MILFORD, Ohio (WKRC) – A simple keyboard is giving a local young man a voice he has never had.
Jakob Jordan, 24, has nonverbal, severe autism and apraxia, making it difficult for him to speak and express how he feels.
Most of Jakob’s life has been defined by what people could see on the outside. He was diagnosed at age three.
“Apraxia causes a brain–body disconnect where the body doesn’t do what the mind wants it to do. That includes speaking the words that he wants to say. It includes the way his body moves,” said his mother, Jenn Jordan.
For 20 years, Jenn worked to understand what Jakob needed.
“I just wanted for him to be able to tell us what he needed, what he wanted, how he felt, what his hopes were, what his dreams were,” she said.
Jenn is living her own dream as a longtime radio personality on Q102. As someone who talks for a living, she wanted Jakob to speak for himself, too.
“I was not going to leave this earth not doing everything I had in my power to help him be everything he could be,” she said.
Now they believe they have found the answer: a keyboard.
“So much of my life I have spent trapped in a body that wouldn’t let me communicate the thoughts that have always been in my brain,” Jakob typed on his iPad.
For the first time, people can understand who Jakob is on the inside — a thoughtful, intelligent person.
“My body is the best trickster there is. I will yell and fight about things that my brain actually really wants to do,” he typed.
Jenn says the keyboard has allowed Jakob to express what he truly wants. For much of his life, he acted upset when asked to try new foods, but that was never what his brain wanted.
“He ate the same foods every single day for 20 years, and he spells that he wants to try new foods. Over the course of two years, he’s tried over 600 new foods,” Jenn said. “He tells us things like he wants to find a girlfriend. Never would have guessed that.”
Jakob now has a girlfriend, Jasmine, whom he has been dating since June.
“I don’t like to hold hands. It’s hard,” Jakob said aloud.
Then he spelled what he truly felt: “My heart and brain want to hold her hand so badly.”
Sitting beside Jakob as he types is his communication partner, Madi Fox.
“My job is not only to hold the keyboard and help them communicate but to also make sure that he is regulated, because if there’s not regulation then there is no communication. He needs to be able to regulate his body so his brain can be in charge,” Fox said.
For now, Jakob cannot spell without a trained communication partner to help keep him focused.
“You got it. Ready? You got it — you’re going to fight it,” Fox told him as he typed.
Fox works with more than 20 people learning to communicate at Kidpower Therapy Services in Clermont County’s Miami Township.
“It’s a very long process to go from never spelling before to open communication,” she said. “Sometimes when you start spelling with someone, their body will appear as if they don’t know how to spell. Now I know that their brain knows how to spell, and my job is to help them get their body to do what their brain wants.”
Eleven of her spellers have reached open communication, which means Jakob can now spell with friends like Cass.
“How cool is this, my man,” Jakob typed.
“Have to say this may be the coolest thing ever,” Cass replied.
“I agree. Happy to have you by my side, Cass,” Jakob typed.
Jenn says the ultimate goal is for Jakob to type independently without a communication partner.
“It does not happen very often, but it does happen. And if there’s one thing I’ve learned all these years, bet on Jakob,” she said.
She recalled one conversation she will never forget.
“We were in the middle of having a conversation about toilet paper of all things, and out of nowhere, in the middle of this toilet paper conversation, he spells, ‘I love you, Mom,’” Jenn said.
They were words she had never heard from her son.
“I feel so lucky to have a mom who now understands the brain–body disconnect so well,” Jakob typed.
Jenn knows countless parents are hoping to one day have a real conversation with their child.
“It doesn’t just set them free; it sets you free, too, of that worry of what’s going to happen to them when I die. Because if they have communication — communication is everything — they will be able to tell people what they need and advocate for themselves,” she said.
Jakob is now using his newfound voice to help others with autism and apraxia. He wants them to be heard and to know they are not alone.