Mason was born in August of 2017. A big 8.14 lb baby with a head full of black hair and chunky cheeks. He was typically developing and hit all his milestones on time. He cooed, imitated sounds, laughed and sang just like any other baby.

Around a year and a half, we noticed his speech started to regress. Words he could once say and imitate were no longer present in his vocabulary. We brought it up to his pediatrician and were told they would work on getting a referral to Tennessee’s Early Intervention Services. Months went by and we didn’t hear anything else about it. During this time, we moved and switched pediatricians. When Mason was 2.5 years old, we brought it up to his new doctor. She agreed that his vocabulary was very delayed as he only had 8-10, two to three letter words at this point. We were contacted by TEIS and placed with an early interventionist. This seemed like a double-edged sword. We were grateful to finally have someone to help us, but it was right in the middle of Covid, and sessions were only being done online. If you’ve never tried to get a 2.5-year-old to do a 30-minute speech session online, let me tell you…it’s not easy. To make things even more interesting, he was only allowed to receive services for 6 months before he aged out at 3.

While we couldn’t get a ton of speech therapy accomplished, other great things did come from working with TEIS! They helped us get Mason registered for early intervention PreK through our school system. As Mason entered early PreK, so started our journey with IEP’s, diagnoses, testing, and observations. At this point in time, we had no diagnosis, and his IEP labeled him as developmentally delayed. He was a mystery to everyone because his receptive language skills were far better than his expressive language skills. He started getting speech services twice a week in school as well as speech services twice a week through a clinic. With 4 speech sessions a week we hoped to see progress. We learned signs for words that were pertinent to his daily life, we tried AAC apps and modified them especially for him. We repeated words at home hoping he would be able to imitate but he still struggled.

When Mason turned three, we decided to seek further help and reached out to a developmental pediatrician. Along with his speech difficulties, Mason always had other little quirks. He likes to play a certain way with an idea in his mind of how things should go, he would pick out certain colors in his food and refuse to eat them, he doesn’t love bright lights or loud noises. I started thinking it may be possible he had ASD (autism spectrum disorder). The developmental pediatrician observed him several times, asked me lots of questions, and agreed that Mason was a mystery. Eventually he said “he has a lot of characteristics that align with ASD but also quite a few that don’t. If you want a diagnosis, I’ll give you one but I’m not 100% sure that’s all we’re seeing here.” As a mom, that’s a lot to take in and consider. His dad and I agreed to hold off on an Autism diagnosis in case there was a chance there was something else going on. We were afraid he would receive an incorrect diagnosis, and we would never know or be able to help him to our fullest capacity.

Fast forward to January of 2022. We had an SLP we loved and had been working with Mason since 2020. One day after his speech appointment she came out and said “hey, we did his evaluation today to update his goals and I think I messed up.” She continued saying she didn’t know how she didn’t see it before now but because of his articulation, inconsistent errors, inappropriate prosody, vowel distortions, and other characteristics she believed he had apraxia of speech.

I had never heard of apraxia before, and I immediately went home and started researching. I read about it, I read reports on it, I watched videos of other children with it and for the first time I saw and heard other kids who sounded like Mason. I ordered the New to Apraxia folder for parents from the Apraxia Kids site and tried to learn all I could. We were referred to a Pediatric Neurologist a couple hours away from where we lived. After speaking to us and observing Mason, she also agreed it looked like Apraxia! We finally had our correct diagnosis and could pivot the therapy sessions to a motor planning approach!!!

I then made it my mission to educate anyone who would listen. My friends, family, Mason’s school and teachers, people in our community, anyone! I even reached out to our mayor and was able to have him sign a proclamation at our city council meeting recognizing May 14th as Apraxia Awareness Day in our city! In 2023, his PreK class held an Apraxia Awareness Day in which his teachers and classmates wore blue and read one of Jordan LeVan’s books about Apraxia.

As his PreK chapter came to a close, and it was time to start Kindergarten, we all agreed he needed to be in a typical Kindergarten class. He was at a new school, so it was time again to educate the administration and his teachers about Apraxia. I came prepared with FAQ handouts, helpful websites, letters from his therapists and doctors, and tips we accumulated along the way. We were blessed with the best principal and teacher we could ever ask for! During Kindergarten Mason made so much progress! He could verbalize his wants and needs even when I wasn’t there. He made new friends and started playing with them instead of just beside them. He could tell me about what he did at school and share the highlights of his day. Things we, at one point, didn’t know if he would ever be able to do. At the end of the school year his guidance counselor and teachers worked together to hold an Apraxia Awareness Day with his new friends! He was so excited to see everyone wearing blue for him!

As the summer approached, we wanted to continue spreading awareness. I went door to door to our downtown businesses asking them to help spread awareness by wearing blue, featuring a blue dessert, or allowing us to put donation jars in their shop. Our community showed up! They promoted, made videos, made ice cream and fudge and cookies, signature drinks, and all the things in between. Our local news station was so interested in this awareness day that had our city turned blue that they asked me and another local mom to do a news interview! This allowed me to do exactly what we set out to…spread awareness and help be Mason’s voice while he worked on finding his own. Mason is now in first grade and thriving! He has started reading books, he continues to receive speech therapy at school and at the clinic. He can speak in full sentences, express his wants and needs, and argue just as well as his siblings!

In the last year he has also received a few other diagnoses that help explain those quirks of his! Sensory processing disorder, dysgraphia, and dyspraxia were all added to his list. While it has been a long road full of uncertainty and trials, Mason’s determination and spunky attitude has helped us learn to go with the flow, expect the unexpected, be patient, and never give up!

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