Sharon Gretz is a mother of an Apraxia Star and is also the founder of Apraxia Kids! She served as our Executive Director for 16 years. In this blog post we take a look back 25 years ago to see what inspired Sharon to take action.

In your own words, what is the greatest difference between what getting an apraxia diagnosis felt like when your child was diagnosed to now?

When my son was diagnosed with apraxia of speech, I was told that with intensive, appropriate speech therapy he had a good chance of developing “some” intelligible speech. It was a shocker. All I heard was the word “some”. I was always an “information” person. Even then. So, I started trying to find information, but sadly there was almost none. There were a few research papers (I mean, only several) that a family member was able to send me from a University library. I felt very alone. I could not imagine what the future would bring. I felt desperate to help my child. Fast forward…

The difference between then and now? Immeasurable. Like night and day. I want you to imagine it. Back then…

• There was no website – none.
• There was no family support (neither in person nor online).
• There were no role models of what a child with this diagnosis might be like as an adult.
• Families were not connected. If your child was even lucky enough to receive the right diagnosis? You knew no one who could relate to your family or child’s situation. And you had no way to find out if there even was anyone else.
• Speech-language pathologists were not connected. If an SLP even had a diagnosis of apraxia in children on their radar, they had no experience diagnosing it or treating it.
• Students who studied to be speech-language pathologists had no course work nor clinical work that would prepare them for a student or patient with the diagnosis of childhood apraxia of speech.
• Researchers were not connected. In all honesty, there were, like, 2 researchers in the whole world who even would agree there was such a thing in children.
• There was a pure lack of research, perhaps several papers only.
• There were just several published papers that referenced an obscure diagnosis called “developmental apraxia of speech” or developmental verbal dyspraxia.
• If a child was diagnosed with developmental apraxia of speech, insurance companies rejected paying for speech therapy because the term “developmental” implied the child would outgrow the problem.
• There was no recognition of apraxia of speech in children as an actual speech disorder from the top professional organization in the country (American Speech Language Hearing Association or ASHA). In other words, there was no agreement that it was even “real” as a specific class of speech disorder requiring diagnosis and specific treatment.
• There was no awareness day or month
• There was no recognition of other conditions or disabilities that might co-occur with apraxia of speech in children

I could go on and on. It WAS like living in the dark of night and is NOW like having day light.

Today, you have amazing resources available to your family from Apraxia Kids – online, in person, and as print material. You have family support with all the many support groups that Apraxia Kids oversees. Your children have role models – adults who grew up with apraxia of speech and benefitted from the new interest in the diagnosis. You and your children actually have the opportunity to know other “real” parents and children in your communities, especially if you take part in a Walk for Apraxia.

Your child’s speech-language pathologist learned about CAS when they were in graduate school. They learned about it because seven years after the organization was started, the American Speech and Hearing Association (ASHA) agreed that the disorder actually exists in children. They agreed it was real because of researchers, clinicians, and an Apraxia Kids organization called together to come to consensus. Your insurance company is more likely to cover speech therapy for your child. Your school is more likely to know that they need to provide appropriate services for your child.  Private SLPs even specialize in diagnosing and treating childhood apraxia of speech. This all came about through Apraxia Kids’ existence and leadership.

We know more about Childhood Apraxia of Speech because research studies have flourished. They have flourished because of the impact of the Apraxia Kids organization and its partnership with the top researchers and up and coming researchers. The organization has advocated for research and has also funded significant research. Apraxia Kids has financially invested in research because research is critical for learning about the children, the treatment needed, and the causes underlying CAS.  The graph below shows you the growth in the volume of research papers from when Apraxia Kids started until today.

I could not be happier or prouder to know that Apraxia Kids continues to change the world for our kids with apraxia. Be sure you treasure this organization and its mission if you love someone with apraxia.  If you can, be sure you support its efforts and assure that there will ALWAYS be this amazing resource for a child like yours and for a family like yours. And don’t ever think that what you personally contribute to the organization is insignificant (financially through donations, through the gift of your volunteer time, or both).  What you personally do now matters too! It matters just like it did 25 years ago when I looked in the eyes of my precious three-year-old son and decided to start an organization, hoping to make a difference. You make that difference now. I know you will!

Watch Sharon speak at our 2024 National Conference: https://youtu.be/SzcXhmV1Yf0?si=mz4dUKZrhjfyvC7g