Happy Mother’s Day from Apraxia Kids! We are so lucky to have three talented and dedicated moms of Apraxia Stars on our staff. Read below to see how each staff member came to find Apraxia Kids and learn a little more about their journey with us.

April Black: Walk Manager and Apraxia Mom

I was facing one of the darkest times of my life when I found Apraxia Kids: coming to terms with my son’s apraxia diagnosis. Benji was born the last of 5 children. When he was born, my oldest child was 22 years old, so I had been around the parenting block for a while. Several of my children had been speech delayed so when I was told by a speech-language pathologist that she believed my 20-month-old son had something called “apraxia”, I just thought it was the fancy name for a delayed speech disorder and with therapy once a week, Benji would catch up to his peers by the time he went to preschool, no big deal.

After a year of making no progress, I would turn to Google for information about this thing called apraxia; something you are told to never do about any diagnosis. What I read was devastating and very scary. This was around Christmas 2018. I spent many days crying, feeling depressed and guilty. Was it my fault? Did I cause this? Was it the result of his traumatic birth? This was not what I imagined being a part of my beautiful child’s life! 

In my googling for information, I also came across an organization called Apraxia Kids. Wow! Here was an organization solely dedicated to helping children like my son. A glimmer of light touched the darkness that had been consuming me. Suddenly, I became aware that there were more people than just myself and my son’s speech therapist that knew not only what apraxia was but how to help my son. I have always referred to Apraxia Kids as a lifeline. At a time when I felt like I was drowning, they were a buoy for me to hold onto.

When I first learned of Apraxia Kids, I knew I wanted to work with the organization as an employee. Imagine how dashed I felt when I realized my first hurdle: you have to live in Pittsburgh. I lived in Ohio. Even if I lived local to the organization, there were literally a handful of people working for them. How could I ever be one of those people? I felt like there was a one in a million chance of that.

Fast forward to 2020…ah, the Covid year…suddenly that first hurdle wasn’t so big anymore as virtual employment became all the rage. And then one day in the late fall of 2022, Benji’s amazing speech therapist that I found on one of the Apraxia Kids support group pages, who had also become the sweetest of friends, messaged me to tell me that Apraxia Kids was looking to hire a Manager for their Walk program to work virtually from home. This was my chance and by some miracle, I’m living my dream! 

It’s crazy to think about the apraxia mom I was at the beginning of this journey compared to the apraxia mom I am today. It is my goal every day to bring the hope I found to other parents who are supporting children with apraxia diagnoses and to support all the professionals who are pouring themselves into the lives of our children.

Amy Salera: Community Engagement Manager and Apraxia Mom

In November 2016, our family finally had a word to use when speaking about my son’s speech delay… apraxia.  He was 4.5 years old and had already been receiving speech therapy for almost three years.  He had made some progress, but we, my spouse and I, knew we needed to take a deeper dive into the situation.  Why did we wait so long to investigate further?  The answer is simple, we already were taking him to speech therapy, working on speech at home, and he made some progress, so we thought our son was on the right path.  What triggered the further investigation?  His frustration level was so high that when he was trying to tell me something, he broke down and simply said, “I can’t know.” And so, our journey began.

After his diagnosis, I was looking for answers.  We never heard of “apraxia” before.  Thinking a few months of speech therapy would cure the problem, we kept feeling his diagnosis over and over each time we spoke to his SLP.  It took a while for us to understand this was a long journey, and I don’t believe we had a true visual until I kept researching and found Apraxia Kids (CASANA) online.  I continuously reviewed their website and followed them on Facebook, looking for the answers to all my questions.  Unfortunately, as I dug deeper, I learned how serious of a diagnosis this was and the Apraxia Kids website turned into my lifeline of hope.  

Later, in 2017, we attended our first Walk for Apraxia.  Once again, this fueled us with inspiration and a feeling of not being alone.

Apraxia Kids has impacted our lives by providing us the knowledge and resources to help our child.  Because of Apraxia Kids, we have been able to discuss concerns with doctors and his speech therapist with confidence, present materials to his teachers and school staff so they understand how apraxia affects him and what methods work best when interacting with him, and feel a sense of community.  Since his diagnosis, we have gone from clueless apraxia parents to knowing there is a place for him in the world, but he just needs a different approach to reach his goals. 

My advice to families who are just starting out on this journey has always been the same.  Upon diagnosis, allow time to process this new information and then start researching.  There are different evidence-based methods to treat a child with apraxia of speech, so it might take some trial and error before you find your fit.  As a parent or guardian, childhood apraxia of speech is frustrating, almost maddening; and can make you feel alone.  It is exhausting as you have to continuously educate people over and over again.  Then I remember, I’m just supporting my child the best I can, if I’m feeling this way, he surely has frustrations much greater than mine.  So, I’ve learned to give myself and my child grace.  He must learn, but he doesn’t need the best grades – progress is progress.  He must socialize, but he can take breaks to reenergize himself – a moment away from action can work wonders.  He must endure new experiences, but we can prepare prior – have discussions, practice, or ask for an early tour depending on the situation.  Mainly, families will need to learn how to think outside the box and that modifications are acceptable.  Don’t be afraid to speak up for your child.

Now we face the teenage years.  Although I continue to search for answers about my child’s future, I feel our experiences are relatable to others.  At times, my child’s journey from birth to now might be a representation of what another family is or will be going through.  I am happy to speak to families and offer a realistic view that things will be tough, but they will manage to get through.  I am privileged to take what I have learned and share it, especially when families are looking to raise awareness within their network or community.  I am grateful to be able to share Apraxia Kids with them and offer a sense of hope.

Before my spouse and I started a family, I had visions of what my future would be.  None of those visions included the woman, wife, and mother I am today.  I have my family to thank, for taking me down this path as they have introduced me to many different avenues I never considered.  I have the apraxia community to thank, for endlessly inspiring me to keep putting one foot in front of the other.  And I have Apraxia Kids to thank, for offering a sense of hope, focus, and clarity so my spouse and I can stay strong during the difficult times of our apraxia story.

Then I realize, this isn’t my story at all.  It’s the story of my Apraxia Star that has truly made an impact on the apraxia community.  I’m just his voice.

Loretta Coffin: Sponsorship Coordinator 

At 15 months old, my daughter Kalynn began displaying concerning behaviors like tongue thrashing, constant eye blinking, and fidgeting fingers and toes. She only said “Mama.” I brought up these issues at her 15-month well-visit, but her pediatrician dismissed my concerns.

Three months later at her 18-month appointment, Kalynn’s behaviors persisted. She was still only saying “Mama.” Again, the pediatrician dismissed my worries and advised me not to compare Kalynn to her older sister. I knew in my gut something was wrong, so I took matters into my own hands.

After countless late nights researching, I discovered Childhood Apraxia of Speech. Kalynn’s symptoms matched perfectly, down to the tic disorder we later confirmed. My research led me to two apraxia experts – Cari Ebhert and Dave Hammer. I called Dave, unsure if he would even return my call.

Within two hours, he phoned me back. Dave listened compassionately as I cried, he asked thoughtful questions, and offered guidance, never dismissive. “You know your daughter best – trust your instincts,” he said. Dave recommended an evaluation by a specialized SLP. Within two weeks, Kalynn received a suspected apraxia diagnosis and started therapy. In March 2019, she was formally diagnosed with Childhood Apraxia of Speech.

Now 7 years old, Kalynn’s journey continues, but we have the tools to overcome this challenge. If you’re new to apraxia, you must advocate for your child. Trust your gut, get any roadblocks out of the way, and connect with the apraxia community. Celebrate every victory, no matter how small. Stay involved in research and support groups.

When they are old enough teach your child to embrace what makes them special. I now focus on educating others about CAS and raising critical funds for research. What you do makes a difference – you have the power to help your child thrive