Diagnosed with cerebral palsy at age six months, Mindy Thomas of Bluffton, Indiana has significant physical and communication challenges. Now in her 40s, married and a mother, she has successfully met those challenges with the help of augmentative and alternative communication (AAC).
As a young child, Mindy used a simple form of AAC to express herself: A picture board created by her mother featuring core vocabulary, numbers, and the names of family members and friends. She first began using AAC speech devices at about age eight and has used multiple devices over the years. Her current device is PRC’s Accent™ 1400 with the NuEye™ tracking system.
“There’s not a day that goes by that I don’t use my communication device,” Mindy says. “I use it for everything from talking to my daughter to job hunting to texting. I cannot tell you how much I wish I had had an eye-tracking device when I was in high school and college. I could have gotten things done a lot quicker and easier, plus my career path would have been completely different.”
Mindy lives with her husband Scott and eight-year-old daughter Taylor. While searching for full-time employment, she has recently started her own marketing consulting business to leverage her college degree and previous work experience. “I graduated from Ball State University with a general studies degree with minors in creative writing, telecommunications, and journalism,” she states. “Since then, I have taken some web design and marketing classes.”
“I am proud of Mindy's accomplishments despite her physical limitations,” says her mother, Linda Smith. “She hasn't allowed those limitations to stop her; slow her down, perhaps, but not stop her. Her abilities have outshone her disabilities due to her never-give-up attitude.”
Being the mother of a child with disabilities can be heartbreaking, Linda recalls, “but I was challenged to make her life as normal as possible. And she was the one responsible – she really didn't think of herself as disabled, she was ‘handi-capable.’”
The Biggest Hurdle: Communication
Of all the challenges her young daughter faced, Linda says, “the lack of speech was the MOST FRUSTRATING OF ALL, for everyone. Not knowing what Mindy needed or wanted was horrible. I ‘invented’ a very basic communication board using a piece of poster board sectioned off into quarters, with pictures of family members, food items, toys, etc. Mindy’s short range of motion made it difficult, but at least she could point to a particular section and we would go from there. Numerous boards were continually revised to meet her needs. I could probably wallpaper a room if I had kept all those boards!
“As Mindy grew, so did the need for better communication,” she continues. Once Mindy began using AAC devices, Linda recalls, “each new device opened more avenues of communication. No more guessing at what she was thinking, needing, or wondering – now we knew exactly! As a family it was a great relief to us that Mindy could finally verbalize her feelings, thoughts, and ideas instead of all of us putting words in her mouth. What she expressed was HERS.....not someone second-guessing.”
Mindy says family support was essential to her development. “Along with my parents, my younger and older brothers are a large part of who I am today.”
Motherhood as a Top Priority
Today, with the help of her husband and staff, Mindy oversees the regular household responsibilities, such as housework, laundry, grocery shopping, and meal preparation. But parenting is her first priority: “I am most proud of being a mom,” she states.
Scott describes their family as “typical. In the summer, we like to be outside doing walks, bike rides, going to the splash pad. In the colder months, we’ll do movie nights, read, or maybe a board game. Taylor is now at the age where cooking is becoming an interest, so Mindy will ask her to help with dinner or something special.”
Scott says Mindy is “tenacious, confident, and direct, with a great sense of humor. I often tell people she is just enough ornery to make it interesting. That's why I love her.”
Though Mindy had used AAC devices in the past, Scott says, she was moved by Taylor’s desire to hear her talk. “When Taylor wasn’t very old, she got Mindy’s word board and tried to put it in her lap. She wanted Mom to talk to her,” he recalls. “That had a big impact on Mindy researching AAC platforms. She wants to be a full part of Taylor’s life, just like any other mom. And the communication gap was greatly reduced with her having AAC. Simply having a ‘voice’ is huge for someone who is nonverbal.”
Advances in AAC Technology Create New Opportunities
“Forty years ago, I never, ever could have imagined Mindy's life as it is today,” marvels Linda. “She is a busy wife and mother with healthy ambitions to contribute to her family, church, and community. She spends hours at her computer reading, exploring job opportunities, banking, phoning, and, of course, using social media. She has been blessed to have such innovations in her lifetime. From using a small poster board as a little girl to adaptive equipment as a college student, wife, mother, and an advocate for those challenged in many ways, she has been determined and has persevered through many difficult situations and circumstances because she can ‘speak her piece!’”
A self-professed “daddy’s girl,” Mindy recently lost her father to ALS. As his disease progressed, he struggled to communicate. “It was difficult towards the end because the unusual type of ALS he had affected more of his mind than his body,” Mindy says. “He knew what he wanted to say, but it was like there was a wall between his thought process and the part of the brain that tells your mouth what to say. For me, it was harder because I knew how he felt, and I tried several things to help him be able to communicate.”
Helping Others Understand and Address Communication Challenges
“Communication challenges are far greater than society realizes,” Linda observes. “People can see the blind person with a white cane, the deaf utilizing sign language, and physical limitations requiring crutches, walkers, and wheelchairs, but when there is no way to verbally communicate, people turn away believing nothing substantive can result.
“Words cannot express the pride I have when I realize how much Mindy has had to overcome to become the woman she is today,” Linda adds. “Graduating high school, leaving home to pursue her college education, living on her own 100 miles away, all leading up to marrying her wonderful husband and having a daughter. Her perseverance is amazing. Yes, she gets down when job interviews result in denial letters, but she is driven to continue.”
Mindy appreciates having the opportunity to help others with communication challenges through her role as a PRC Ambassador, representing PRC and communicating with speech professionals and device users in the community and at industry conferences. “I think it‘s important that people know that there is technology out there that really can make a difference in someone’s life,” she observes.
Mindy advises others with communication challenges to explore their AAC options: “A communication device may seem different, but if you find the right one, it is well worth it.”