Navigating a Childhood Apraxia of Speech Diagnosis
Meghan O'Malley thought her son had a typical speech delay. She shares her experience helping her son learn to talk after learning the truth behind his motor speech disorder.
When first-time mom, Meghan O'Malley noticed her son, Damian, wasn't babbling like the other babies in his playgroup, she initially chalked it up to the whole "boys develop so much slower than girls" reasoning. "He was smart and alert and could follow directions, but at 18-months-old he still did not say any words," O'Malley, 31, says. Doctors dismissed any delays due to his age, but O'Malley felt something was off. "I was constantly feeling like I wasn't doing the right thing or enough, so I urged my pediatrician to have my son evaluated by a speech therapist," she says.
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As a child, O'Malley also experienced speech delays. Doctors had no explanation and diagnosed her with a form of cerebral palsy, but other than rarely speaking, O'Malley functioned like any other tot. After intensive speech therapy through third grade, she was interacting with her classmates on an age-appropriate level. "Once my speech was corrected, my parents didn't look any further into the cerebral palsy diagnosis," O'Malley says. But now that she saw similar speech patterns in her son, she wondered if the cause was related.
When Damian was 2 years old, a speech-language pathologist finally had an answer: suspected childhood apraxia of speech, a motor speech disorder that is complicated to diagnose before the age of 3.
What is Childhood Apraxia of Speech?
To speak, messages need to go from your brain to your mouth. These messages tell the muscles how and when to move to make sounds, all of which takes place in the blink of an eye and without any thought at all. If your child has apraxia, the messages do not get through correctly.
"Your child’s oral musculature (lips, tongue, jaw) may be strong and have a range of motion within normal limits, but the initiation, coordination, and execution of sounds may be impaired," says Ashleigh Wishen, a speech-language pathologist and clinical supervisor at Teachers College at Columbia University in New York City. Only 3 to 5 percent of kids have childhood apraxia of speech (CAS). According to the America Speech-Language-Hearing Association (ASHA), telltale signs of apraxia include inability or difficulty imitating what others say, difficulty initiating movements of the mouth or tongue, difficulty stringing words together to make a clear sentence, speaking in a monotone voice, and difficulty saying vowels.
It's important to note that a child with apraxia understands more language than they're able to use and are completely aware of what is going on around them. So, the brain knows what the lips and the mouth should do, and the lips and the mouth are strong enough, but the message to the oral part of the process is impaired.
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The Emotional Toll of Childhood Apraxia of Speech
"I was relieved that we finally had a real answer as to what was wrong, but that didn't mean there was going to be an easy fix," O’Malley says. Though Damian had started to receive weekly therapy treatments and made huge gains in his speech over the year, by the time he was 3, only his parents could make out what he was saying. "At birthday parties, when someone asked him his name, I could see the panic come over his face knowing that the person would not understand him," she says. "He was very self-aware for such a young person."
Damian wasn't the only one struggling with this experience. "I remember the hardest day was when Damian was trying to ask for his favorite juice. He kept starting to talk, but everything was coming out choppy, inconsistent, and mixed up, O’Malley says. “My husband and I must have asked him 10 times to repeat himself, which eventually wore him down so much he started hysterically crying and grabbed my hand to lead me to the fridge. I started pulling everything out to figure out exactly what he wanted. I was in a state of sheer panic that I couldn't understand my own child and help him with his basic needs. It was probably the worst feeling in the world, I was completely heartbroken and in so much pain."
That’s when O'Malley realized the process of teaching Damian how to talk was going to be a marathon, not a sprint.
Treatment for Childhood Apraxia of Speech
Research shows that therapy 3 to 5 times per week, alongside practice in the home, can help. "By the time a child is diagnosed, he is usually eligible for free speech therapy through early intervention at the local school," says Amy House, a speech-language pathologist in New York City who has treated children with apraxia. If financial resources allow, a family may opt for private speech therapy sessions with a specialist who treats apraxia or is trained in Prompts for Restructuring Oral Muscular Phonetic Targets (PROMPT).
"Functional communication is most important, so the child has some core words that can be used to communicate basic wants and needs," House says. Then, comes working on increasing the repertoire of consonants and vowels, as well as differentiating vowel sounds. A PROMPT-trained specialist uses tactile facial prompts to help the child initiate, coordinate, and execute certain speech sounds. The technique uses touch cues to a patients' articulators (jaw, tongue, and lips) to manually guide them through a targeted word. This develops motor control and proper oral muscular movements while eliminating jaw sliding and inadequate lip rounding.
Getting treatment as soon as possible can offset future delays in learning to read, spell, or write. "If left untreated for very long, the child will continue to have great difficulty with communication, which can lead to frustration, lack of confidence, and possibly social implications," Wishen says. The use of iPads and apps designed for apraxia therapy have recently changed the landscape for effective treatment methods.
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The Road to Recovery
O’Malley says Damian, who is now 5 years old, has made incredible progress since his diagnosis. "For the most part, you can understand what he is saying, which is huge!" she says. "He's able to self-correct his errors, and since he is extremely expressive, he'll use every part of his body to communicate with people—between his facial expressions, hand gestures, and the body movements he makes when he's telling a story, you'd think he is quite the entertainer." Just a year ago, Damian wasn't even able to say his name. "We practiced 'Hi, my name is Damian' more than 200 times a day, every day, this past summer, just so he would be able to introduce himself on this first day of Pre-K."
As part of therapy, a child with apraxia should repeat words, watch themselves talk in front of a mirror, touch their lips as they speak to feel how the mouth should move correctly, and even record themselves talking to hear how their words sound. "Every single thing we do at home is part of Damian's overall speech therapy," O’Malley says. Even though dedication and commitment seems like a tall task, the result pays off tenfold. "We're surprised every day by something new we learn about our son," she says. "Damian got a karaoke machine for Christmas and he started singing all these songs. Hearing him sing was definitely the best Christmas gift I ever could have received."
A Full-Circle Diagnosis
One day while digging through her parent's attic, O'Malley found her own childhood speech therapy records. After showing them to her son's doctors, they were almost certain that O’Malley suffered from childhood apraxia just like her son and was misdiagnosed due to a lack of knowledge about the condition in the late 1980s. "To this day, had I not gone through this with Damian, I would have always thought I was born with a brain injury—my own birth certificate still says it too," she says. "It's been a therapeutic process to better understand what my family went through so many years ago and finally put it all behind us once and for all."
Recently, O’Malley coordinated a walk for apraxia in Westchester County, New York, where she lives, to raise funds for Apraxia Kids, the leading nonprofit organization for the disorder. "It's important for other families, especially those newly diagnosed, to be aware of support groups and resources in the area so that there is less confusion when trying to help a child with apraxia," she says. "It can feel scary at first, and the process is grueling and intimidating, but it helps to build your tribe."
Damian and his close friend were presented with a proclamation by New York State Assemblyman, Mike Benedetto, that recognizes May 14 as the official Apraxia Awareness Day. Damian will start kindergarten in a general-education private school with smaller class sizes in September, while still receiving therapy treatments after school. While O’Malley knows her son still has a long way to go, she is constantly impressed by his ability to tackle his condition while remaining as happy and joyful as every other kid his age.