Wednesday, May 18, 2016

Childhood Apraxia of Speech

About a month after speech began, Sam's speech pathologist said she wanted to talk to me. His speech was slow in coming. He had a few sounds, nothing unprompted, and he wasn't blending sounds unprompted at all.


I knew this was something real. I could feel her tension and hesitation.

Big words. Words I had never heard before.

Childhood apraxia of speech.

She suspected, she wanted him on the waiting list early, and we could always take him off if he suddenly made big improvements and it was clear she was wrong.

I agreed. Of course, I want the best for Sam. Whatever this all means...

What does this mean?

I remember my mind reeling. I remember fear, and dread, and the sudden onset of guilt.

She explained that apraxia is a disconnect in the brain. That Sam knew exactly what he wanted to say, that the words were there, in his mind, but when he tried to say them, the connection from his brain to make the muscles of his mouth move properly was, for some reason, disconnected.

Guilt.

I was quiet, processing, asked what this would mean long term for Sam, but she had no answers. She said every child was different, every case was different.

Fear.

I signed a form to put him on the list to seen by the pediatrician, at the center. She gave me some sheets for more detailed information on apraxia. I smiled, trembling a bit, and gathered up Sam. I said thank you, and we left.



Its been 2 1/2 months since that day. Its burned in my mind. The guilt. That I did something wrong. The fear. For his future and what it will hold. The dread. Of the long hard road ahead for him.

I cried and cried and cried that day. Goran knew immediately when he got home that something was wrong. He tried to get me to talk but I just choked up tears burning my eyes, sliding down my cheeks. I showed him the info sheets. He quietly read them through. "This doesn't change anything for us! We luv Sam just the same." Of course I felt the same way, but there were all those feelings, of guilt and dread and fear, and it was so raw I couldn't even get them out. I remember snuggling a sleeping Sam that night crying and feeling so sad, so burdened, and so alone.



Processing takes time. I've come a long way since that day, but I'm sure there is more to deal with as we move through this journey.

I've joined an online support group, and it is a constant place of support and inspiration. I luv when people post videos of their 5, 6, 7, year old kids talking. So encouraging for someone else to write, 'at 3 my son only had 3 words, and now at 10 he can be understood by strangers'


I will fill in more gaps, but this is a big post. Writing is part of processing for me, and leaving this here for the world to see, feels big.

As with all our children, we luv Sam completely. As with every one of our children, we are providing him with every opportunity for him to reach his full potential. And as with all the children God has given to us, I am confident he was given to us, and he is the part of the puzzle of our family, and I wouldn't change a thing.

1 comment:

Kristyn Hiemstra said...

What a joy it has been to see Sam's progress over these last few months, in his speech sounds, yes, but more importantly in his ability to communicate with the people he loves. The journey ahead may be full of unknowns, but your love and unconditional support for him will be the best gift you could ever give him <3