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A Voice: My Connection to Apraxia

I don’t usually post personal topics on my business page, but I think I am going to start mixing some in now and then! I think it’s important to not only know my business, but to know a little more about me (Stephanie) too. I wanted to write about Apraxia.. do you know what this means? Have you ever heard of this before? I never did until about 6 1/2 years ago.

Walk for Apraxia

My niece Isabella and me at last year’s walk in Chicago.

Many haven’t, and that is why I want to talk about it here today.  In Wikipedia terms…  “Apraxia of speech (AOS) is a neurologic speech disorder that reflects an impaired capacity to plan or program sensorimotor commands necessary for directing movements that result in phonetically and prosodically normal speech.[7] It occurs in both children (childhood apraxia of speech) and adults (acquired apraxia of speech) who have (prior to the onset of apraxia) acquired some level of speaking ability. AOS affects an individual’s volitional speech and[8] is typically the result of a stroke, tumor, or other known neurological illness or injury. Apraxia may be accompanied by a language disorder called aphasia.  There are several types of Apraxia and AOS is just one of them.”

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I’m one lucky Auntie Bee!

Quoted from Casana website…”While most children almost miraculously learn to speak without effort, children with apraxia struggle mightily to accurately produce sounds, syllables and words. While their understanding of language is usually much better than their ability to express it, children with apraxia have difficulty planning and programming the movements which underlie speech. At the heart of it, speech is more than knowing what you want to say. Rapid and finely graded movements of speech structures (the lips, tongue, palate and jaw, etc.) occur which allow us to clearly articulate our ideas. But for children with apraxia, ideas are often stuck inside, unspoken or not understood, because of apraxia. Childhood Apraxia of Speech is considered rare among speech disorders in children and particularly challenging to overcome.” 

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Why does this specifically hit home for me?  My beautiful niece Isabella had been diagnosed with Apraxia at a very young age, under 2 years of age.  My sister (in medicine herself as a podiatric surgeon) and brother-in-law saw some signs very early on (luckily) that they were persistent with doctors on finding out what was going on in.  They knew something was not right in her development.  Many are misdiagnosed as having Autism since it is on a similar spectrum.  Over many years of battling insurance companies on being able to get the proper speech classes and therapy, thank goodness Isabella has come a long way in her journey.  She is now in first grade and one of my favorite things is just sitting, snuggling and listening to her talk.

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She has been able to come a long way through the help of her parents, family and teachers.  So glad there is an organization (Walk for Children with Apraxia of Speech) that is out there to help and support to give children a voice and help others understand.  The 8th Annual walk is coming up in Chicago on October 1st.  If you can’t attend, you can also help in supporting Team Fellino!

If you don’t know, I am also an avid UFC fan (previously training in Muay Thai) and one UFC fighter we all know very well, Ronda Rousey, also was diagnosed with Apraxia of Speech at a young age.  She talked about how it made her feel as a child in her book My Fight/Your Fight.

My hope is to help in continuing the education of what Apraxia is (as years ago I never knew myself) and maybe you know someone who is in this journey.  There is help out there, check out the Casana website for more information.

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