Originally published in Patch October 19, 2022
Examining The Letterboard
Nonspeaking People with Apraxia can now Communicate with the World
By David Block
No doubt, there’s a wide gauntlet of disabilities including blindness, deafness, mental illness, paralysis, etc. Fortunately, one benefit people with these and other disabilities have is that they can tell people what they need, how they feel and what is bothering them. Whether or not they can communicate this by speaking, using sign language, they express their needs. Unfortunately, numerous persons with Apraxia don’t have this luxury.
What is it like to have Apraxia?
Imagine that your relatives, teachers, and neighbors believe you are downright stupid, yet you know you are smart, but are unable to prove this to them. Imagine growing up knowing – unequivocally – you are highly intelligent, but your teachers insist on teaching you the ABCs year after year after year. These are typical challenges that people with Apraxia face every day. Elizabeth Vosseller of Herndon, Va., Executive Director of the International Association for Spelling as Communications (I-ASC) who works with individuals with Apraxia defines it as a breakdown between planning and execution of the motor action.
“They have the idea, the planning, but they can’t make their bodies carry out what they want to do,” said Vosseller. But these individuals are now able to do these things and communicate with the world because they can now use the letterboard.The letterboard is a 22 cm x 28 cm (9-inch x 11 inch) laminated piece of stiff paper with the entire alphabet. The letterboard user/speller works with a Communication Regulation Partner (CRP).
Kari Nyland of Seattle, Wash. Explained how she operates as a CRP when her 19-year-old son Joel needs to use the letterboard.
“I hold the board so that the speller can hold their pointing finger in a right angle from their elbow and so they can use their whole arm to point to letters,” said Kari Nyland. “The idea is to make communication a gross motor activity instead of the fine motor activity it is when we speak. As a CRP I also have to be aware of environmental distractions like sights, sounds, smells, temperature that may influence the speller.”
Certain letterboard users shared with this writer via email with the help of their CRPs how using this device greatly improved their lives.
Sarah Ackerman, 25, of Wallingford, Pa. said that using the letterboard five years ago, it made her feel free for the first time ever.
“I was taught to read in kindergarten,” said Ackerman. “I learned basic math in the first grade. Every year after that, I was taught the same things over and over again. I was so frustrated and humiliated by the experience. I thought I would never escape. I needed to be a part of life as it should be for everyone.”
She can now share her thoughts, knowledge, and feelings with her loved ones and those who support her. She added:
“I am able to give input into decisions that affect me daily like selecting activities and making plans for the future. I can voice my ideas and opinions. I can have a conversation and communicate clearly on a letterboard.”
Noah Seback, 23, of Roswell Ga. has used the letterboard for seven years.
“Before using the letterboard, I had what I consider a non-life,” said Seback. “I was alive, but not really living. My existence was directed completely at the discretion of other people, under a false premise, and under false assumptions. I had no way to give input. So now being able to communicate about and give input into every aspect of my life, including debunking those myths and fallacies, was truly like a new birth. Every single aspect of my life has improved: communication, relationships, emotional and mental wellbeing, education, opportunities, life trajectory, self-determination, treatment by others. I could go on.”
Seback elaborated:
“My very identity was trapped within me. The ‘experts’ said one thing and the way my body presented reinforced this. Inside of me was the truth, yet I had no way to reveal it. Instead, they determined me to be intellectually disabled, and I was treated as such. This was demeaning, infuriating, depressing and traumatizing because I am not. So almost every assumption and impression about me was false. For sixteen years I served a life sentence which felt like a death sentence.”
Professionals, educators, and parents were also frustrated.
I-ASC Practitioner Leadership Cadre member, Monica van Schaik of Kitchener, Ontario, Canada, who is also the coordinator of I-ASC’s Spellers and Allies Advocacy Network remembered:
“Before this, I was doing tutoring with neurodivergent children, a lot of my tutoring clients were nonspeaking,” said van Schaik.
They were led to believe that their students had intellectual disabilities.
“I spent many months teaching them the same words, teaching them to read the same sentences over and over not realizing that it was a brain – body disconnect – it was not an intellectual challenge,” said van Schaik. “So when I discovered I-ASC, and learned that I was totally boring my clients and probably creating a lot of frustration, that was a big shift for me.”
Vosseller said that prior to teaching her nonspeaking clients how to use the letterboard, she knew that many of them were intelligent, but she had no idea how to let the world know that. She based her instincts on her clients’ reactions to things she said. She knew that if they had been intellectually challenged, they would not have laughed or frowned after hearing her make specific remarks.
”Their intelligence was trapped inside of them,” said Vosseller. “This population has been marginalized. Peoples’ attitudes toward them was ‘keep them safe,’ yet these people were not being educated.”
According to Vosseller, an estimated 5 thousand to six thousand nonspeakers use some form of spelling or typing as some form of communication globally.
“Maybe 4,500 use it in the U.S.,” said Vosseller.
And Now
Currently, letterboard users are now reaching out to nonspeaking individuals with Apraxia in order to help them communicate with society because they know firsthand the pain of being isolated and discarded. The painful realization hit home with many of them AFTER they were set free. For more information about the letterboard, log onto www.I-asc.org