photo by Tara Long Photography
I was so busy telling you the back story in my first post, I didn’t get a chance to explain what Apraxia is or how we came to realize that was what our son most likely had.
I still remember the first time our speech therapist mentioned the word Apraxia. It was during one of our sessions where I was bombarding her with the usual questions, “Do any of the other kids you see, struggle this badly?” “Why can he say a word sometimes and then he never says it again?” “Do you think it is because of the low muscle tone in his face?” I was full of questions; especially the closer he was getting to three and still not talking.
That day she threw out two words I had never heard before, Apraxia and Dysarthria. I think I was in major denial, it took me three weeks to even pronounce them correctly. She said her personal opinion was that he had a combination of both. This is how she explained them to me, and this is how I explain it now too.
Apraxia is a disconnect in the motor-planning part of your brain. When you and I talk we don’t have to think twice about the movements are mouth is making to form the words and sounds that are coming out. For a person with Apraxia, there is a disconnect there and they have to work extra hard to form words and sounds. Dysarthria is weak or low tone muscles in your face (it can also carry through to other parts of your body.) Both of these conditions have varying degrees of severity.
In our therapists opinion Thatcher had a mild case of Dysarthria and he most likely also had Apraxia. She wouldn’t say much more then that. She pleaded with me not to look things up on the internet. It’s strange to look back on that time. In my memories I feel like everyone involved was walking on egg shells around me. No one wanted to tell me how serious it could be. On one hand I understood this reasoning on their part, he wasn’t three yet, and there was a chance (however slim it might be) that this would all resolve itself. I am sure the therapists and team members involved didn’t want to give me false concern if this were to be the case for Thatcher, but I wish they would have given me worst case scenario…knowing the worst would have pushed me to start working harder with him earlier, instead I felt coddled and like there was a chance he just needed more time.
At this point Thatcher spoke Caveman. I was really quite good at translating and interpreting it. He had grunting down to a science. The tiniest difference in his inflection meant something different. For the most part I understood him completely. My husband would be upstairs helping Thatcher with something, and I would hear the grunting and Thatcher getting increasingly more agitated because dad was not understanding. I would yell up stairs, without even seeing what was going on, and know exactly what Thatcher was trying to tell dad. “Dad, he doesn’t want to wear that shirt.” “He wants his blue blanket.” He needs help getting his toothbrush.” My husband thought I had super powers.
As we started our move Thatcher was one week away from turning three and the only words he would volunteer on his own were, “Da” “Ma” and “Ba” (which meant anything from bus to brother to boat or anything that started with a B.) With a prompt he could say a few more things. He had about 20-30 approximations. Approximations mean that instead of “blue” he would say “bue.” Even now, almost all of his words are approximations, but believe me – we will take it!
Right after we got moved in I took him to be evaluated. It is very hard to watch your child with someone they have never met. I remember the evaluator asking him what color a blue block was. Blue was one of the words he could say with a prompt. I knew if I said it once for him he would be able to say “Bue.” But that is not how it works. It hit me that I wouldn’t be there to give him prompts when he went to school either. These types of realizations were happening on a daily basis, and I felt like I was starting to live in a constant state of worry for Thatcher and his future.
The evaluation came back. In their opinion he had Apraxia. The packet I received was filled with papers, charts, graphs and percentages for everything you can imagine. One graph is burned into my memory forever. The line graph that ranked how severe the apraxia was. It was a scale of one to sixteen. I will never forget the feeling of my heart dropping to my stomach when I saw the number 16 circled. What did this mean for my sweet boy?
That night I looked up anything I could find on Childhood Apraxia. I cried and I cried and I cried some more. In a very real sense, I felt that parts of the dreams we had for our little boy were shattered. I found this site Apraxia Kids that night. The little video on that sight almost had me in convulsions I was crying so hard. It said everything I was feeling in my heart.
As we continue down this road, on a journey we never planned on taking, I realize that our dreams for Thatcher are not shattered. No. The dreams are definitely still there. Thatcher just needs us to carry them for him for a little while. And even though there are many things I can’t do for him, that is one thing that I can do, and I will, for as long as it takes.