May 14 is Apraxia Awareness Day, a day to advocate and educate others about the speech disorder that steals the voices of so many kiddos, including our little guy.
I guess you could say we’ve been on our apraxia journey since Jackson was 18 months old; we just didn’t know what to call it back then. We knew he was behind in his expressive language, but we had no doubt he’d catch up — after all, he was a very busy little boy. And he understood everything we said to him.
When we started speech therapy, I prayed the words would come, but they didn’t. In January, we learned Jackson had childhood apraxia of speech (CAS), which is a motor speech disorder.
He knows what he wants to say but he can’t. Simply put, his brain and mouth have a hard time working together, and his words get stuck in his head.
This journey has been filled with joy and pain; fear and hope; and laughter and tears. It has strengthened my faith and made me believe a little more in miracles, because I see small ones every single day.
Each word is a miracle.
A child with apraxia might have to hear a word approximately 3,000 times before it becomes part of their vocabulary. Our life is a constant game of repeat.Everything we do is a speech therapy session (we just don’t let Jackson know it).
I’ve learned there will be people who’ll never understand the hard stuff we face on a daily basis. They will blow it off, they will say heartbreaking things, they won’t understand why we parent the way we do.
There will be preschool directors who deem our kid difficult.
There will be church nursery workers who humiliate us in the hall.
There will be people who want to label him and give up.
But I’m slowly learning that it’s OK, because there are a handful of people — people walking alongside us — fighting for Jackson and loving him just was much as his dad and I do. They understand when his frustration causes him to hit. They listen when I just need to cry. They see past the lack of words for the amazing little boy that he is. They cheer him on and celebrate each miracle with us.
It’s the friend who whispers, “It’s OK,” and I see understanding in her eyes.
It’s the 13-year-old who rounds up her friends to wear blue in support of #TeamJackson.
It’s the mom sitting next to me in the speech therapy office who speaks to Jackson each day. The mom who I now call a friend.
It’s the grandmother Googling apraxia.
It’s the speech therapists who don’t give up.
It’s the church volunteer who encourages Jackson each Sunday while John and I worship without worry.
These are the people we want on our team. These are the people we cherish.
We are extremely grateful for our speech therapists who are helping Jackson find his voice; without them he wouldn’t overcome apraxia. Jackson looks forward to seeing Ms. Sarah and Ms. Angela each week. They are amazing advocates and incredible at what they do.
When you see your therapists four times a week, they become more than a therapist, they become part of your team. They become friends.
This journey has taught me that love needs no words.
Love is those big brown eyes sparkling. It’s his pouty lips kissing mine. It’s his little arms wrapped tightly around my neck.
These moments between my son and me are just as powerful as hearing those three little words fall from his lips.
I’ve been entrusted with this amazing little boy. I am honored to be his voice and to educate others about apraxia. This is just another chapter of our story, and it’s my prayer that through our experiences you will see his strength. That through the silence, you will hear his voice.
A version of this post originally appeared on Bringing Home the Missing Linck.
The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.