representative to trial the product in her class for Sarah and another child. Sarah loved using it and did well with it. I remember at that age, she was primarily playing games on the device, using her eyes to move a little guy through a house, find the bathroom, sit him on the potty, make a fart sound, (gales of laughter from Sarah).

There was agreement with the school district that Sarah would use eye gaze technology in the fall when starting her placement in the AAC kindergarten. However, when she started, the eyegaze system that was in place for her was not the MyTobii. It came from a company called Dynavox to be used with their devices. Sarah really had a hard time with the Dynavox eyegaze. It was physically uncomfortable for her, and it took us a while to understand that she was also now learning a new language completely different from what she had mastered already. Her Vantage Vanguard had presented language differently than this Dynavox Dynamo did. So it was like expecting someone to order from a menu in Greek, and also holding the menu very far away from them. She still absolutely loved Kindergarten, which shows you how much this kid wanted to succeed. But she was having a lot of difficulties learning to read, as you might guess.

At the end of her first year of Kindergarten, at the IEP meeting, the team approached us and said that they wanted to try a new approach with Sarah they called
partner-assisted scanning. They wanted to move away from “high tech” and find low tech solutions for Sarah’s problems. Basically, they came up with a plan to present information not via AAC at all but via visual choices. Do you want this (right hand)? or do you want that (left hand)? Never mind what your own thoughts are or if you aren’t interested in either choice.

Real partner-assisted auditory scanning is more sophisticated than this and involves more controls to ensure than the aide is not simply imposing her or his will on the nonverbal subject. The bugaboo of partner-assisted scanning haunted us for several years. Finally around 3rd Grade and our miserable year at Muchlovedschool we began to wisen up and toughen up and we didn’t want Sarah caught in the crossfire anymore of which communication program would be funded for her. So we trialed her talkers directly from the manufacturers and worked with her tutors and AAC specialists to choose the best possible language and platform for her success. That language was Unity, which was loaded on her Accent 1400 device and accessed with NuEye eyegaze. Of course, most important were the games loaded on there. One of Sarah’s favorites was Eye Can Fly, where she flew an airplane around with her eyes. Which makes me think once again about Angela’s final IEP meeting for her soul, held aboard an airplane. I’m honored to be included.