Severe Apraxia: Tucker's Story
Five-year-old Tucker is beside himself with delight.
He has just put three words together – and made something good happen.
“Car – go – up!” he says. And it does.
Tucker is working with a speech language pathologist at Johns Hopkins All Children’s Hospital. She is helping him to understand that words have power. On this day, a colorful array of toy cars and accessories are spread out on the table in front of them. Bright sticky notes with simple words written on them line the table’s edges to reinforce what Tucker is learning.
Then it’s all about reinforcement and repetition. A small boy’s personal motivation doesn’t hurt either.
It sounds like a small thing – to put a few words together to communicate a desire or need. But it’s not small for Tucker.
Born early, weighing less than 4 pounds, Tucker spent the first several months of his life in the hospital. He has undergone multiple surgeries and has developmental challenges including severe apraxia, a deficit in the ability to plan and program the oral movements necessary for speech.
Tucker had been receiving some limited therapy each week, but he had been slow to progress. By age 5, he had a vocabulary of only two or three functional words. His inability to communicate left him frustrated, isolated and prone to meltdowns.
Therapists could see that Tucker was a bright and determined child, and that he was motivated to imitate sounds. But he simply wasn’t making the language connection. What would happen, they thought, if Tucker was given several weeks of intensive speech therapy? Five times a week, twice a day, full immersion?
The family committed fully, with Tucker’s mom, Jamie, moving with her son from Arcadia, Florida, into a nearby Ronald McDonald House for the summer weeks when the therapy would take place at the hospital’s Childhood Development and Rehabilitation Center.
It didn’t take long for Jamie to see changes in her child. Tucker responded beautifully to the intensive speech therapy. Not only was he mastering new words, he was learning how to use them to meet his needs. He was beginning to get it.
“I could just see the progress he was making,” says mom, Jamie. “It was so fast. It was kind of unbelievable.”
The sessions were good therapy for Jamie too. By watching the highly skilled therapists make progress with her son each day, she was learning how to work with him more effectively at home.
Tucker’s intensive therapy may not have happened were it not for a special gift from the Guinand family. The Guinands’ little boy, Phillip, made great strides with similar intensive speech therapy at Johns Hopkins All Children’s, and the family had a desire to give back.
“There are so many kids who face similar challenges as Phillip, but do not have the means to participate in therapy,” Brenda Guinand says. “We want these kids to be able to have an opportunity like Phillip did — to receive therapy that will impact their lives in a huge way.”
As for Tucker, he ended his intensive therapy sessions with close to 40 new words — words that continue to empower him to navigate his world. His mom says those core words have simplified their lives and made Tucker a happier child.
“It’s amazing to have these resources,” Jamie says, “especially when you are unsure and unclear what the path is and what’s ahead of you, to have these people who care and who are brilliant.”
Tucker will always need extra help. He is bravely forging his own path. But a door has opened for this little boy that was closed until now. He is learning what it feels like to be understood. And that is everything.