The Story of Alex (Apraxia Awareness Day, May 14th, 2013)

When Alex was an infant he didn't cry much; when he DID cry it wasn't very loud. It was a soft, quiet little cry.  As he grew we noticed he wasn't babbling like most babies do. He was just so quiet. Around 18 months, when he still wasn't really babbling we realized something was wrong, but didn't know what.  We talked to Alex's pediatrician and he agreed that it wasn't normal but didn't seem too concerned. We eventually had a speech therapist come to the house a couple of times a week to work with Alex.  Around the age of 3 Alex also started going to one of the local schools for additional speech services.  When Alex was 4 we learned that he was struggling to do more than just talk. He had to work twice as hard as other kids his age to do the simplest tasks. It wasn't until last year that we finally got a diagnosis for Alex.  I remember holding Kaitlyn on my lap while she ate cereal out of her snack container and Alex's therapist pulled out files and paper work, pamphlets and all sorts of information.  She told me that not only does Alex have Childhood Apraxia of Speech (or Verbal Apraxia) but he also has Oral Apraxia and Limb Apraxia.  This condition is still being researched and is referred to by many as a "poorly understood neurological condition." Basically, Alex knows what he wants to say or do, but somewhere between the brain and the muscles the message gets jumbled and it makes it difficult for Alex to do things that even his younger brother can easily do.

I have had people ask me why Alex makes a "silly face" in pictures.  Oral Apraxia is your answer.  This is Alex trying to smile.  Sometimes his smile is perfect and other times he just can't get his muscles to cooperate. What really amazes me about this condition is that children who have it can perform a task over and over with no problem and then one day, suddenly, they can't do the task.  Can you imagine?  Alex gets so frustrated at times and I can understand why.

Experts still aren't certain as to what causes Apraxia.  Many claim it comes from trauma to the brain stem or severe illness before the child is born. About two weeks before Alex was born he started stretching a lot.  He was in the same position but he was moving a lot so I didn't think anything of it.  When we went to the hospital to have Alex they discovered that his head was shoved back and he was stuck. They feared his little neck would break during delivery so they did a C-Section.  He had some breathing issues but nothing major.  I shared this story with one of Alex's therapists one day and her eyes widened and she said, "That could have caused some trauma to his brain stem. I'm not saying that IS the cause, but it could be."  Honestly, it doesn't matter what caused it, all that matters is that Alex is getting all the therapies he needs and is overcoming new obstacles each and every day.

We have heard stories about children with Apraxia who can't talk.  I am so happy to report that Alex CAN talk.  He has trouble moving his tongue and jaw to form words and on rare occasions we have difficulty understanding him, but he is able to communicate and I am so thankful for that.  He has come a long way and we are so very proud of him.  Each day he is presented with new challenges and he just takes it all as it comes. He is our little super hero and today, on the very first Apraxia Awareness Day, we not only want to educate people about this condition, but also celebrate Alex and all he has accomplished.  He is an amazing little guy and this mama could not be prouder!