After you go through a life altering diagnosis for your child, the next one can come as a blow. I was actually prepared and somewhat relieved for our second.
Gabe was recently given a diagnosis of Childhood Apraxia of Speech (CAS). Apraxia is a motor speech disorder that makes it hard for children to speak. Difficulties in sending messages from the brain to the mouth make it challenging for children with CAS to make certain sounds and form words.
I suspected CAS for a while when I came across it in my plethora of early research into speech delays and Autism. He showed some early signs and then as some speech did come along, more signs emerged as he struggled with certain sounds and motor planning. So much like Gabe’s Autism diagnosis, this one didn’t come as a huge surprise and it opened doors to help him so I accepted it and dove head first into appropriate therapies.
The silver lining for Apraxia is it is in fact treatable with therapy and lots of work. Neither of which scare me in the least. It actually feels good to know that there is a chance for success.
Still, you have to find that extra strength within when you know your child is going to need all the more help and support. You have to be kind to yourself and patient with your child and when both of those at times fail you have to forgive yourself.
Because the truth is, this simply isn’t easy. Everything with Autism and Apraxia means more work, more therapies, more struggles.
I actually think something that hit me hard around the time of this second diagnosis was the realization of how much of Gabe’s childhood is passing us by. That broke my heart. My friends are signing their kids up for little league, soccer, karate, swim lessons, summer camps. Gabe gets ABA therapies, speech therapies and social skill therapies. His hours are filled with little room for traditional childhood activities. Not that Gabe is ready for all of those things or knows what he’s missing. But I know. And every part of me wants to give him every beautiful joy that childhood has to offer with a Mom who wants to enjoy it all with him. I simply don’t want him to miss out…I don’t want us to miss out.
I guess part of me is being selfish here too. I want to experience Gabe’s childhood with him. I want to answer questions from an inquisitive young mind and teach my son how to play games. I want to cheer him on at his first little league game and go on carnival rides together.
But we press on. I know that the hard work now will pay off for Gabe. That’s what matters. He needs me to help guide him through the challenges and be his voice. Now more than ever my voice needs to be strong for him.
There is a saying that I love - “He is my heart, I am his voice.” And I’ll be his voice for as long as he needs.
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