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Kyra Lovings

"Are You Talking to Me?"

A Clinician's Perspective by Brandi-Lynn Greig

Last summer, Kyra Lovings, an 11 year old girl with a medical diagnosis of cerebral palsy, was talking to me. She was not just talking to me, but to other adults and peers.

Kyra is essentially non-verbal due to the severe muscle weakness that results from the Cerebral Palsy. She received a Vanguard Plus almost five years ago and until the past year has struggled to physically access it. In the past months, Kyra has been learning to use auditory scanning with a single switch located at her left temple to access her Vanguard.

"It is amazing what an intensive week of opportunities can do for a child like Kyra." Brandi-Lynn Greig

Kyra is a cute young girl who is full of smiles, facial expressions, and the ability to verbalize 'yeah.' She is far from quiet, but actually talking to her friends and family has always been a significant struggle for Kyra. It is amazing what an intensive week of opportunities can do for a child like Kyra. She is definitely talking to me now!

Kyra had an opportunity to attend "Talking with Technology Camp" in July of 2009. Talking With Technology (TWT) Camp is a week long program developed by The Children's Hospital of Denver for young people ages 6 to 21 who use augmentative and alternative communication (AAC) systems. The Children's Hospital contracts with the Colorado Easter Seal Society for this week to be held each summer at its camp facility, Rocky Mountain Village in Empire, Colorado. The theme for last year's camp was "Are You Talking to Me?," which was truly fitting for Kyra as she had such limited expression prior to camp.

Clinical Information

Before Camp

Looking at the LAM data that was collected for months prior to camp, throughout camp, and for a month afterward a number of significant changes were noted in Kyra's expressions. Prior to camp, Kyra was communicating 90% of the time using "pages." This means she was using fringe vocabulary to answer specific questions. For example, she was able to express things like "zebra" or complete phrases such as "what are the snack choices?"

A sample expression from Kyra one month before camp was as follows:

• 10:09:57 PAG "What are the snack choices?"
• 10:14:24 PAG "What are the snack choices?"
• 10:14:47 PAG "I don't want to eat."
• 10:15:38 PAG "I want something to drink, please."
• 10:17:10 PAG "What is your favorite snack?"
• 10:17:12 PAG "What is your favorite snack?"

In these 18 minutes of conversation, Kyra was able to use her preprogrammed phrases to communicate six thoughts about one specific topic.

During Camp

A sample expression from Kyra during camp was as follows:

• 11:33:29 SEM "Play"
• 11:33:35 SEM "you"
• 11:34:44 ACT "I win"
• 11:34:49 SEM "play"
• 11:36:12 ACT "bad"
• 11:37:14 SEM "More"
• 11:37:41 SEM "play"

In these four minutes of conversation, Kyra was able to use single words to four unique thoughts, "play you," "I win," "play bad," and "more play." She used single words to express her own thoughts and communicate in an effective way. She was also able to express herself quickly, communicating more thoughts in a shorter period of time.

After Camp

A sample expression from Kyra after camp was as follows:

• 10:19:43 SEM "don't"
• 10:21:17 SEM "please"
• 10:22:51 SEM "color"
• 10:23:13 ACT "green"
• 10:26:10 SEM "want"
• 10:26:25 SEM "like"
• 10:27:22 ACT "swimming"

In these eight minutes of conversation, Kyra was able to use single words to express four unique thoughts, "don't," "please," "color green," "want like swimming." This was communicated over three weeks after camp, showing that Kyra has been able to continue using her single words and express herself effectively.

Kyra wrote a letter home from camp using a 'fill-in the blank' format. This is the first letter Kyra has ever written, but I don't think it will be her last. Her family can now say, "Yes, Kyra is talking to me!"

Auditory Scanning

Kyra activates her headswitch to make her Vanguard Plus start to scan. Auditory scanning is turned on so that she hears the name of each row as it scans down the page. When she hears the name of the desired row, she hits her switch, and the device scans horizontally across the row, naming each key as it scans, and Kyra then hits her switch to select the desired word. Auditory scanning allows Kyra to use the auditory cue as a supplement to watching the scanning on the display. Kyra has selected a child's voice as her speaking voice in the Vanguard, and the auditory scanning voice is a male voice, so it is easy for the listener to distinguish between what is an auditory prompt and what Kyra is saying. Note that each word requires three switch hits: One to start the scan, a second one to select the row, and a third one to select the specific key within the row.

A Parent's Perspective

Kyra had a great time at camp. She worked hard - very hard from my understanding. She had fun with the typical camp activities too but from what I can tell with her, the talker activities were a big part of the experience for her. I know she did more at camp with her talker than she had ever done with it - that's really exciting for us.

I haven't seen a formal report yet but the informal information we received at checkout had some great recommendations for her - new things that we can try. There was one thing specifically with her equipment that I can think of off the top of my head that was a real a-ha moment for me. Sometimes when you are working everyday with someone or if you aren't constantly exposed to new ideas or even just different ways of doing things, things can fall through the cracks. Having fresh eyes is invaluable. We are excited to take what Kyra got from camp and use it in our everyday life.

One of the biggest indicators to me that camp went well for Kyra is that she is interested in going back next year. Even though I know she had to work hard (and she did), she says she wants to do it again. It wasn't an immediate yes so I know she was thinking about the hard work. I personally think that's good and it shows that the camp was a challenge for her. But ultimately, she was all for going back again.

Camp has been an excellent opportunity for her and I know that we will build off of the skills that she gained.

Kyra's Mother,

Kimberly Lovings

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