Jake's Journey with Apraxia

And the Friends We Met Along the Way

by Amber, Contributing Writer

Last Thursday was Apraxia Awareness Day. It was awesome to see all of the support being shown for our children. My own children no longer have a diagnosis of apraxia, but my Facebook news feed still filled with pictures of family and friends wearing blue and white to continue to show support for all children with apraxia. It was an overwhelming feeling to see that we still have such a great support system, even without having the diagnosis anymore.

Finding a great support system is so important when a family member is given any type of diagnosis. When Cason first received an apraxia diagnosis several years ago, I was able to find support in many different ways.

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There are family and friends that I can always count on for support. They don’t always completely understand the situation, but they understand that support and encouragement is needed. They send positive messages and celebrate the small steps as well as the big steps. They are a listening ear and a shoulder to cry on.

We were very fortunate to find a supportive Developmental Pediatrician that was very knowledgeable in apraxia and knew how to get our insurance to give the boys the amount/type of therapy they needed. Anytime we received a denial, we knew we could count on him to get it reversed. We only saw our Developmental Pediatrician once a year, but we contacted him and his office several times throughout the year. They always went above and beyond to help us out. Not all parents I know have that time of support from the medical field, so I was always grateful.

Our speech therapists were supportive on a personal level. They were truly invested in our kids and wanted the best for them. We could always count on them for encouragement and understanding. There were a few occasions when I broke down in the speech office and cried, and they knew what I was feeling and had tears in their own eyes. We moved across the country several months ago, and our previous therapists still show an interested in the boys and check in on them via email.

Which brings me to another support system that has been huge in my life….the virtual friends I have made along the way. I often think how lost I would have been in the beginning of Cason’s diagnosis if I didn’t have the internet. I’m a stay at home mom and a military wife. I was still new to the area we were living in and had made only a few close friends when we first received an apraxia diagnosis. Nobody I knew personally had experience with apraxia.

I did what most of us do nowadays; I headed to the internet. The world wide web definitely has its negatives, but there are also so many positives. Not only can we gain information, but we can also meet others that have/are experiencing the same things.
I joined a Facebook group set up by CASANA for parents of children with apraxia. Post after post was from parents that had the same concerns, questions, and worries that I was facing. The comments on those posts were from parents that had actually “been there, done that.” So it wasn’t just someone trying to understand. It was people that actual did understand.

I also read several blogs written by parents of children with apraxia. I watched YouTube videos posted by other parents. The videos were helpful for me to see what therapy might work for my own child.

The parents I met online became a virtual support group. They were living the same situations or had already gone through it. They “got it” to a degree that my other support systems didn’t because it was their reality also.

Even though Cason and Callen no longer have an apraxia diagnosis, I still have the same support systems. That was made obvious to me last week as my news feed had picture after picture of people wearing blue and white.

We will always be grateful for the support we have been shown, and we will continue to show our support towards others. Our boys have found their voice, and our family will always participate in Apraxia Awareness Day because every child deserves a voice.

Bio: Amber lives in South Carolina with her husband and four children. She has two sons diagnosed with apraxia of speech and sensory processing disorder. Her older son also has hypotonia. She is a stay at home, homeschooling mom who taught public school for eight years. In her free time, she likes to read and sew.

3 thoughts on “Apraxia Support

  1. sheilatufano says:

    I love that despite the fact that your boys were released of their diagnosis, you continue to be involved in the community. Some would try to leave that time in their lives behind them, but I thank you for sticking around 🙂

    1. Amber says:

      I replied to your message, but I accidentally posted it as a comment rather than I reply. My message to you is below… 🙂

  2. Amber says:

    Thank you for sharing that with me. Honestly, I had a brief moment when I wanted to leave it behind. Right after my youngest was diagnosed with a severe peanut allergy (about 6 weeks after the other boys were released of the apraxia diagnosis), I wanted to “walk away” from apraxia. But I realized that’s not who I want to be. I can’t just walk away from something that made such an impact in our lives; positive or negative. So I quickly went right back to advocating and being a voice for children that have apraxia. For you to say this truly touches my heart and reaffirms my choice. More than you can realize. ❤ Thank you!

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