“I love you, mom.”
It’s the one phrase Warren mother Melissa Bernard has eagerly waited to hear since she gave birth to her son Jason, on March 9, 2010.
Three-and-a-half years later, Melissa is still waiting.
Just over a year ago, Jason was diagnosed with Childhood Apraxia of Speech, a motor speech disorder where the brain has problems sending signals to move body parts associated with speech – lips, tongue and jaw.
Not much is known about what causes the disorder, and the National Institute on Deafness and Other Communication Disorders suggests its rooted in other genetic disorders or caused by stroke or brain injury. But Jason suffered from none of those.
“He’s easily frustrated, especially in social settings, because he knows what he wants to say he just can’t say it,” said Melissa.
Melissa knew something wasn’t right when Jason was about 17-months-old.
“The normal babbling and cooing wasn’t happening when he turned 1,” she said. “But the pediatrician assured us that he was an early walker, and he was concentrating on his gross motor skills.”
Several months later, with Jason still inaudible, Melissa and her husband sought the help of a speech therapist and enrolled their son in an early intervention program.
Jason received intensive speech therapy, utilizing an iPad to communicate and practice sounds. He also learned some sign language as a way to ease his frustrations when communicating.
“We try not to use the sign language as much because we don’t want him to rely on that as a sole means to communicate,” Melissa said, “so we work with him constantly.”
Since children with Apraxia cannot communicate their needs effectively, often behavioral issues emerge and a child could struggle in social settings.
“It breaks my heart sometimes, when we’re at the park and he starts playing with other kids and then when they realize that he can’t talk, they sort of go their own way,” Melissa said.
When Jason was first diagnosed, Melissa initially felt helpless, knowing nothing about Apraxia. Little data is available about how many children are diagnosed with the disorder, and even more rare are resources to help families struggling to combat it.
Then she found CASANA – the Childhood Apraxia of Speech Association – a non-profit organization based in Pennsylvania whose mission is solely to support research and help families affected by Apraxia. It was founded by its director Sharon Getz, whose son was diagnosed with a severe case of the disorder over 12 years ago.
“Little is known about it and through CASANA we bring awareness,” Sharon said. “We are the only organization dedicated to raising awareness about Apraxia.”
What is known, Sharon said, is that with with appropriate early help, nearly all of the kids will develop intelligible speech.
“The extent depends on whether there’s co-existing problems,” she said. “Many kids may get to the point where no one will ever know there was a speech problem.”
Her own son, now a teenager, is enrolled in high school, sitting alongside his peers in a typical academic setting.
“It was painstaking to watch, with more than 200 speech therapy lessons,” said Sharon. “But the persistence of both him and his speech therapist, it would be an understatement to say it was inspiring. It fueled my passion and desire to see that kids with Apraxia get the help they need.”
CASANA utilizes donations through community walks and other grants to fund its programs, such as iPad for Apraxia. Families of low to moderate income are given iPads with protective cases so they can incorporate apps into a child’s therapy program.
“We found early on in a pilot program that tablets and apps can helps kids in terms of speech practice,” Sharon said. “And they are communication tools for them, when they aren’t able to speak for themselves yet. It’s augmentative communication.
“For many families, having a dedicated tool like this for their child is out of the realm of their budgets.”
Rhode Island will have its first-ever Walk for Apraxia this Sunday, Sept. 15 at Colt State Park. Registration starts at 9 a.m. and the walk starts at 10. Currently, there are more than 200 participants and nearly $11,000 has been raised.
“I never thought we’d have this much participation,” said Kendra Jenkins, a Portsmouth mom whose son Talan, 4, also suffers from Apraxia.
“He was diagnosed just before this third birthday,” she said. “He walked late, crawled late, so we just thought he was a late bloomer and was taking the scenic route.
“Once we got the diagnosis, it was hard. I had no idea what it was. Our first reaction was, ‘Will he ever speak?'”
Like Jason, Talan was hardly babbling, opting for sounds and grunts to communicate his desires.
“His main form is sign language. He still only says about eight words.”
Kendra also turned to the web to learn more about the disorder, discovering CASANA.
“I jumped in head first,” she said “I thought about how great it would be to get involved and raise awareness about Apraxia. I contacted CASANA and started organizing the walk a few months ago.”
Kendra also started a support group-Facebook page for Rhode Island families affected by Apraxia, Rhode Island Apraxia Families.
“It’s comforting to find others going through what we’re going through,” she said. “We can get together, talk about our journey and have a safe place to go and cry to someone who understands.”
Melissa hasn’t been to one of Kendra’s playgroups yet, but is looking forward to Sunday’s walk.
“We’re not alone,” she said. “I can’t tell you how good it feels to know there are other moms who know exactly what I mean when I tell them what we’re going through.”