Jake's Journey with Apraxia

by Jayme, Contributing Writer

Hi everyone : ) So happy to be here and connecting with other families also journeying through CAS. I am a happy and blessed mother to four kids (4, 3, almost 2 and 7 months). Our days are busy, crazy, happy, loud and most importantly beautiful. This is the story of our only son, the sweetest little boy you’ll ever meet.

Tyson was born December 28, 2011 and was 10 lbs and 4 oz. He was the most beautiful little boy with thick dark hair and cheeks to die for. Tyson was sitting at 5 months and walking by 9 months. He loved to jump, run, dance and be silly. Before he was one he made a few sounds and even said mama!

Around 15-16 months, he wasn’t saying anything (not even the few words/sounds he had said before) and I began to get worried. Our firstborn Payton was talking by 16 months, so I knew he should be able to say something, anything…

Tyson tried to speak, but no words were coming out. He attempted to communicate with his version of talking, which were grunts and random sounds. I would try and get him to imitate words, but he just couldn’t get the sounds to come out. He was so frustrated that no one seemed to understand him.

At Tyson’s 18th month doctor’s appointment I mentioned to the doctor that I was worried about his speech development. They said not to worry, boys speak later, he was still so young etc. and we could discuss this again at his 2 yr appt. I tried to take that in, but something in me knew it wasn’t right.

I felt horrible and immediately turned to the internet (haha) for help. I found many other parents going through similar situations and came to the conclusion that we needed to contact the states Early Intervention Program (EIP) and visit an Ears, Nose and Throat Doctor (ENT).

After his EIP evaluations, it was determined Tyson did not actually qualify for the program by his scores, but because of the complete lack of speech, he was able to get in. We had an amazing therapist coming to work with Tyson once a week and also counsel our family on skills that would help Tyson.

At Tyson’s ENT appointment, they found quite a bit of fluid in his ears which probably contributed to his inability to mimic our words. It was determined that he would need ear drainage tubes implanted to clear the fluid out.

It was an outpatient surgery for his ear tubes, which went great and he passed all of his hearing tests during the follow-up appts. Great, “now we know” with certainty that he can hear us, but why couldn’t he speak?

A few months passed (with no huge improvements) and after another speech evaluation we heard the term apraxia for the first time. Neither Billy nor I had ever heard of apraxia. After being told not to research it online, I immediately researched it online (lol). I was definitely not prepared for what I read.

I was devastated. Our poor sweet boy was literally living in a speech prison. Here he understood everything, with complete thoughts in his head, but could not verbally communicate them to us. I also found out that apraxia is not a developmental disorder. Tyson would not simply outgrow CAS, he would need intensive therapy to speak one day.

After hearing/learning of apraxia, we immediately got started helping Tyson. After a few months with a local speech therapist and endless hours of research we found a well known and phenomenal facility that focused on apraxia. It was called Foundations Developmental House, owned by Lynn Carahaly. She developed a program called the Speech-EZ Apraxia Program that was doing amazing things for so many children. We contacted them and set up an appointment to visit. We immediately felt at home and knew this was the place for Tyson. And oh yeah, it was a two-hour round trip from where were living at the time.

 As destiny would have it, Billy and I were already shopping for a new house and after learning about the Foundations Developmental House, we knew we needed to move as close as possible so that we could get Tyson the help he needed. It was a big move and a huge step, BUT it was without a doubt the best decision we’ve made as a family.

After moving we started speech therapy before we were even unpacked! Tyson started going 3 mornings a week, an hour each day. Tyson’s SLP Anna-Alyse, was literally sent from God and I can’t even begin to explain how grateful I am for her.

The first few weeks were a HUGE challenge. Tyson didn’t want us to leave the room and definitely wanted no part in sitting at a table for intensive therapy. After a while though, he quickly adjusted and started stopping us from leaving the lobby. After a few more weeks, he started sitting down at the table and getting work done.

Presently Tyson continues speech therapy 3-4 days a week and has grown more than I could imagine. He can say all sounds, a few words and his word imitating is getting stronger by the day. Hearing him call me mama again after over a year was a moment I will never forget.

There are very tough days and moments I want to cry for Tyson, but I remind myself that he is perfect. Our hope is that in the next few years he will find his voice and start kindergarten with typical speech. I can only hope he knows that we hear him, we get him, and we love him. I am so proud of him and of the strength he possesses. He is our warrior man, our “Champion” and I can’t wait to hear him talk my ear off one day.