A Life-Changing Diagnosis
In 2016 my daughter Katelyn was diagnosed with Apraxia, otherwise known as CAS, or Childhood Apraxia of Speech. At that time I had never heard about Apraxia.
She was 4 ½ and unable to communicate verbally, even though she had already been in speech for over 2 years. At 4 ½, a child should be speaking in sentences and should be understood.
But for Katelyn, no one could understand her no matter how hard she tried to verbally communicate. Up until her diagnosis, I truly believed that one day everything would “click” and she would just start talking.
Katelyn’s Apraxia Journey Begins
After Katelyn was diagnosed with Apraxia, I researched Apraxia and quickly learned things weren’t just going to “click”. After researching I discovered we were in for a marathon. The professionals told me that the timeline was different for every child.
How long until my daughter will be understood by others?….no one could answer me. How long would she need speech therapy?….another unknown answer and the frustration that came with so many unknowns got the best of me some days. The finish line for Apraxia was impossible to predict.
There were many unknowns, but one thing was for sure, Apraxia would be a lifelong challenge. And my daughter would have to work harder than I could have ever imagined just to be understood by others.
Advocacy Through Education
In the years since my daughter’s Apraxia diagnosis, I have learned what it means to be an advocate for my child. I found that in order to help my child, the most important thing I could do was educate those around her.
Sometimes it was a 4-year-old friend, who needed a simple answer when they asked Katelyn “What language are you speaking?” Sometimes it was educating her teachers on ways that Apraxia could affect her reading and writing.
One thing became clear, educating others about Apraxia became the key in advocating for my daughter. And, I have learned time and time again that education has led to kindness and compassion from others.
Roller Coaster Ride
I have learned to ride this roller coaster. I have met amazing speech therapists who love and care for my daughter.
I have had other parents of children with Apraxia comfort me through the hard times, and I have done the same for others.
I have gone from being my daughter’s advocate and translator to watching with pride as my daughter has learned to advocate verbally for herself.
Embracing the Unknown
How much longer will my daughter need speech therapy?…8 years and hundreds of therapy sessions later and that is still an unknown answer.
But, now I can say I am actually OK with the unknown. The blessings from this diagnosis have made the struggles worth it.
The people I have met and the way that God has walked us through this journey has led me to a purpose, which is to share and celebrate with others who share the Apraxia diagnosis.
The Journey’s Next Phase
Update: In June of 2021 Katelyn’s speech therapist spoke these words to me, “We need to talk about the timeline for Katelyn graduating from speech therapy.” These words brought a flood of emotions and uncontrollable tears.
There were times through the years when I had asked her how long Katelyn would need speech therapy and I had always been told the same answer….”It depends.”…. Katelyn’s SLP would explain that Katelyn had multiple sounds and things to work on. Something could take 1 month or 6 months and there was no telling how long it would be all together.
I always understood this explanation and appreciated her not giving me false predictions. But now she was saying we were reaching the end. I was so proud of my daughter and so incredibly grateful we had found this wonderful SLP who was able to finally help my struggling daughter. But I was also terrified.
I knew this wouldn’t be the end of advocating and educating others when needed. My daughter’s Apraxia would still affect her speech.
I knew this wouldn’t be the end of the friendship I had developed with her SLP or the friendships with other parents I had met who also had children with Apraxia.
I knew this wouldn’t be the end of providing scholarships to graduating seniors who have Apraxia. Katelyn may have reached the end of speech therapy, but I will never stop sharing Katelyn’s story.
If there is any way that Katelyn’s Apraxia journey or the stories of the amazing seniors I have found through the Apraxia 101 Scholarship can give hope to others, there won’t be an end.
Because I know even though part of Katelyn’s journey has come to an end, it is always the beginning of someone’s journey with Apraxia.