Since the summer of 1985, John Sullivan of rural Marlette, MI has been on a rare and rugged journey. And now, for the first time in all those years, he can communicate—really communicate—with companions who make sure he has the TLC he needs each day. John could always blink once for “yes” or look a certain way at someone in his family and they instinctively knew, or could usually piece together, the essence of what he was trying to say. Recently, John is learning that he also can rely on the movement of eyes to say things more fully, freely and clearly through his new Tobii Dynavox I-12 augmentative and alternative communication (AAC) device. He uses it to announce “The bird is here” on mornings when a favorite cardinal sits at the window, to let others know that he’s a huge “Star Wars” fan, or make practical requests for food or a bath. A humorous breakthrough moment occurred during a training activity as he learned to use the device. John’s speech therapist when she asked which holiday is nearest his November birthday. She thought for sure Thanksgiving was the answer. Turning to seasonal language content she programmed into the device, John blurted out “Halloween”—the correct holiday.

It’s obvious that John is enjoying the change that the technology brings to his life.  “He’s almost a new person,” said Dick Sullivan, John’s father and primary caregiver. “It’s a new chapter.”

John is 48 and the oldest of four siblings. John lives with his dad, mother Marcia and brother, Ryan. Dick Sullivan appreciates the independence factor the technology offers. “I just think it’s nice that he can have a conversation with someone other than me.”

Kirsten Billeter said, “Conversationally, it’s just nice to say hi and bye” to her brother, adding that it is probably overwhelming in a way for him to have a voice again.

“As hard as it’s been for us for these past 30 years, imagine how hard it’s been for John.”

John-foodJohn’s speech loss and need for constant care go back to an early morning thunderstorm one summer three decades ago. While playing in a high school golf tournament on Michigan State University’s Forest Akers golf course, John and his three partners were struck by lightning. All of the young men experienced brief unconsciousness and injuries. Three recovered. John sustained nerve and brain damage resulting in permanent and profound physical disabilities. He has traveled throughout Michigan, to Florida and even to Minnesota’s Mayo Clinic for various therapies and treatments.

At the time of his accident, John had so much to look forward to. Awaiting his senior year at Marlette High School, he had just been re-elected class president and planned to study engineering in college.  Everybody liked John.

“He was one of the nicest people in our class from the time we were starting kindergarten,” said Tammy Wendt, one of the organizers of the second Sullivan Scramble benefit golf outing to be held Saturday, July 9 at Forest Akers to help John and his family pay for expenses. “He really deserves everything we can give him.” The Sullivans bought a wheelchair-accessible van with proceeds from last year’s outing.  One week after this year’s event, John plans to attend his 30th high school reunion. He looks forward to back-to-back opportunities to thank friends for their support with the help of his new voice.

John’s situation is very unusual. The odds of being struck by lightning in the United States during a given year, by some estimates, range from one in 500,000 to almost one in 2 million. A National Weather Service Report on the National Oceanic and Atmospheric Administration website says there are one in 12,000 chances that a person will be struck by lightning over a life span of 80 years. Varying degrees of injury and disability may result when it happens. Struck By Lightning, an organization that tracks lightning-related injuries, notes that 17 have been reported in 2016 so far. From 2010 to 2015, less than 40 such injuries were reported in Michigan, where John lives. A number of lightning-related injuries go unreported.

Perhaps most striking about John’s story is the uncommon love that surrounds him and the special bond he shares with his father. Dick Sullivan decided to sell the family dairy farm knowing that taking care of his son would be a full-time job. On an average day, he handles a lot—transferring John to and from his wheelchair, maintaining his feeding tube, sometimes feeding John a bit of steak and potatoes by mouth. Father and son spend a lot of time just enjoying each other’s company. The Saginaw Catholic Diocese magazine profiled their relationship in an article published last year to coincide with the 30th anniversary of John’s accident.

Around that time, family members and friends were still pondering the possibility of a speech-generating device as a way for John to participate more actively in life though little success had come of his prior AAC evaluations. Then John met with speech-language pathologist Pamela Rick of Residential Home Health in the Detroit metropolitan area. She felt a unique connection because they’re the same age and she wanted nothing more than to help him. At first, Mrs. Rick said, she doubted that an appropriate solution for John existed because of his limited head control and inability to move other parts of his body. Little by little, however, John’s alertness, kindly smile and determination to make the most of what he had outshined the negatives. Mrs. Rick began to see him as a strong candidate for an eye-accessed AAC device. “John watched every single thing I did very intently. He wasn’t just staring off. His eyes showed a lot of purpose.” Her recommendation of the I-12 yielded real benefits, she said. “For the first time, he is able to make simple choices for himself, greet people and ask simple questions. The possibilities are endless for him.”

Kylie and Kevin Billeter see it, too. The 13-year-old twins, John’s niece and nephew, always ask if John will bring his device when he comes to visit.

“It’s a huge improvement over blinking once or twice,” Kevin said. He likes to engage John in conversations about current TV shows and when John calls to Dick Sullivan from another room.

Kylie says the I-12 “opens up his vocabulary so much more” and created language content for her uncle to use.

“It feels good being able to help him with something important.”

For more information on the Sullivan Scramble, visit www.sullivanscramble.org

Sources:
Struck by Lightning http://www.struckbylightning.org
Center for Disease Control and Prevention http://emergency.cdc.gov/disasters/lightning/victimdata.asp
National Oceanic and Atmospheric Administration http://www.lightningsafety.noaa.gov/odds.shtml

I recently had a conversation with a man who had a stroke about two years ago.  He is able to use his speech to communicate but does experience some difficulty with memory and word finding.  He has always been an independent person and one of the ways he has maintained his independence since his stroke is to give his communication partners directions when he wants to remember or find the right word on his own.  Instead of waiting for his communication partner to finish his thought, he says, “Now wait a minute” and holds up one finger.  This prompt to his communication partner generally gives him enough time to recall what he wanted to say or find the necessary words in the sentence.  It allows him to be independent—something he wants very much.

This kind of strategy would work in an augmentative communication system too.  Messages such as

  • “Please wait.”
  • “Don’t interrupt.”
  • “I’m still thinking.”
  • “I can remember, just give me a minute.”
  • “Hold on, I’ve got it.”

could be programmed in and used when a thought or word isn’t immediately spoken and the speaker would like a minute to two to remember or find them.  Accompanying gestures could be taught in conjunction with the words to make the point even more clear.

When communicating with new partners, it can be useful to have an introduction that explains a little about how and why the individual is communicating as he is.  For example,

  • “I had a stroke and sometimes I forget what I am trying to say.  I’m very independent and want to find the word myself.  Please be patient with me.”
  • “When I have trouble thinking of a word or remembering something it is frustrating.  I will ask for extra time to think when I want to remember.  Please be patient with me.

Using these strategies will help both you and your communication partners feel more comfortable in a potentially uncomfortable situation.