CASANA celebrates the first ever Apraxia Awareness Day Wednesday
May 14, 2014 | 706 views | 0 0 comments | 8 8 recommendations | email to a friend | print
David Massey of Metropolis has been diagnosed with Apraxia.
David Massey of Metropolis has been diagnosed with Apraxia.
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May 14 is Apraxia Awareness Day, but for Amanda Massey, of Metropolis, she is already well aware of the condition because her son, David Massey, was diagnosed with it in August 2013.

David, who will be 3 in June, is like other typical 3-year-old boys, according to Massey, only the Apraxia affects his speech and to some extent his motor skills.

David was born at 35 weeks and was only 4 pounds, 10 ounces. So when Massey and her husband, Randle, noticed David was not developing certain speech and motor skills, they thought it was a combination of the fact David was a boy and born prematurely. At 15 months, they were able to get David entered into an early intervention program.

David receives speech therapy twice a week along with physical and occupational therapy once a week through early intervention.

Last year, the Masseys took David to Vanderbilt University in Tennessee. There, David was diagnosed with Apraxia, a neurologically based condition affecting David’s speech. Massey describes the condition as a “road block.”

As thoughts travel from David’s brain, they are “blocked,” and he is unable to get his words out. But, she said David knows about three dozens signs. “Sign language has been wonderful,” said Massey. In addition to the signs, David can also speak about a half dozen words clearly.

The Childhood Apraxia of Speech Association of North America (CASANA) invites communities worldwide to become aware and educated about the needs, challenges, and abilities of children affected by Apraxia.

Apraxia is among the most severe speech and communication problems in children. Affected children have difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary to produce clear, intelligible speech.

“Families have truly longed to have a day recognizing the struggles faced by their children. There are many misconceptions about children who speak little or do not speak well. We aim to improve the public awareness so that accurate information is shared and understood,” says Sharon Gretz, executive director of CASANA.

Proclamations and resolutions are being issued by state level legislative bodies, and CASANA is again pursuing the placement of a statement acknowledging Apraxia Awareness Day in the Congressional Record this year.

CASANA will be using social media sites such as Facebook, Twitter and YouTube and blogs to mobilize families, friends and professionals to help educate and raise apraxia awareness. An online Apraxia Awareness Day store will be set up to purchase T-shirts, buttons and other awareness items.

The second annual Apraxia Awareness Day will include an online apraxia quiz, Twitter chat, contests and a question- and-answer webinar for families and caregivers.

The Masseys recently took David to St. Louis to a developmental pediatrician to get a second opinion.

While the diagnosis was the same, Massey said David continues to make progress, as he knows his colors and animals.

David also sees an ear, nose throat doctor who believes the flap in the back of David’s throat may be causing some problems. In June, David will have a camera put down his nose to see if this is true.

David is the grandson of Richard and Lisa Wedeking, Juanita Wedeking, Rose Massey and the late David Massey Jr. and the great-grandson of Evan “Jerry” and Geneva Pennington.

For more information on Apraxia Awareness Day visit the established Facebook page: http://tinyurl.com/lm5g6mg or the webpage of ideas to commemorate Apraxia Awareness Day: http://www.apraxia-kids.org/apraxia-awareness-day-2014/

CASANA is a 501(c)3 non-profit organization based in Pittsburgh, Pa. dedicated to improving the system of support in the lives of children with apraxia of speech so each child is afforded their best opportunity to develop speech and full communication. CASANA was founded in 2000 and is the only national nonprofit dedicated to those with childhood apraxia of speech (CAS) and their families. The organization raises awareness; provides support, information and education; and funds and supports CAS research.

Learn more about CASANA and apraxia at Apraxia-KIDS.org.
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