Jake's Journey with Apraxia

by Amber, Contributing Writer

There are many things to be grateful for in life, and it seems people take the month of November to post these things daily on social media. I always enjoy reading the posts by family and friends. It’s nice to get a glimpse into the things in their life that bring them joy, beyond the obvious. Coming up with 30 days of gratitude pushes a person past the typical “I’m thankful for family, friends, food, shelter, employment, and health.”

I thought I’d take this time to post a few things I’m grateful for in regards to people and situations brought into my life because of apraxia. When I first heard the term Childhood Apraxia of Speech, I was grateful we weren’t dealing with a serious or life threatening illness, but my heart still hurt knowing my children would struggle. It was hard to be grateful in the beginning. Here I am, almost three years after Cason’s diagnosis and almost a year after Callen’s diagnosis, and I can now see many things to be grateful for when it comes to apraxia.

There are the obvious things for which I am grateful, like family and friends’ support, great speech therapists, and a wonderful developmental pediatrician. For this post, I wanted to touch on a few other things.

I am grateful for the support group I have found online. I have met so many wonderful parents through their personal blogs about apraxia and through Facebook support groups. Their kind words, experiences, and knowledge have been so helpful and encouraging over the years. Nobody I knew personally had ever dealt with apraxia, so finding people online that were experiencing the exact same thing, or had already been through it, was very comforting.

That leads me to another thing for which I am grateful, being able to give support and encouragement to other parents. I have enjoyed sharing Cason and Callen’s experiences with other parents. I enjoy sharing information, articles, blogs, and resources. I remember how overwhelming it was when I was first trying to sort through all of the information online. One of my personal goals is to always pay it forward and help other parents in any way I can when it comes to apraxia.

I am also grateful for the life lessons apraxia is teaching my daughter. Camryn is several years older than Cason and Callen. When the Cason first started going to speech, we didn’t really talk about it with Camryn. She was in public school during the appointment times, so I don’t even think she was aware of his appointments. As Cason got a little older, she tried correcting his speech a lot, and that’s when we explained to her a little bit more about apraxia. We gave her a brief, simple definition that she could understand and be able to explain to others, like her friends.

However, I started homeschooling Camryn a year ago, and she started going with us to speech appointments. She started asking a lot more questions about speech. She’s been so helpful and patient with the boys. She helps them come up with approximations when they have a hard time with a particular word. Camryn is encouraging and their own personal cheerleader when they have successes.

Of course, I think these lessons would have been learned regardless of whether the boys had speech issues. However, I may have taken them for granted or not acknowledged them in the same way.

I am also grateful for the work ethic I believe apraxia is instilling in Cason and Callen. Work ethic seems like such a grown up term for such little boys, but I wasn’t sure of another way to put it. I have watched the boys go to speech three days a week and put in thirty minutes of work, since the age of 17 months.

Yes, it may look like play to others, but they are truly working their brains to get each sound, syllable shape, and word. It doesn’t come naturally and it can be a struggle. Even with the struggle, they work hard and don’t give up. That’s not to say they haven’t had rough sessions, because they have. They are typical kids, after all. For Callen, it took longer for him to cooperate/participate vocally in speech sessions. Now, he works just as hard as Cason and complies with what is being asked of him during a session.

The persistence, determination, and work ethic they are developing are inspiring to me. It carries on beyond speech sessions. At home, they have the same determination and persistence each time I have them mimic a word correctly or have them repeat a phrase.

I am grateful for the way apraxia has opened my heart. I’ve learned to appreciate the little things even more. When Camryn was young, she actually talked early for her age. I can remember her first words, after that, I don’t really remember her evolving speech. It just happened on its own, and I didn’t give it a whole lot of thought.

With the boys, we celebrate the small things and try not to take it for granted. Every day, Callen is saying new words approximations, and I celebrate each new word. I don’t necessarily say something to anyone else, but in my mind I say “Yes!” Cason has been making longer phrases, making up his own jokes, and even tells stories that are several sentences long.

Then there is Caden, who is just about eleven months old. I have been celebrating each sound he makes. Cason and Callen didn’t babble much as infants, so I have a higher appreciation hearing Caden babble and repeat sounds back to me.

So while I’m not thankful that my sons deal with apraxia, I am very grateful for people and situations that have been brought into our lives because of apraxia.

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.