All posts by Teresa

Patty Listens to Radio with String Switch

Patty accesses and controls a battery-adapted radio with a Linkswitch timer and a AbleNet string switch. This video demonstrates Patty’s ability to use the movement of her right leg and foot to control a string switch which is connected to a latch timer which is connected to a battery-adapted radio.

Patty Works with String-Switch for the First Time

Patty's right foot with string switch Patty's right foot with AbleNet string switch

5/30/10

Today we introduced Patty to a string-switch (AbleNet) for the first time. For several months we have been exploring switch access with several different types of switches including microswitches, mercury switches, miniswitches, and any switch we could think of that might give Patty access to controlling some cause-and-effect activity. It seems like a simple enough task but with Patty there are so many varibles that can make a difference a sixteenth of an inch one way or another. These things take time.

Well, today was a very big day. We’ve been borrowing switches generously loaned from the Frank D. Lanterman Regional Center’s Family Resource Center and today we tried a string-switch for the first time. It’s so simple I’m now wondering why I didn’t think of it earlier but that’s how these things go. We simply hung the string loop over of Patty’s right foot and toes, mounted the switch an inch or two from her foot and Patty did the rest!

With Patty’s determination and our verbal direction and support, Patty was successfully able to turn on and off a couple battery-adapted devices: one, an insane toy from Chinatown; and the other a radio tuned to a local classical radio station. Take a look at the video to see and hear some wonderful music, literally and most definitely figuratively.

At the end of this video you will also have a chance to see how Patty communicates with an eye-gaze system that she has developed with Teresa. Enjoy!

— Marty

 

You’ve Got A Friend…

Teresa and Patty

With Patty there’s always so much to say that it can often be a challenge just knowing where to start. And Patty’s story could never be told without including mention of Teresa—Patty’s good friend and extraordinary advocate.

As someone more comfortable in the background, Teresa’s commitment, care and dedication to Patty is all the more remarkable given some of the seemingly insurmountable barriers and resistance along the way. The separate roles of being a friend and being an advocate are related yet often not the same.

Team Patty!

Patty with-Chin Switch

This week was another week to remember! Teresa recently introduced a chin switch as an option to give Patty switch access that will allow her to control battery-adapted devices (think radio, lights, fan, etc.) and could well provide a tool that will lead to enhancing Patty’s ability to communicate.

Chin-Switch-011 Patty-with-Chin-Switch-01

To support such a strategy, TEAM PATTY was launched as a summer project to provide Patty ample opportunities to practice her switch access skills. Patty’s younger sister Katty is leading TEAM PATTY with support from Teresa and yours truly. And now that she just graduated from high school, Patty will be a paid team member as her own summer intern! We’ll be sure to keep you posted.

The Reading Sisters!

Patty's Reading Stack

Teresa always has a trick—in this case a book—up her sleeve. Teresa is now working with Patty’s younger sister, Katty, on a reading project that is keeping both sisters busy. Katty reads to Patty on a regular basis and together they have knocked off an impressive list of books. Got a good summer read to recommend? Let us know and we’ll be sure to share it with the Reading Sisters.

Patty Tries A Chin Switch

Patty recently began a trial with a chin switch to see whether she can comfortably and effectively access the switch to control a battery-adapted device such as a radio, fan, or light. Teresa purchased the switch from Enabling Devices and Patty has already demonstrated an ability to access the switch. Tweaking some of the position variables is the next step and with practice Patty will hopefully soon be able to voluntarily access and fully control the switch.

Chin-Switch-03

Chin-Switch-01

 

Communication with a Letter Board

Dad-Catch-Katty-02

Teresa’s been working with a marker board to help facilitate Patty’s communication. Teresa voices the alphabet—letter by letter—and Patty spells the message.In this conversation, Patty is telling Teresa about her sister Katty and how she was caught by her father after sneaking out without permission. Here’s Teresa’s description:

“It’s actually a very funny conversation. Apparently, Katty snuck out and was caught by (her father)—I think she was riding around with her friends. If you look at the board you’ll see that Patty spelled DAD: DED, but that was my error not going slowly enough when I said the vowels A–E–I–O–U and Y. Patty confirmed most letters using the YES switch with the new spandex loop—that worked beautifully, I never had to adjust the switch once it was placed in the correct position.”

Write On!

Finding Emilie

Emilie's art

And if you like inspiring stories about loss and recovery, here’s a beauty from RadioLab:

In this segment, we take an emotional left turn to a story of a very different kind of lost and found. We begin with a college student, Alan Lundgard, who fell in love with a fellow art student, Emilie Gossiaux. Emilie’s mom, Susan Gossiaux, describes her daughter, and the terrible phone call she recieved from Alan nine months after he became Emilie’s boyfriend. Together, Susan and Alan tell Jad and Robert about the devastating fork in the road that left Emilie lost in a netherworld, and how Alan found her again.

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Finding Emilie

For more on Emilie:
Emilie Gossiaux’s web site

Tweak, Tweak, Tweak

String-Switch-Adaptation

A lot has been happening (or not happening) in Patty’s world depending upon one’s point of view. This photo was taken today by Teresa B. and it shows a “tweak” Teresa fashioned to help stabalize the switch Patty uses with her feet. As mentioned elsewhere on this blog, a switch strategy is part of Patty’s overall communication rehabilitation. I don’t think I’ve ever used that term—communication rehabilitation—but it seems to fit. When Patty activates the switch with her foot it communicates sooooooo much.

First, the switch is evidence of Patty’s receptive language—her ability to hear, understand and respond to her environment. By accessing and activating the single-switch in a conversation, Patty is pretty much telling us that she’s in the room and certainly part of the conversation. Teresa B. has been Patty’s friend, advocate and guide throughout  this long communication journey. The photo is just another tweak up Teresa B.’s long sleeve. Talk about creative arts.

So that’s the latest good news. The rest pivots upon who understands and believes in Patty’s recovery. Initially, recognizing the magnitude of Patty’s efforts may not be immediately apparent. It takes time, is often subtle, and sometimes may even require a bit of faith. It’s certainly not obvious in a brief medical examination or consultation when time is driving everything—including quality of life issues. And yet, the time it may take hardly diminishes the reality and significance of Patty’s efforts and achievements.

Recently, the videos on this blog, recording Patty’s effort and progress, were characterized as a “trick” and not to be believed. The injustice and unfairness of such a statement is tragic and I’m still trying to figure out how to digest that one. Patty certainly deserves more, far more.

—MS