CRESTVIEW — Childhood apraxia of speech is so little known that Jennifer Boswell hands cards to people who look askance at her daughter. They state, “My child has apraxia speech disorder. Please be patient.”
Summer, 3, has a neurological motor speech disorder that affects a child’s ability to form words. She knows what she wants to say, but her brain has difficulty coordinating necessary muscle movements.
“For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech,” the Childhood Apraxia of Speech Association of North America, or CASANA's, website states.
When Summer is frustrated because she can’t communicate with someone, “she has meltdowns,” Jennifer Boswell said. “She’s very vocal. She’s not very intelligible, but she’s loud.” That can lead to misunderstandings. “… I got kicked out of my own doctor’s office in Niceville because my kid was too loud," Jennifer said. "There’s not much awareness around here."
The Crestview mom said she realized something was amiss with Summer last year. “She seemed like a happy kid but it’s hard to explain,” Jennifer said. “After she was around 2, I started noticing she didn’t seem to speak as well as her peers. She was only saying one or two words at a time. She was not progressing.”
A web search for “speech delays in toddlers” led Jennifer to videos on YouTube.com. “I went on YouTube and was blown away about how much the children were like her; the way they sounded and the way their lips moved,” she said.
Summer now receives intensive speech therapy twice a week through the Florida Department of Health's Early Steps program. The state-funded initiative helps families with children up to 3 years old with developmental delays.
“Her speech therapy consists of exercises for the mouth; trying to relay brain signals to the mouth to correctly enunciate words properly,” her dad, Joshua Boswell, said.
Summer's not the only one progressing; so is her mom.
“I’m learning, too,” Jennifer said. “And I’m a volunteer with CASANA now.” She is planning the2015 Emerald Coast Walk for Children with Apraxia of Speech. Proceeds from event — set for Oct. 10 at Henderson Beach State Park in Destin — will benefit the non-profit organization.
Jennifer said she hopes the event will raise awareness in Northwest Florida, and perhaps people — like her Niceville doctor's office — will be more understanding when Summer has a tantrum.
After all, "This is something that is going to be ongoing for a long time,” Joshua said. “Apraxia is something that affects you the rest of your life."
Jennifer understands a long journey lies ahead, but she believes there is hope for children with apraxia when the disorder is identified early.
“They just need therapy,” she said. "That is good news for Summer, because I was so worried when I heard (about) it.”
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WANT TO GO?
WHAT: 2015 Emerald Coast Walk for Children with Apraxia of Speech
WHEN: Registration begins 8:30 a.m.; walk begins 9 a.m., Oct. 10
WHERE: Henderson Beach State Park, 17000 Emerald Coast Parkway,Destin
CONTACT: Learn more at http://bit.ly/1M6xsNU, email emeraldcoastlife@gmail.com or call 398-6758 to register, volunteer, sponsor or provide entertainment for the event.
Email News Bulletin Staff Writer Brian Hughes, follow him on Twitter or call 850-682-6524.
This article originally appeared on Crestview News Bulletin: Girl's rare speech disorder drives Crestview mom to raise awareness