By Benjamin Joe
Every child deserves a voice. That’s the motto of Apraxia Kids, a group that sponsors walks all over the country, as well as other initiatives, for this little-known speech disorder.
At 10 a.m. Saturday, the 2019 Western New York Walk for Apraxia will begin in Raymond Klimek Veterans Park at 700 River Road, North Tonawanda. The purpose of the walk is to spread awareness, erase stigma, and give every child with apraxia a day just for them.
“What we often see is that parents of kids with apraxia might not receive an accurate diagnosis till 3 or 4 years of age, so we have funded preliminary research of early indicators of childhood apraxia speech in children as young as 18 months,” said Kara Bayer, marketing manager for Apraxia Kids. “Right now, we’re working to raise awareness of what those early indicators might be among the professional community, both speech-related and non-speech-related professionals, so they can accurately diagnose these children a lot earlier and, if not diagnosed, give them a referral to a speech pathologist or early interventions professional that could begin therapy a lot earlier. That might have significant improved outcomes for these children over time.”
According to the Apraxia Kids website, childhood apraxia of speech, or CAS, is a motor speech disorder that makes it hard for children to speak. Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex movements that underlie speech. It goes on to say a child with apraxia has difficulty planning the movement sequences required for speech. This results in inconsistent errors and difficulty with smooth transitions from sound to sound or syllable to syllable to form words, phrases and sentences.
Testing for CAS requires the speech-language pathologist see what the child’s oral-motor skills and motor speech skills are, as well as the way they use pitch in their language.
Apraxia Kids helps these speech-language pathologists by being a resource of information.
“We provide a wide variety of educational opportunities for speech-language pathologists,” Bayer said. “Our organization is actually really small. We only have one office in Pittsburgh and about 12 staff, but we have about 70 walks across the U.S., and we’re focused on those high-level items that can have a really significant national impact.”
“One of the things we do is we have webinars on our website. So, even speech therapists in the most remote areas of the country can access this quality education from the convenience of their home in a time that makes sense for them,” she said. “We also do the only national conference on childhood apraxia speech, and that’s held annually every year, and brings together parents and SLP’s to learn about childhood apraxia speech.”
Bayer said Apraxia Kids’ focus on education trickles down to where professionals can help children at earlier intervention points by seeing the indicators of apraxia in their speech.
“There are multiple different things we like to say about the walk,” Bayer continued. “Awareness is a huge aspect of that. They’re raising awareness at the local levels through contacting sponsors and vendors, bringing people together, and that visible presence within the community on the day of the walk does help spread the word about what apraxia is. The goal for that is many families when they first hear the word apraxia is when their child is diagnosed. So, our goal is that one day when parents have a child that is diagnosed with apraxia, they’re able to say, ‘Oh, I’ve heard of that before.’ That’s so rare when someone is diagnosed that they’ve heard the word apraxia before.”
Another benefit of the walk is connection. According to Bayer, only 1 in a 1,000 children has CAS. That means the child and his or her parents could quite easily not know anyone else in their community with apraxia.
“For a lot of these families it’s a very isolating experience because they don’t know anyone else that has apraxia,” Bayer said. “To bring everyone together within a particular region of a state is really impactful for these families.”
“I just traveled to New York City last week for one of our walks there,” Bayer explained. “One of the parents that was there for the first time, and she said she had never felt more connected, empowered and hopeful about her child’s future because she had never seen other children with apraxia or what their journey will look like when they’re 9 years old or 16 years old or 25 years old. It’s a lot more than raising awareness; it’s also that sense of community and that hopefulness, that knowing that, maybe someday, their child can overcome apraxia.”
Bayer said at Apraxia Kids, most children diagnosed with apraxia are able to achieve functional speech. A lot of that stems from early intervention, correct and frequent speech therapy. However, sadly, not all children with CAS will complete that goal.
“The Western New York Walk for Apraxia gives children a special day to celebrate who they are and how hard they work to overcome their struggle with apraxia,” walk coordinator, Laura Maciejewski said in a press release. “It shows them that they are never alone in their struggle, and their family, friends and community are always by their side. The walk is so much more than just a walk. It is a day to show our love and support to every child and their family struggling with this disorder. It gives them a day that is all theirs and allows an opportunity to show them how exceptional they are. If you have never been to a walk, please come and experience it! We know you will have a great time.”
More than 130 participants are expected to attend. There will be crafts, games, and activities and a medal ceremony in which every child with apraxia will get on stage and receive a medal that says, “I’m a star!” Bayer said each event is different, but the recognition of the hard work of these kids and families is a hallmark.
“It’s these parents,” Bayer said, explaining why Apraxia Kids continues its service. “They wait so long just to hear their kid say, ‘I love you.’ That’s something you don’t think about before you don’t have it.”