Can you hear me now?

March 7, 2010

Amidst all of the other craziness we’ve been going through lately there have been some bright points. One of which has been Nathan’s ever growing interest in communicating. With the oral motor part of his brain being some of the most effected with PMG, his current, most successful, means of communicating is via coos, sighs or little babbles to get your attention. Then he’ll look at something, occasionally pointing or throwing his head in the direction of something he wants. His second most effective way of getting what he wants is flashing his million-dollar smile, and suckering everyone to do/bring everything for him or to him.

This past Tuesday, while at physical therapy, he practiced both his walking and communicating. He did do a pretty good job of starting to take steps on his own on the treadmill (we’re practicing for another intensive CP study to start later in March.) Later, he would move around the gym in his walker. Since we weren’t staying one place, we didn’t mind when another kiddo wanted to work in the area where our stuff was. I grabbed our coats and moved them down towards the waiting room to be out of everyone’s way. Nathan saw me do it and if he sees coats, it’s time to go outside.

He went from the center of the gym all the way to the end and when asked where he was going now, he just stood there in a dead stare at the coats. Being close enough to the end of the session, Abbi asked me if I had an objection with walking out to the car and just end the session when we got out there. I agreed and we tried to tell Nathan what the plan was. I had to hold the door so that Nathan and Abbi trailing could make it out to the lobby and then out to the main door. Nathan was very reluctant as I did not yet have the coats in-hand, and he was not going to be tricked. Once through the main door, I grabbed the coats and exited the gym. When Nathan, who was looking over his shoulder the whole time waiting for me to reappear, saw me with the coats, and he was off again, through the lobby, out the door and all the way across the parking lot to our car.

On Wednesday, we met with a vendor for an augmentative communication device, during our speech therapy session. We have been practicing working with eye gaze lately, with choices on sheets of paper and making him focus on one to get a particular toy, book, etc. We knew we’d be trying out the eye gaze part of the machine, but with Nathan everything is variable and subject to his interest. We also knew that if he has his own screen to look at, his interest level rises as well. The following video shows how he took to the new machine.

All of the clips in the movie are as much video as I had. (It’s almost like I was trying to pay attention to the rest of the demonstration.) We think this machine shows great promise for him but there are some things we have to work through to make it work.

First, is the matter of acquiring it. I’ve joked with others that the adaptive bike Nathan was using so well in intensive therapy cost more than my first car. (Quotes on the bike are in the $4,000-4,200 range.) Well, for the device shown in the video, plus the eye gaze accessory, it will cost more than my first new car (the quote we just got rang in at over $15,000.) How can anything running Windows XP cost that much? For 15K it should at least have an Apple on the side of it!

Second, the practicality of it. In Annette and my mind, we still see Nathan walking (with a device/walker of some sort) in his lifetime. How would this work with something like that? (I envision the credits to the Flintstones when they set the rack of brontosaurus ribs on his car window.)

Third, always having someone there who knows how to use it and can introduce new icons/choices into it so that he’s not just doing/choosing the things he currently does/knows keeping him from learning and expanding.

We’re going to continue to work with the machine at speech and possibly demo a model at home in a few weeks. There’s also the possibility of getting one to use at school, but we’re not sure if any one would be able to demo the eye gaze part (50% of the total cost.) Otherwise it would be used as a touch screen or adapt buttons to it, which Nathan hasn’t been as successful with to date.

Any way we look at it, the thought of him communicating is still a real possibility. This is very exciting and encouraging for us. It’s amazing how technology opens so many doors to people these days. Who knows, if Apple ever gets on board, soon there may be ‘an app for that’ too.

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