Megan Conder knows her son Noah would rather be somewhere else playing.
As she begins their daily exercise of going through sheets of sounds and words for the 5-year-old boy to pronounce, she occasionally has to remind him to stay focused.
Sometimes he gets frustrated and cries, but his performance in the drill gives his mother reason for hope.
“He’s had a great year,” she said. “He’s come so far since he was properly diagnosed.”
Last summer, Noah was diagnosed with childhood apraxia of speech. Apraxia is a disorder that affects the brain’s ability to send messages to various parts of the body involved in speaking.
While most people use their lips, tongue and jaw without really thinking about it, a child with apraxia is unable to transmit those messages to their muscles. As a result, making sounds, especially multisyllable words or words in combination for sentences, is difficult to impossible without intensive therapy.
The problem in Noah’s case, and with many children with the same speech disorder, is he wasn’t properly diagnosed until around his fifth birthday, last summer.
For a few years, Megan Conder and her husband Jason struggled to understand what their child — the youngest of four — was going through.
“He did not start talking for a long time. He never babbled as a baby,” she said. “I kept questioning the doctor, and it kept getting chalked up to ‘He’s the fourth child. He’s going to be later. Everybody’s talking for him.’”
Megan continued to press the issue. She enrolled Noah in First Steps, an early intervention program, when he was 2. Noah continued therapy through Center Grove schools.
“He made progress,” Megan said. “But it was very slow.”
After seeing five therapists, Noah was still mostly monosyllabic when he turned 5. At one point, it was suggested that Noah was autistic, but no diagnosis was ever made.
The uncertainty was frustrating and frightening, Megan Conder said.
“It was discouraging, because it was such an unknown,” she said.
“You rely on a therapist to tell you, but nobody could give us an answer. You just knew something was not right.”
Apraxia is not new, but research on it is limited, said Dr. David Hammer, a speech pathologist and director of professional development for Childhood Apraxia of Speech Association of North America, or CASANA, a national organization dedicated to childhood apraxia research and treatment.
And information on the disorder, including therapies, has not been widely disseminated among the speech pathology community, Hammer said.
“It can be challenging (for a therapist), and as a result, there is some misdiagnosis that goes on,” he said. “There are some overlapping features (with autism) that can be confusing for parents, pediatricians and even speech pathologists. The differential diagnosis is important to make of course, but that’s not always easy to make for toddlers.”
Hammer was part of a committee in 2007 that identified three main, distinguishing characteristics of the disorder. These include inconsistent speech errors, changing sounds to be like the sounds in words used before and after, and problems with inflections that would change the meaning of a sentence, such as with a question. The cause of the disorder is unknown, but CASANA estimates the motor disorder affects approximately one out of every 1,000 children.
The Conder family still had not heard of childhood apraxia when Noah started visiting Tracy Needham, his sixth therapist.
Noah was old enough now for Needham to do several tests, finally confirming he had apraxia. Needham, a New York native practicing in the Indianapolis area at the time, recognized potential in Noah but had to get to the bottom of what wasn’t right and begin helping him to see it as well, she said.
“(With some conditions) the speakers know they are not doing it right, but with Noah that awareness wasn’t really there,” she said. “For some reason when he went to say sounds, that brain-muscle connection was not there.”
Needham noticed that Noah didn’t appear frustrated when sounds he was speaking were incorrect. Needham knew the child needed to be more aware of the condition before he could make more significant progress.
“If you go into therapy and just keep on drilling and all the while he’s wondering why, you’re not really going to make progress,” she said.
Needham researched the disorder and therapies, and found the Kaufman Approach, named after a physician who pioneered it. The approach centers on what the child can already do, breaks that down in fine detail and builds from there. Needham designed a therapy program with a focus on combinations of sounds.
“That gradual approach I found is what worked best for Noah, and we came pretty far in just under a year,” she said.
Needham incorporated a multisensory approach with Noah, utilizing sight, sound and touch to help teach him what he was doing wrong and how to do it right.
“We give visual clues, auditory cues, point to his lips when he makes a B sound or to the back of his throat for something guttural,” she said. “Since with apraxia the connection with the speech muscles is not really there, it really helped to use his senses to give that tactile feedback.”
In one exercise, a therapist or parent places a finger below Noah’s jaw line to remind him where a particular sound was coming from. Then he would say the next 10 words perfectly, Needham said.
Needham saw Noah three times a week. She viewed her role mainly as a coach for Megan Conder and anyone else who would be helping Noah in his therapy. The therapy she designed involved a progression from sounds to words to sentences and then to spontaneous sentences. The idea is that you can’t master speech without continuing to work on the early steps.
“It can be frustrating if he can do well in therapy but not go back to mom and start having perfect sounds,” Needham said. “You have to keep reminding yourself how to talk correctly.”
Needham met Noah at his level, such as by playing on the floor with him until he was more comfortable and settled to do the hard work of therapy. She also worked on therapy in shorter bursts of time to avoid frustrating the typically active 5-year-old.
“We go for 30 minutes at home, most days,” Megan Conder said. “Pushing beyond that doesn’t really work, because you’re always taking him away from something else in order to do it. His brother Michael is always in the other room doing that thing Noah would rather be doing.”
Needham credits Noah for much of the progress he has made.
“I could see he was so smart otherwise,” Needham said. “He would understand anything I gave him to do.”
Needham recently returned to practice speech therapy in New York, so Noah is now working with a new therapist and continues to make good progress, his mother said.
Noah’s education is one of Megan Conder’s biggest concerns now. Noah is slated to begin kindergarten in August.
Her biggest fear is that his speech disorder will be misinterpreted by teachers, therapists and other school personnel.
“It’s been a lot of anxiety, because I have this fear that there’s an assumption by strangers because he can’t talk well or say words properly that he has a mental issue, and that’s not it at all,” she said.
Deciding to send him to public school was difficult, but Megan Conder plans to be heavily involved, she said.
“I don’t want to be the hovering parent, but I want to make sure he isn’t left behind or not given a push when I know he could use a little push,” she said.
“I know he has potential, and I want him to go to college and succeed. He can. There are a lot of adults who had this who are living successful, normal lives.”