Conway mother Beth Layton thought her then-18-month-old daughter wasn’t talking, or even babbling, because she was the youngest of four children.
“People said, ‘She doesn’t have to talk; they talk for her,’” Layton said. “I figured she was kicked back and taking it all in.”
After her pediatrician insisted that Layton should get Katie tested, the reality was that the toddler couldn’t talk because of a neurological disorder called childhood apraxia of speech.
“You hear speech delay — this is not a speech delay — it’s a disorder; there’s a big difference there,” Layton said. “In [verbal] apraxia, the muscles are fine, but it’s just the signal between the brain and the muscle is either miscommunicated or lost. The brain tells the mouth how to move. They call it a motor-planning disorder.”
Acquired apraxia typically is the result of a traumatic brain injury or stroke, either in adults or children. Childhood apraxia of speech is from birth, and the reason for it is not known, Layton said.
May 14 is Apraxia Awareness Day, and Layton said her goal is to get information out to help other parents.
Her 5-year-old is making progress, thanks to intensive speech therapy, Layton said.
“Speech therapy — if you do repetitive, very
intensive, very frequent speech therapy — eventually does help,” she said. “Until the last nine months, she couldn’t even say her name. After all this therapy, we’re beginning to see how massive her vocabulary is.”
A child can have apraxia secondary to something else, Layton said. For example, an autistic child could have apraxia.
“Speech therapy isn’t always needed for autism; it’s always required for apraxia,” she said. “A child with apraxia will not be a verbal communicator without intensive therapy.”
Katie goes to speech therapy four hours a week at Access Group in Little Rock.
Cherie Stevenson is director of operations at Access Group and a speech pathologist.
“Apraxia is a form of an articulation disorder; it’s just a lot more severe and can be complicated to remediate,” Stevenson said. “The things we know — the earlier it’s identified and the earlier intensive treatment is put into place — the better chances we have of making a significant change.”
A child who never babbled as a baby — “that’s one of the biggest red flags,” Stevenson said, also babies who couldn’t nurse.
Layton said, looking back, the fact that Katie couldn’t nurse was a sign. “We went through five different kinds of bottles until we found one she was most successful with,” Layton said.
She also couldn’t form a tight seal with her lips when she transitioned to sippy cups, Layton said.
Layton said she is thankful that her pediatrician in Conway stayed on top of the problem. When Katie was 15 months old, the doctor expressed concern that she wasn’t talking; at 18 months, “he made us go get evaluated,” Layton said.
Connecting with other mothers whose children have apraxia has helped, too, she said.
One of those women is Hannah Faulks of Benton, whose almost 4-year-old son Max has been diagnosed with childhood apraxia of speech.
She and her husband, Clint, also have a 6-year-old son, Pratt. “When we had Max, of course, we compared everything he did to what his older brother did,” she said. When Max was 18 months old, “I knew his words weren’t where they should be.”
The pediatrician wasn’t worried, she said, but he referred her to a business that provides therapeutic services to children. Max had low muscle tone, so he qualified for physical therapy, as well as speech therapy.
“He didn’t sit up on time; he didn’t crawl on time,” Faulks said.
Children who have apraxia often have accompanying issues, Layton said, impacting functions other than speech.
Stevenson said when the limbs are involved, it’s called “global apraxia.”
Layton said Katie’s apraxia has been referred to as global apraxia. “She’d walk into walls; she would not step down stairs; she’d walk over curbs,” Layton said. She can run and play now, although she still falls. “She had a goal for probably a year of jumping and both feet leaving the ground.” Katie takes occupational, physical and speech therapy, Layton said.
“If the primary diagnosis is apraxia, there’s a high probability of having a sensory-processing disorder, or dyslexia, or something else,” Layton said.
Any child with a speech delay or speech disorder, and apraxia is one of them, “is at higher risk for having reading issues when they get into school,” Stevenson said.
Faulks said Max’s speech therapist, after working with him for a few weeks, told her she thought Max had childhood apraxia of speech. Faulks said the therapist told her that Max’s vocabulary was not increasing as it would if it were a more garden-variety speech delay.
Faulks, who was in medical school for a year, said she was familiar with apraxia in stroke victims.
“Of course, I Googled it. I went to YouTube, and the kids who were on there sounded just like Max — textbook apraxia,” she said.
Faulks said Max’s speech therapy was immediately bumped up to 240 minutes a week. He has verbal apraxia and oral, “which means his mouth didn’t move properly,” Faulks said.
Because apraxia is a disorder and not a delay, “he will randomly say something, and it sounds perfect: ‘I roll my window down and throw my gum out.’ If I ask him to repeat it, he can’t; it’s just lost. It’s just a bizarre thing,” Faulks said.
Max has the expressive vocabulary of a 2-year-old, but “what he understands is up there with a 6-year-old. … What we want other people to understand is, while he doesn’t sound like he knows, he absolutely knows. Sometimes people say, ‘What’s wrong? Can he not talk?’ That’s where some of the frustration for some of these kids comes,” Faulks said. “Can you even imagine all that’s going on in their heads, yet they can’t get it out?”
Faulks said that as a stay-at-home mother, she wasn’t quite ready to send Max to preschool at first. Faulks said Layton encouraged her to do so, telling her, “Katie has just blossomed.” Faulks enrolled Max in a preschool class in August at the same school Katie attends, and “he’s really made progress,” she said. “We didn’t hear any sentences a year ago in August.” His speech is “still jumbled, but you know what he’s saying,” Faulks said.
Neither woman knows how long her child will have to undergo therapy, or what the ultimate results will be.
“It is my understanding that it never goes away. It will always be something they have to really formulate, and think about what they say. It gets easier as they get older,” Faulks said.
Stevenson said what the professionals have found is that children who get intensive therapy — and it is carried over at home — do the best.
“They need to do their homework,” she said. “Those are the kids we see make the best progress.”
Layton said that as children with apraxia get into school, they often need assistance. Some will have classroom aides; some use assisted-communication devices. “We’re not there, yet. You learn as you go,” she said.
Insurance policies differ in coverage of apraxia, too, she said.
“Some policies will specifically deny apraxia. My plan will cover acquired apraxia but not apraxia that you’re born with,” Layton said. “We have fought for 1 1/2 years and just got approval for three months. I’m just trying to get it to count toward my deductible.”
However, “the wonderful thing about Arkansas,” Layton said, is that funding is available for medical assistance through the Tax Equity and Fiscal Responsibility Act. “They do cover her therapy, and they also cover her school. That’s amazing because most states do not have that option,” she said.
There is more good news, Layton said. Act 1178, which the Arkansas Legislature enacted this year, allows a child who has been in public school for a year and who has an individualized education program for developmental issues and special needs to transfer to a private school with the state funding that the public school district would receive for the child paying the private-school tuition.
Layton said she undertook a T-shirt campaign. “There were no awareness T-shirts for apraxia,” she said. “I asked a whole bunch of moms to give me words that best describe apraxia, or their kids,” Layton said. She had those words printed on T-shirts. The words included aggravating, misunderstood, a struggle, motor-planning disorder, treatable and not the final word. She had a graphic designer who volunteered her time, and Layton said she sells the shirts at cost. Any additional money made will go to a tuition-assistance fund at Katie’s school, she said.
Katie’s story is available at Facebook.com/ katieskrew.childhoodapraxia, and Layton said anyone who wants a T-shirt can send her a Facebook message or email her at bethblayton@gmail.com.
“We’re so open with Katie’s journey because so few people know about it,” Layton said.
She said her 8-year-old daughter, Hannah, is concerned that Katie might be bullied, so Hannah plans to read a story to the entire second grade at Jim Stone Elementary School.
“She is the best thing in the world for Katie. She is her protector; she is her role model,” Layton said.
More information about the disorder is available at apraxia-kids.org.
“If there is no speech between 14 and 18 months, they need to seek an assessment,” Stevenson said, “and when I say no speech, I mean no speech — no babbling, no sounds.”
Layton and Faulks said they have no doubt there are parents out there now who have children with apraxia and don’t realize that’s the problem.
“If a parent sees their child is not making progress, they need to ask,” Layton said. “I didn’t know, and this wasn’t my first kid.”
Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.