Apraxia Walker Spotlight: Team Power – Why I Walk

Why I Will Walk for Children with Apraxia of Speech on September 19th.

by Linda Power

Many kids get medals in school and on sports teams as recognition of their abilities relative to peers. More subtle, but no less deserving, are the achievements made by our children with special needs. Such is the case with our 3 year old son Ashton, who was diagnosed with severe apraxia of speech last year.  Something as seemingly simple as speech doesn’t come easy to him.  It’s glaringly obvious every day how frustrated he is.  He wears in emotions on his sleeve.

This year has been a roller coaster for our family.  A few months ago, Ashton developed a severe stutter (common in apraxia) which took away the words that he had learned and regressed his speech into “Ada ada ada.”  We were terrified that his stutter, which progressed rapidly, would become permanent.  It was painful to hear and to watch him struggle every time he wanted to say something.  I received the ultimate gift on Mother’s Day when Ashton walked up to me with a huge smile, holding a card he’d made in speech therapy and fluently said, “Happy Modders Day Moddy.”  My eyes well up with tears just recalling that moment.  While his stutter is essentially gone, Ashton still has Apraxia of Speech and gets “tongue tied” when trying to talk.  His brain has trouble coordinating the muscles of his mouth to produce intelligible words.  He still has years of speech therapy ahead of him, which is specialized and evidence based courtesy of a wonderful non-profit organization called CASANA.  CASANA funds research and training, and helps educate the community about Apraxia.  CASANA even provides scholarships for selected Speech and Language Pathologists to attend training events so they can disseminate information to the community and provide the highest quality treatment to children such as Ashton.  We feel extremely fortunate that Ashton’s SLP Laura Smith was one of those selected to receive advanced training to become a CASANA recognized expert in Childhood Apraxia of Speech.

Whereas we, as parents, have Mother’s and Father’s Day to celebrate our hard work throughout the year, our kiddos with Apraxia, will have their day at the Apraxia Walk.  We will celebrate their accomplishments during the medal ceremony where each and every child with Apraxia will have their name called and proudly walk up and receive a medal.  Ashton, representing “Team Power” loved his and learned to say a new word that day, “Medal.”  To his older brother, he referred to it as “My medal.”

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The award ceremony is only one part of the wonderful day for kids.  Ashtunnamed (4)on’s 5 year old brother, Adam, also had a wonderful time.  They got to have their face painted, get to see a big red fire truck, get to walk (or hitch a ride on shoulders) around a beautiful lake with us, their supporters, all wearing Apraxia Awareness T-shirts.  For our children with Apraxia, they get to meet and play with other children who understand their struggle to communicate.  They get to see that they are not alone, and that they are supported in every direction they look.

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