Martha Wilson has never heard her son speak.
In fact, Matthew, now 38, has never spoken—or moved functionally—on his own.
Martha was the one in 100 women per year who experience placental abruption, meaning the placenta cradling Matthew detached from the womb before he was born. This complication cut off his supply of oxygen, which led to quadriplegia, a severe form of cerebral palsy. Matthew’s cerebral palsy means though Matthew can vocalize, he cannot speak; and though he moves, he doesn’t have the control needed to execute even the smallest tasks.
The two were not able to have a “typical” conversation, but there was still a strong mother-son bond. She marveled at his sense of humor and he was always smiling.
“My son was 3 when we first came to Gillette Children's,” Martha says. “We weren’t really sure why we were referred to Gillette at the first appointment, but it didn’t take long to figure out that we were very fortunate to be there.”
What Martha wasn’t aware of at the time, was that Gillette (at that point) had more than 80 years of experience treating children who have disabilities. Today, the hospital boasts 121 years of experience in this field.
“Imagine our relief when we found out Gillette was created for kids just like Matthew,” Martha said of her and her husband, “Having a child who couldn’t move or speak was still hard, but Gillette’s support made it easier.”
Over the years, Matthew had several surgeries to make sure his body grew correctly and without pain. One of the most helpful surgeries was getting his intrathecal baclofen (ITB) pump placed. Martha says the pump “made him much more comfortable and relaxed, so travel was much easier.” He got his first specialized wheelchair at age 5 and had plenty of foot orthotics throughout the years.
As Matthew grew older, the equipment available to him became more advanced. Wheelchair seating became more comfortable and caused fewer aches. His ITB pump dosage was fine-tuned. But most important to Martha—communication became ever so slightly easier.
Learning to “Speak”
Because Matthew is quadriplegic, sign language was impractical. Even head switches (turning your head in different directions to indicate yes or no, or activate a switch) were problematic.
Despite these challenges, because Matthew always had a good understanding of his environment and was receptive to learning, Matthew easily learned to eye point. Eye-pointing is fundamentally the same as finger-pointing, but instead of extending a finger to direct the focus of those around him, Matthew used his eyes to focus on the object of his attention. The bliss board is a laminated poster with a grid of symbols, each with a different meaning like “water” or “mom”, and when combined with eye-pointing, Matthew could communicate his needs.
Still, eye-pointing is not ideal. For a long time, Martha felt she couldn’t connect with Matthew as deeply as she wanted. She knew when he was hungry or wanted to go outside. She could tell when he felt anxious or angry because of the bliss board and his facial expressions, but she often didn’t know the underlying reasons for these feelings. She still felt distant from her son.
“I never knew how he was feeling,” Martha said. “It was hard for me emotionally; I can’t imagine how hard it was for him, being limited by the communication options he had.”
“We learned that, for Matthew, the lack of speech is the worst part of his disability,” Martha said. “It sounds terrible to quantify any situation like this, but I know if we could have one thing back, it would be his speech. Your individual voice is what connects you to the rest of the world and the people around you. I want that for my son.”
Luckily, things got easier when Matthew got his first communication device computer at age 10. Finally, the communication device allowed Martha to delve deeper into his feelings in a way that the bliss board couldn’t. There have been few iterations of his iPad-like communication device throughout the years; again, each version became more and more adapted to severe disability, until finally the only distance that separates Martha from her son is the time it takes him to text, “Hi Mom.”
Communication is a Two-Way Street
Today, almost 30 years since the bliss board, his communication device has predictive text (like on our cell phones), so the computer helps Matthew figure out what he wants to say.
But like our cell phones, there’s a learning curve involved. Unless you’re part of the generation that grew up with cell phones and computers, you might find you have trouble learning the new apps or even new layouts of a phone if there’s a software update. The same goes for adapted communication devices—if you didn’t grow up with one, it’s hard to relearn every new update or feature change that comes out. And that applies not only the person using the device but also to the caregivers supporting them as well.
“It’s getting harder and harder for me to keep up with his new devices. I have trouble working my email, let alone learning how to operate a device as complex as Matthew’s communication equipment,” said Martha. The challenge lies in getting everyone in Matthew’s orbit trained on his communication devices. “It’s Matthew’s machine, but communication is a two-way street. I need to know how to use it just as well as him.”
Today Matthew can harness the full communicative power of the internet. Of course, it helps him communicate in real life, but Matthew can also text and email. He can search the internet, though it’s time-consuming. In some cases, it requires the help of staff, but more and more, he’s doing it himself.
It helps him emotionally in a way that was unavailable before. He’s learning language skills, socially connecting to people around him and around the world. “He socializes with housemates and calls us almost every night. He even texts and emails cousins and other relatives,” Martha said.
Run, Walk and Roll for a Cause
For example, Matthew recently called Joe Brown, his godfather, to ask if he would be the emcee for Gillette’s third annual Run, Walk and Roll festivities on June 9. Joe, of course, said yes.
Years ago, the three founders of the Run, Walk and Roll were itching to start a family event in support of Gillette. “Linda Henry, Lynn Leegard and I, all wanted to start a disability-friendly event for Gillette families. We also wanted the event to support a worthy cause,” Martha said. “For years, I silently wanted to support technology because of Matthew. I’m focused on the communication aspect because that’s what is closest to my heart, but riding trikes is important, too. Feeling motion and engagement, interacting with other kids, there’s no replacement for experiences like that.”
That’s why the three founders chose the Adapted Sports and Communication Equipment fund as the cause their event would support.
“I see it as the single thing—ITB pump, help with eating, seating, foot braces—I don’t know how I would ever say this is more than that,” Martha said, “ But the emotional and intellectual benefits of his communication device are irreplaceable for me.”
As for Matthew, he’s never let his disability stop him from living his life. He’s been whitewater rafting and parasailing. He loves fishing and hasn’t missed a ski season since he learned at age 7. On the home front, he’s excited to learn more about photography.
“Obviously Matthew is an adult now, but the thrill is watching the kids who get bikes and communication equipment at a younger age. The earlier this adapted equipment is available to kids who need them, the greater their potential in the long run.” Martha paused. “I’m so proud to be Matthew’s mom, I’m proud of all he’s accomplished, and we’re both so excited to help kids with disabilities like his get the devices they need to flourish.”
Perhaps it’s best to let Matthew have the final word.
Before he got his new computer, there was a stretch of six months when his old computer was continually malfunctioning or at the repair shop. Matthew was frustrated. He wasn’t able to communicate with his parents, caregivers or relatives as often or as well as before. When his new computer was set up, he immediately queued up his first entry:
“I feel like I have gotten my life back.”
Gillette’s Run, Walk and Roll is a 5K chip-timed run/3K fun walk, where teams can roll, stroll or run around beautiful Como Park and raise money to buy adapted sports and communication equipment that is custom-made for kids who have disabilities. This event is open to runners, walkers and rollers of all ability levels.
Join an existing team or sign up to Run, Walk or Roll here.
Is your summer weekend already too busy? You can still support Gillette. Donate to Team Matthew to show your support for kids who have disabilities.