When Portsmouth resident Kendra
Jenkins’ son, Talen, couldn’t move his mouth properly to blow out his birthday
candles on his second birthday she knew something was wrong.
Jenkins was heartbroken when,
after six months of searching for an answer, her son was diagnosed with a
condition called Childhood Apraxia of Speech (CAS). But like any good mother,
she would not let this overwhelming prognosis keep her from getting Talen the
treatment he so desperately needed. But Talen’s treatments had very limited
coverage under their insurance. When he was diagnosed, Talen could only speak
ten words. “He couldn’t even pucker his lips to give you a kiss,” the mother
said.
CAS is a motor speech disorder
that becomes apparent as a child is leaning to speak. The disorder effects how
one’s brain communicates with the muscles involved in speech, making it
difficult for an affected child to plan and produce the precise, highly refined
and specific series of movements of the tongue, lips, jaw, and palate that are
necessary for intelligible speech.
Jenkins gained comfort and
determination by volunteering for the non-profit group Childhood Apraxia of
Speech Association of America (CASANA). They helped her to get Talen into the
right programs, and connected to other Rhode Island families - 50 that she
knows of - going through the same struggle. Together they have made great
strides in increasing awareness of this rare condition (approximately 1-2 per
1,000 kids affected), and last year marked the first official Apraxia Awareness
Day, which takes place on May 14.
During a Town Council meeting
Monday night, the town of Middletown unanimously voted to proclaim May 14, as
Apraxia Awareness Day for the town. This was in response to a letter written to
the council by Jenkins. She wrote a similar letter to the Rhode Island Governor
Lincoln Chaffee, who on May 14, will sign off on a proclamation for the State
of Rhode Island to recognize the day as well. A group of Rhode Island families
affected by CAS will travel to the State House to meet the governor and witness
the signing.
“I am so proud of this
accomplishment, and I would like to bring more awareness to our local
communities,” Jenkins said.
On Sunday September 14, 2014 at 9
a.m. the Walk for Children with Apraxia of Speech will be held at Colt State
Park in Bristol. A one-mile walk within the park will be followed by other
activities such as face painting, music, and raffles.
Jenkis said one of the biggest
problems with CAS is that the general public, as well as doctors are unaware or
know very little about the condition. According to Jenkins, CAS is often
misdiagnosed as autism because the child cannot speak, and sometimes is not
properly diagnosed until the age of five.
Jenkins also said CAS requires
specific one-on-one treatment and intense speech, physical, and occupational
therapy. She said that her insurance currently pays out on 24 speech therapy
visits per year. “We go through those visits in about eight weeks,” said
Jenkins.
In 2008, CASANA began funding
pilot research projects to make sure that kids with (CAS) can be properly
identified, to figure out which treatment methods are most effective, and to
learn more about the longitudinal life-span of (CAS), such as what percentage
of children – with appropriate help – end up going to college, and holding
jobs. Their work has lead to more published journal articles on treatments, and
has enabled researchers to go to the National Institute on Deafness and
Communication Disorders to fund larger projects, which include CAS.
“Not all insurance companies are
the same,” said CASANA founder Sharon Gretz. “Some cover it, some cover speech
therapy, but not enough of it, and some don’t cover it at all. We support
families by aiding when appealing denials to insurance companies by providing
materials and information to support their efforts.”
Over the past year, Talen has
attended seven speech therapy sessions a week, four at Mellville Elementary in
Portsmouth, and three at Alphabet Soup in North Kingstown where he receives
PROMPT therapy, a technique that involves restructuring oral muscular phonetic
targets. This means that the therapists physically manipulate the oral muscles
by pressing underneath the chin, around the nose, cheeks, and other areas to
help the child feel the muscles needed to make specific sounds. “The process is
very invasive, but Talen has grown to love what they help him accomplish,”
Jenkins said.
With proper treatment Talen has
gone from being able to speak 10 words to an impressive 60, and now has a vowel
accuracy rate of 70 percent, up from 10 percent when he started. Perhaps the
most heartwarming aspect of his treatment however is that on his fourth
birthday Talen was able to blow out all his birthday candles on his own.
Councilor Bruce Long thanked
Jenkins for her hard work and recalled when insurance companies were reluctant
to cover services for autism. He said after people pushed hard to raise
awareness, legislation was eventually passed mandating insurance companies to
recognize and coverer the disorder.
“That’s why were here,” said
Jenkins and continued, “The more people know about Apraxia, the more cases can
be diagnosed sufficiently.”
For more information on log onto www.apraxia-kids.org
No comments:
Post a Comment