We have been gazing and gazing and gazing!
Not really. But Christian has!
Let me back up and revisit his big evaluation coming up at the end of January. Christian will be evaluated by a team for the perfect communication device for him. In the mean time, we're dipping his toes into the warm waters of eye gaze talkers. This means we set up three different consults with three different eye gaze device companies to see which would be best for Christian before the evaluation so we have more information going in.
And, just really quick, the eye gaze talker is a communication and learning device that functions off of reading the glint of the eye. Basically, where ever Christian looks on the screen, something will happen. However, he has to learn how to keep his gaze on a picture to activate it and, eventually, learn to look at pictures to communicate and essentially "talk."
We had our first appointment last week with the Tobi company. They came to our house and brought all of the equipment. It was very impressive but I didn't know what to expect in the first place. The rep brought a rolling mount so that we could get the optimal position for Christian to functionally use his vision and without much difficulty. Positioning is EVERYTHING. She was able to assess where Christian was using his vision and adjust the equipment accordingly.
Of course, my biggest fear would be that Christian didn't participate at all. That was only a fear, though, as I knew he would be able to do at least something and he absolutely delivered. Once we got his gaze calibrated, we quickly learned Christian would need larger pictures and a shorter reaction time. Meaning he couldn't be required by the computer to gaze for a long time to activate a picture.
We adjusted and readjusted and then found a program with four large squares. In each square was a musical instrument. We asked him if he could find the drum and make it make a sound. And then he did. Then we asked him to activate the guitar like Big Brother plays and then he did. His OT who has known him the longest cried a little bit. Because she's awesome. (Sorry I outed you, Kim!)
Today we met with another company called PRC. She requested that we meet at his school in his classroom. I was a little nervous about this because there is so much distraction in his class. But I guess he would eventually need to learn how to use the device despite the distractions so it was fine that we did the consult at school today.
Christian had an audience, too - his vision specialist, his teacher, his speech therapist, and his PT came to watch. No pressure, Christian! So, of course, the first twenty minutes or so he was pulled to the right and refused to participate. They also didn't have a rolling mount so Christian had to be adjusted to the device rather than the other way around, which was a lot more difficult.
I finally asked if I could hold him on my lap to see if he would start to participate. And it worked! Stubborn boy! As soon as I had him in my lap and not fighting his ATNR and extension, he not only started to look at the device, he activated it, and held his head up the entire time! The device was even able to be programed so that everywhere he looked, the squares would light up in red. It was constant feedback and encouraged him to keep exploring. He did great!!!
We have one more consult to go with Dynavox, but that's not until mid January. I liked elements of both systems, but the Tobi system did seem newer and larger. I also thought the rep from Tobi did a better job of conforming things to Christian rather than trying to conform Christian to the device. Big points for the Tobi rep! Also, the Tobi rep mentioned that there is a new system coming out that will calibrate the eyes no matter where Christian is looking on the screen. So he won't have to hold his gaze in a small space for a long time, which is very challenging for him.
This is all very exciting, but Christian is ready! He needs tools to communicate, whether it's switches, buttons, or a computer screen.
I'm taking the whole eye gaze talker in stride. It always feels like I have to prove that he is so smart and that he has wants and he has a voice. So a device like this makes it easier. When he activates it, it shows everyone what I already know. That he counts. That he matters. And that he may just have more to say.
March for Science
6 hours ago