Find Your Voice

Throughout the day, I have been having this feeling that I need to write a story about the work that I do. Turns out, what I need to write about has nothing to do with me. Let me explain.

I am an Assistive Technology Strategist for a school system in Louisiana. It is a very interesting and rewarding job. Essentially, it is my job to help kids that are having trouble interacting with the curriculum. Through the use of technology, low tech or high tech, I help them complete tasks that they would otherwise be unable to. It is a problem solving job.

I am attending the Assistive Technology Industry Association (ATIA) conference in Orlando, Florida and had the honor of meeting Lexi Haas. Her and her mother presented at the conference to promote her book, The Year of the Buttered Cat.

“The dual timeline story follows Lexi through the final 24 hours before her second brain surgery, and flashes back to the Year of the Buttered Cat–the year she uncovered what happened to her to leave her with an unmanageable body and without a voice.”

"In 2009, in an attempt to help manage her severe movement disorder, Lexi became the first person ever with kernicterus to have a procedure called Deep Brain Stimulation (DBS)." My brother, who had Parkinson’s disease underwent this same surgery to help control his tremors. Like Lexi, he was awake during the surgery. In Lexi's situation, she did not have language to be able to communicate with the surgeons while they operated.

My brother was required to do various tasks during the operation, like smile and move his eyebrows. I'm not sure if Lexi was required to do the same but I imagine she was since they are trying to target very specific parts of the brain with a probe.

Lexi was born with kernicterus, which according to the National Organization of Rare Diseases “…is a rare neurological disorder characterized by excessive levels of bilirubin in the blood (hyperbilirubinemia) during infancy.”

Basically, this left Lexi trapped in a body that she couldn’t control. Fortunately for Lexi, she has parents that believe in her. Somehow they knew that within, Lexi was a brilliant little girl and they set out on a journey to help her find a way out, a way to communicate, a way to show the world who she is.

As an Assistive Technology Strategist, I have come across students who are unable to control the movements of their bodies and are non-verbal. These are the students that keep you up at night knowing that if you don’t find a way to help them communicate they will remain trapped.

The process of finding the proper Augmentative and Alternative Communication (AAC) solution often comes down to finding a way for the student to access the technology. Eye gaze is sometimes an option, as is wearable switches and scanning options. Success is measured in tiny increments and many often give up.

I can tell you, success doesn’t happen without the loving support of a caregiver or family member and the tenacity and determination of the person themselves. The fact that Lexi and her mom, Susan Haas, have written a book, albeit it took five years to complete, is a testament to the love and commitment they share. I am in awe of them and I think you should be too.

I have not read the book yet, but I can tell you that after meeting this extraordinary young woman and her parents, I can’t wait to read it. Matter of fact, I ordered it before the talk was even over.

Do check them out: http://lexihaas.org/