Children with rare neurological speech disorder apraxia rely on therapy

When Curtis White came to live with his adoptive family about seven years ago, his parents noticed he didn’t babble like most kids.

Curtis, now 8, was adopted from South Korea. At first, his parents, Chris and Cathy White of Owensboro, blamed the language barrier.

The Whites gave their son time to acclimate. But, after he turned 2, they sought the help of a speech therapist, who diagnosed Curtis with childhood apraxia of speech, a rare neurological speech disorder.
In a nutshell, apraxia leads to scrambled signals between the brain and mouth, making speech difficult.

Children with apraxia are bright. They understand what they hear and know what they want to say in return, but they struggle to carry out all the complex processes — involving the brain, face, mouth, tongue and soft palate — that form syllables and strings words together.

There is no known cause or cure. Children with verbal apraxia don’t grow out of it. Speech therapy is required to teach them how to speak. During the process, some families use sign language to communicate.

Little data exists but national health officials estimate only one out of every 1,000 children will be diagnosed with apraxia.

With therapy, Curtis was able to say up to 10 one-syllable words when he was 3.

He couldn’t say his name until he was 4.

Cathy Curtis remembers the date: March 29, 2015.

“These are things other parents take for granted,” she said, wiping away tears.

By his 5th birthday, Curtis could string a couple of words together.

“I don’t think people understand the hours these kids have to put in so they can speak,” his mom said.

Jessie Hurm’s story sounds similar.

The 7-year-old Owensboro girl is one of Tina and Bob Hurm’s adopted children. Jessie joined the family just after her first birthday.

“She didn’t cry. She didn’t babble,” Tina Hurm said.

The couple thought past trauma might have accounted for her silence. Also, another sibling was very verbal, so the Hurms thought he might be hampering Jessie’s attempts to speak.

The first time Tina Hurm heard her daughter talk she couldn’t understand the words.

“I later caught on to her language when I figured out she only said vowels,” Tina Hurm said.

At first, Jessie was diagnosed with selective mutism, an anxiety disorder that hampers speech. It took a while before a therapist diagnosed her with apraxia.

When Jessie and Curtis went to preschool, their parents shared the same concerns. Their children couldn’t tell anyone if they were ill. They couldn’t tell anyone if they were bullied. They couldn’t participate in activities requiring speech.

Also, singing is difficult for children with apraxia. When Curtis’ preschool class sang for parents, he stood on the stage in silence.

Adults with apraxia often sound like they have a foreign accent, Cathy White said. “You’ll always be able to tell there’s something different.”

Jessie and Curtis come to Wendell Foster for speech therapy. Kristy Hampton is the nonprofit’s speech therapy director.
Currently, 10 children at Wendell Foster have been diagnosed with apraxia.

“The prognosis for most children with verbal apraxia is good, especially with consistent therapy,” Hampton said.

Each child’s journey with apraxia is different. As with autism, there is a spectrum of mild, moderate and severe cases.

Curtis went to an intensive two-week program in Michigan, which proved helpful. Jessie attended the same camp, but with no progress.

Other learning issues often coexist with apraxia, such as dyslexia and attention deficit disorder. Apraxia can affect reading, spelling and other subjects.

Curtis has been in speech therapy about six years and has made a great deal of progress, his mom said.

He went through the first grade twice so he could catch up on reading skills. It was a torturous decision to hold him back, Cathy White said. She shed many tears over taking him away from classmates and friends, but she’s happy with the decision now. Curtis is doing well in second grade at Sutton Elementary School.

“He still has a lot of anxiety about his speech in front of others,” his mom said. “A lot of times when he speaks to people he will have to stop two or three times.”

She’s proud of his hard work and never-give-up attitude.

She used to speak for him all the time, but, through his grit and determination, he has earned his own voice.

Renee Beasley Jones, 270-228-2835, [email protected].