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What he’s trying to say – Part 3

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.

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Discussion

7 thoughts on “What he’s trying to say – Part 3

  1. Hi Ijeoma — Did you wish that Deane was at the meeting? Are there just too many pieces to the puzzle and everything is cumbersome? I know what these meetings feel like, and it’s hard not to feel that nothing practical is going to come from them. I just wondered if there was something that could have made it better.

    Posted by Louise at BLOOM | October 1, 2012, 9:58 am
    • I’m not certain if Deane being at the meeting would have been better. Part of the problem is that all of these people are new to working with Deane. They don’t know what he can and can’t, will or won’t do. I think what we needed was some logic to the process. Perhaps starting with the communicative disorders associate coming in a programming the vocabulary that Deane needs to talk in the group discussions about what he did at home and what they are doing that day. Also change his tray display. Then let’s talk about Deane printing out his message. It is great that the communication team is being so pro-active but I think some of their information may have been lost on the EAs because they couldn’t readily see how to apply it.

      Posted by disabledfamilies | October 1, 2012, 11:14 am
  2. As usual, the cart was set before the horse. Deane should have been assessed first and then seen how he could use this device and system. It may not be doable even if it is the most wonderful thing in the world. Each child needs to be assessed and a determination has to be made what that child can use to communicate. Once the specialists could see how Dean operates, they could then work with device and see how and even if the system is relevant to him and/or other children in the school. It is entirely possible that this isn’t a good system or even a workable system for Deane. Without seeing how Deane operates (One), then for those teacher to get fully trained on that system(2), how can the pieces come together. They were at step three withoug doing one and two.

    Posted by Cath Young | October 1, 2012, 1:36 pm
  3. Honestly, the whole AT/AAC thing for my daughter has driven me slowly more insane over the years. I can’t let it go, don’t want to let it go, but it’s just so damn hard.

    Posted by Elizabeth | October 2, 2012, 1:58 am
    • As someone who is considered “able” in every way by most every measure, I can tell you that I would have trouble learning to use some of these systems and to have to switch so many times is more than I would be able to manage well. I find all of this appalling.

      Posted by Cath Young | October 4, 2012, 8:27 am
      • Many times I have wondered how parents who weren’t computer/technologically comfortable manage. It is a blessing that all this stuff exists to help Deane, but at times it is also overwhelming.

        Posted by disabledfamilies | October 4, 2012, 2:14 pm
    • The number of times I have threatened to drop kick Deane’s VOCA because it is not working … You want to do it for your child, but wonder why it has to be so difficult.

      Posted by disabledfamilies | October 4, 2012, 2:16 pm

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