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Eye Gaze: The Trial(s) and Tribulations 

For two weeks this summer Sebastian had another eye gaze trial with the Tobii/Dynavox I-12. This was his third extended trial with the device and he used it once a week at school the previous year. At school they focussed on games which worked on building eye gaze skills like targeting, timing and accuracy. I asked staff to add in a program that he could use to work on communication and literacy skills, because ultimately that it what we wanted to use it for. Towards the latter part of the school year they did incorporate some of this but his skills but his access was limited to once a week so he was unable to demonstrate the consistency they required to access a similar device at his new school. My goal continued to be to acquire one for him to use between home and school so we set up a two week trial in July.

Baking with Tallula

Eating dinner: more, finished, that’s yummy, that’s yucky

Asking Daddy about his day.

During the trial we had a CDA (communications disorder assistant) work with Sebastian at home 3 times each week as well as the CWAS (communication and writing aides services) team worked with him 2 times each week. On top of this we worked with him 2-3 times throughout the day on different activities. Sometimes he told use how to build with blocks or blow bubbles or race cars. Other times he did writing activities and songs. There were also Frozen and Sesame Street videos which he could watch and there was always a ‘I need a break’ option. He had specific goals that he was working towards in order to ‘prove’ to all the ‘experts’ that he could be and was consistently successful. And he did. The CWAS team presented a request for a prescription for the I-12 for Sebastian and it was approved!

What does this mean? A prescription was needed to access government funding for a device that costs over $20,000 to purchase privately. A prescription also enables the possibility to lease the device yearly ($800+) or purchase it outright with the support of ADP (assertive devices program) funding ($5000+). This was a major achievement on all fronts. Sebastian’s first eye gaze trial was 4 years ago when he was still in nursery school. We have tried every device available in both clinics and in home trials. From the beginning I could see that he could use it successfully but in order to get the support of the team and ultimately the funding, he had to prove that he could do it. It gets pretty frustrating continually having to prove your worth, but he worked very hard and the longer he had access the the devices, the better he became at using them. After working for 4 years to get that approval, that ‘proof’ we got the prescription and the very next day we lost our access to the funding due to a lapse in our visas (and the government health care scheme).

I can talk about all of this calmly now because it’s 6 months on and everything is back on track. But for those first few months and heading into a new school, still without access to the eye gaze, the frustration and defeat I felt was sometimes overwhelming. I tried other avenues, like getting the device at school through another process called a SEA claim. His new school was very supportive and we got another trial with the device so the new staff/team could see his progress. Again, having to prove his abilities to more people. We had an additional trial with the Eye Mobile which uses the same operating system (Windows) and program (Communicator6) but on a Windows tablet with an eye gaze camera attached. The need for the two additional trials was certainly frustrating but also gave him access to a device, which we wouldn’t have had otherwise. During this time, we gained access to the funding again as our visas were renewed and we again had access to Ontario Health Care.

After now trialling two different devices we had to decide which one to get. Sebastian ultimately made that decision but we did discuss the pro’s and con’s of each. We decided on the I-12 over the Eye Mobile. Now we had to wait until the New Year to find out whether we would have access to the lease pool or if we would have to purchase it. I’m not going to go through a comparison of each device. (If you have questions, then please send me a message.)

On Thursday afternoon we got the news that we could lease the I-12 and I signed the paperwork with Sebastian on Friday morning. The paperwork for the order will be processed on Monday. As we were driving home Thursday afternoon I told Sebastian we could finally order his eye gaze. I watched happiness spread across his face in the rearview mirror. I thought I would cry for happiness in my own heart. In fact, I had to hold back the tears. I was driving. When we got home, I asked him to show his Daddy how happy he was about the news and took this photos to send him at work.

IMG_0131

We’ve come a long way baby! Watch out world. Sebastian has a lot to say; there’s no stopping him now.

 

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5 thoughts on “Eye Gaze: The Trial(s) and Tribulations ”

  1. Amazing and challenging journey to get to this point! I am aware of the opportunity you all experience, over and over, to develop patience with our slow world or culture to meet you and provide equal opportunities for Seb.

    I honor you for continuing to champion this for him, and on behalf of all living beings who have the right to communicate.

    I’m excited to hear what he had been contemplating inside that precious mind and soul!

    Like

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