By Christine Kramlich, Kyleigh’s mom
Teaching vs. Talking
“What color is this?”
“What shape is this?”
“What body part is this?”
“How old are you?”
Can’t you just hear the click of the eye rolling from the person being peppered with these questions?
Being a teacher for 14 years, I had a very hard time taking myself out of this role, even when I came home at the end of a long day. So, when my daughter, Kyleigh, got her first communication device (Springboard Lite) at the age of 3, I set out to prove to the world the genius of my child. This means, that she had to be prepared to answer all of these questions and many more.
However, using her communication device was laborious for her. She used a switch situated to the left side of her head mounted to her head array on her wheelchair to scan through the choices on her communication device. At first there were only 8 choices on the main screen, but to make her way through all 8 choices and get to the last one without getting distracted by someone walking in the door, a phone ringing, her sister calling or the dog barking was nearly impossible. Thus, she had to wait through the same 8 choices again. The frustration on her face and mine was inevitable and the tears were numerous (mine, not hers). This communication thing was NOT working.
Two years later, everyone else (not me) was ready to throw in the towel. Obviously, my daughter, for some reason, was incapable of using this communication device. But I wasn’t ready to quit on her yet. I heard about a camp at Mississippi State University called Camp Jabberjaw that was designed for communication device users. The entire family is invited to attend. While the campers are working hard learning their devices while having fun, the siblings are attending activities with campers their age and the parents are attending classes where they can learn about their child’s device and how to use it.
While we were there, we met a guy named Bac. Kyleigh thought he was hilarious and Bac thought he was pretty funny too, so they made a great match. Bac would tell jokes on his communication device (Vantage Lite) and Kyleigh would laugh uproariously. Bac taught Kyleigh that if you say “do” on your device and then “do” again, you can make your device say “do-do”. Well, when you’re 5 years old, this is comedy gold! Then, Bac taught Kyleigh that she didn’t have to go stand in the long line for food if she could tell her mom what she wanted on her device. And moreover, if she stayed there at the table with Bac while mom waited in line, she could learn more things about her device like how to tell her own jokes and how to sass her mom by saying things like “make me”.
Fast forward two years and Kyleigh (age 7) was using her communication device (Vanguard) semi-effectively. At least well enough to communicate her wants, her needs and her thoughts. I called it “yoda-speak” but she got her point across. She would say short phrases like “go outside” or “foot hurt” or “want go”. She could add things to our grocery list and participate in some basic school activities and she certainly could use her more refined sense of humor. She could write a “sentence” if forced to, but it didn’t come natural for her.
Middle school came, and with it the technological advances of eye gaze (Accent 1000 with NuEye). So switches for accessing her device became a thing of the past. With this, Kyleigh became much quicker with her device and ultimately a more effective communicator. She started presenting at conferences, texting friends and really letting her personality shine through. Now that she had learned the power of true communication, she didn’t mind doing her school work on her device, including some amazing artwork, power point presentations and much more!
Which brings us back to Camp Jabberjaw again where things came full circle this year. Kyleigh asked to go back to camp, not as a camper, but as a counselor. She wanted to do for someone else what Bac had done for her. Luckily, the directors remembered Kyleigh fondly and said they would love to have her back. She had the opportunity to impact the lives of many young people going to camp for their first or second time….campers who are just beginning their own communication journey. I feel so blessed to be Kyleigh’s mom. She has such a heart for others and genuinely wants to see people do well. I am sure that one day, Kyleigh will be part of someone else’s story and I can’t wait to hear it. This isn’t the end of Kyleigh’s story either and I’m sure it’s only the beginning of many more stories that have yet to be written.
“You have to LEARN TO TALK before you can TALK TO LEARN”—Gail Van Tatenhove, SLP
Stories and Strategies fo...