CRESTVIEW — Many parents anticipate hearing their children say his or her first word.
Especially if it's "Mommy" or "Daddy."
Baby's first words usually come within 11 to 14 months after birth, according to Parenting magazine. But some parents, like Christina Sims, have to wait much longer.
The Baker woman's 3-year-old son, Bentley Lefevre, has childhood apraxia of speech, or CAS, a motor speech disorder.
It's not a muscular problem; there's no paralysis.
"The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech," the American Speech-Language-Hearing Association's website states about CAS. "The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words."
'A DIFFICULT THING'
Sims said her son tested positive for autism, and a Pensacola physician gave a referral for a Gulf Breeze neurologist.
"They read his brain waves while (he was) sleeping and (flashed) a light to see if he had epilepsy," Sims said. "Our test came out normal. He's had an MRI — normal — blood work, everything keeps coming back normal."
While medical tests show no abnormalities, Sims' own observations concern her.
"He cannot speak — not even one word," she said. "I've never heard him say Mom, Dad, bye-bye — not one word. And it's a difficult thing to deal with.
"Then our family and people in our community pass judgment on others, when they should be educated about issues that may surround them, and realize things may go deeper then what they may see."
RAISING AWARENESS
Thursday, May 14 marks Apraxia Awareness Day, according to The Childhood Apraxia of Speech Association of North America, a nonprofit, publicly funded charity.
Sims wants local residents to know about what the Mayo Clinic's website refers to as an uncommon speech disorder.
"I want to bring awareness to our community about this speech problem in children because it is still little known, very misunderstood, and has a huge impact on kids and families," she said. "These children must work and struggle so very hard just to learn a skill — speaking — that comes effortlessly to other children.
"We need to find ways of supporting children with apraxia and their families because speech therapy, the only proven treatment for apraxia, is quite costly and will extend over many years for these children."
'THE BEST THING FOR HIM'
Although Bentley can't speak, he has his own strengths.
"He can't talk but he can climb a 6-foot chain link fence in a matter of seconds, and I mean seconds," Sims said. "And we are teaching him with picture cards. If he wants something, he flips though a book and shows me what he wants.
"Sometimes, you have to be a mind reader, but I'm getting pretty good at that."
Bentley attends pre-kindergarten class at Southside Center in Crestview, his mother said.
Initially, it was difficult enrolling him there.
"I was really nervous about sending him to school — how could I send my son away every day and he can't tell me anything, good or bad," Sims said. "But it has been the best thing for him. I love them there."
As time goes by, and as Sims finds resources like Apraxia-kids.org, which offers information and support, she's getting used to everything.
"I've never heard of CAS until last year," she said. "Who would have thought it had a day (dedicated to awareness?)"
Despite the struggles, which include regular doctor's appointments and speech therapy sessions, those resources have been invaluable, she said.
And now, she's coming around to the idea of CAS.
"It's getting easier for me, too," Sims said.
MORE INFORMATION
Learn more about childhood apraxia of speech at http://www.asha.org/public/speech/disorders/ChildhoodApraxia/.
Email News Bulletin Editor Thomas Boni, follow him on Twitter or call 850-682-6524.
This article originally appeared on Crestview News Bulletin: 'NOT ONE WORD': Baker mom raises awareness for children's speech disorder