I sat in a corner of my son’s classroom with a knot growing in my stomach. I’ve been through this before.
I was there with the speech-language pathologist, an OT who specializes in communication systems and two of Deane’s educational assistants. The purpose of the meeting was to show the EAs how to connect Deane’s Vantage – his voice output device – to the computer so that he could use the Vantage to write and print. This was the whole reason we switched from the iPad, forcing Deane to learn a second new device in two years.
The technical process was straight forward enough. But the EAs were wondering when Deane would use this. What would he need to print out? He had used it to do basic “journal” writing that largely focused on what he wanted to do when he could get off the computer. What about telling his classmates what he did at home? That vocabulary isn’t in his Vantage. Another person, a communicative disorder assistant, was going to come out and talk about what he needed.
The knot tightened.
There was an adapted joystick on the table with Deane’s name on it. No one seemed to know if he knew how to use it. It was supposed to double as training for driving a power chair.
The OT also wanted to demonstrate how Deane could browse the web. A page in the Vantage with arrows and an enter key would replace the mouse. But the arrows needed to be pressed repetitively to get anywhere.
The joystick worked better . However, its enter button worked everywhere but on the Google search page. He could use the joystick and then switch over to the Vantage on the Google page and then switch back.
The knot was beginning to make me feel nauseated
We also started talking about Deane;s “low tech” communication – PCS symbols – on his tray. It needs to be updated with pictures of his classmates and staff and school activities. Could I email them the file? Would it work on their updated software? Did they still have the older version?
As I left, the knot turned into a low-level frustration. I am thrilled that everyone was focusing on Deane’s communication. It wasn’t being left until October when they had his education plan worked out. The amount of human resources dedicated to it that morning was impressive. Why was I not happy?
With so many topics under discussion, glitches in various processes and people dashing off to check information and availability, I was left feeling that there was no clear path, no concrete plan of action. What was missing was input from the most important person: Deane.
It was about Deane, but did not involve Deane. We didn’t know what he wants, how he would like to communicate or how well can he use these devices and what is he capable of. Sometimes we get so focused on the technologies and technicalities that we loose sight of the person in the middle.