I had some one say, "But it's just a speech delay, right?" I didn't sigh and shake my head. That is why Apraxia Awareness Day was created. It is actually referred to as "A poorly understood neurological condition." I had no idea what Apraxia was when they sat me down and told me that Alex had it. I had never even heard of it until that day. We have learned a lot over the years.
Apraxia of Speech is a speech disorder. Yes, Alex has it, but he also has nearly every other form of Apraxia. (He also has Ataxia and a bone disease called Osteochondromatosis, which means he truly is a super hero but that's a discussion for another day!) All 6 types of Apraxia Alex has affect him in different ways each and every day of his life. Apraxia of Speech makes it difficult for him to form words and sometimes it leaves him feeling misunderstood. Jacob and I are with him all the time and understand him pretty well but there ARE days when he gets frustrated because we don't know what he is saying. (I have decided that this is one of the reasons God gave us Logan so soon after having Alex. Logan has always interpreted for Alex and knows exactly what he is trying to say. He is also the awesome best friend who shrugs his shoulders and says, "There's nothing wrong with Alex, he's just Alex!")
Alex also has Limb Apraxia and Orofacial Apraxia. These two forms of Apraxia are frustrating. Limb Apraxia makes it hard for him to perform simple (and not so simple) tasks because even though he knows exactly what to do, he can't get his arms, legs, fingers, etc. to do it. He struggles to tie his shoes, hold a fork, ride a bike, hold a pencil, write, button a shirt, work a belt . . . the list goes on and on. Sports are difficult because it's so hard to dribble a basketball or catch a ball. (Although he does play with his dad and brother and has improved so much!) Even taking a shower and washing his hair can be frustrating, but he does it and rarely complains. Orofacial Apraxia makes it hard for Alex to move his face in the way he wants. It makes it difficult to smile, sometimes his smile is the way he likes it and sometimes it's "Crazy" (as he says)--no matter the outcome his smile is ALWAYS perfect and ALWAYS present! Raising his eye brows, winking . . . all of these little facial movements are hard for him to make. There are three other forms of Apraxia that Alex has, but they do not affect him as greatly as these three do.
It is a subject that is close to my heart. Alex has a lot of speech therapy and occupational therapy throughout the week--every single week. We wear blue and white on May 14th every year in honor of Alex and so many children like him. I have seen videos of children sobbing because their parents don't understand what they're trying to say; children having meltdowns because they can't do something that seems so easy for others to do, and parents upset because it's hard to watch their children react so emotionally. It is heartbreaking to watch your child struggle. It's heartbreaking when people can't understand your child and therefore just ignore him. It's heartbreaking when people ask questions with negative intent. Today is our chance to let people know exactly what is going on with Alex. He's okay. He really is. He has to work twice as hard as you just to do half as much and he does it without complaining. I think about how far he has come over the years and I can't help but be encouraged by this little boy's journey! Here's to my beautiful boy! We have watched you overcome so much and I know God has big plans for you!
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