Kekoa's Journey With Childhood Apraxia of Speech: I Want To Be Your Friend

Thursday, July 14, 2011

I Want To Be Your Friend

Every year CASANA does a conference for parents of children with Apraxia, Speech and Language Pathologists, professionals, educators, and anyone else who may want to attend. They put on an intensive three day conference with different workshops, panels and speakers from everyone who work in the field, to having Nancy Kaufman (developer of the Kaufman Praxis Treatment Method, which is currently being used with Koa) speak.

This year the conference took place in San Diego, which is literally only an hour from our home. Martin and I considered heavily on attending, but with finances, and really, Koa and Malia just not being ready to be away from us for 4 days, we decided that this year couldn't be our year to attend.

Luckily through modern technology, CASANA had posted a few videos from the conference for us parents who couldn't make it. That way we could benefit still from what was shown and sort of keep us in the loop.

One of my favorite videos is from their opening keynote speaker where they talk about a book titled "I Want To Be Your Friend." This book was written by a mother, whose daughter has CAS. She wrote it so that those who work with her daughter, in the schools and around, could know a little bit more about her daughter's condition, in the hopes that this would explain a bit more.

The book was read by two teenage kids who also have CAS. I feel that it was a great idea to have them read this aloud because it allowed us parents to see that here were two well adjusted young adults, living with the condition and able to function in everyday life with the disorder.

Between the two teenagers, and seeing that there was plenty of hope for Kekoa, and listening to the words of this book, once again I was brought to tears. But most importantly I was floored. I loved seeing how these two young adults, brought themselves to this daunting task of not only getting in front of hundreds of strangers who were to be fixated on them, and listening quite intently on their every sound, but they did it knowing that there could be a possibility that their disability would make it harder for them to complete that task, yet they did it with such grace and composure. Already, thats a hard thing to do, get up and speak publicly. But they did it beautifully. :)

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Definition of Apraxia per CASANA

Childhood Apraxia of Speech is a neurological motor speech disorder. 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. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

The act of speech begins with an intention to communicate. Next, an idea forms, outlining what the speaker wants to say. The words for the desired message are put in the correct order, using the correct grammar. Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together. All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate.

The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.