Super Hero With An Apraxic Smile

Alex will begin telling a story. He will be loud enough to be heard, he'll be excited, he'll even be comfortable with himself. 

Halfway through his story the person he's speaking to will get this distant look on his/her face. Sometimes Alex will notice, stop, and ask, "Are you listening?" Too many times I will hear people say, "I don't know what you're saying," or "I can't understand you." Alex's smile will fade, his shoulders will slump, his head will  lower, and he will softly say, "Never mind."  At which point he is done speaking.

This breaks my heart. 

I have mentioned all of the simple tasks that we do without even thinking about them, yet they are so difficult for Alex (as well as other Apraxic children).  Speaking is one of those tasks.  Sure, we think about what we are going to say before we say it (well, most of us do), but we don't have to actually think about forming our mouth and tongue to make the words. Alex does. He knows what he's supposed to do but he just can't seem to get his mouth and tongue to cooperate. It's frustrating and exhausting.  

Since he was little he has loved super heroes.  This morning he was telling me something and I couldn't understand him.  I smiled and said, "Slow down.  Tell me again."  (He gets excited and starts talking so fast that there is no way you can understand him.) He took a deep breath and repeated what he was saying.  I said, "Okay, kiddo.  I understand most of it, but you have to remember that you speak like a super hero and I have these average person ears.  Talk to me like I'm not as cool as you, because obviously, I'm not."  This is an exchange we have had for years. Sure, at 10 he's getting close to outgrowing the "you-talk-like-a-super-hero" routine, but it always makes him smile. 

Anyone who has to work twice as hard to do half of what others can so easily do is a super hero.  Anyone who has to repeat themselves several times and still may not be understood, but they keep trying to be understood, is a super hero.  

Anyone who reminds us on a daily basis that things are only as bad as you make them, is a super hero.  

He is my super hero with an Apraxic smile; the coolest smile any super hero could have!  

Osteochondromatosis

I had a conversation with one of Alex's therapists recently about his bone disease.  She had noticed some tumors on his body and asked me about them out of concern.  She said, "I didn't want to mention it to him for fear it would frighten him."  Alex laughed and said, "No, I was born this way.  I'm not frightened."

I have recently had a lot of people ask me about my boys and their bone issues.

All three of our gremlins have a rare bone disease called Osteochondromatosis.  It is a disease caused by a mutated gene that can be passed down through generations. It causes tumors to grow on the skeleton and affects growth. We have been told that most children who have this disease are smaller than other children their age.

All three of our gremlins have had two surgeries to remove tumors and they will endure more surgeries as they grow. It has helped make them the little toughies they are now!  Alex had one arm in a cast and the other in a sling after his surgeries. We had to do everything for him and he HATED it, but (as is his nature) rarely complained.

I have had people say (in regards to Alex having this bone disease as well as Apraxia and Ataxia), "That poor boy didn't have a chance."  While he did seem to get the short end of the stick, it has helped shape him into the awesome kid he is today.  He knows life isn't perfect and things aren't easy.  He has to work harder and take twice the amount of time it takes other children his age to do simple tasks.  It has helped put things into perspective for him, and us as his parents.

Life is what you make it.  People say that God knew what He was doing when He gave Alex to us.  While I appreciate the compliment, I have to point out that Alex has taught us so much about life over the years. All three gremlins have helped make it so easy to not only find the bright spots but to also appreciate them (each and every one).

So often our bright spots are blocked by a tiny bit of negative.  We take that negative and we feed it, making it larger than it really is (larger than it needs to be).   Our gremlins remind us that those little negatives aren't worth our time.  It's all about the positive and finding those bright spots!

Here's to healthy, happy gremlins (and to appreciating those bright spots)! How blessed we are!

Support System of Amazing People

My mother always told me that God gives special needs children to parents who are strong enough to handle everything it entails. Even as a teenager my mother would point at me and say, "You could handle a special needs child."  It's a learning process and you just "do what you have to do" and have faith that those placed on your path are meant to be there.

The past decade has consisted of therapies, specialists, tests, surgeries, sleepless nights, and trusting that God has placed these wonderful surgeons, physicians, therapists, specialists, and teachers in our son's life.  So far, everything has fallen into place. We have met (and grown attached to) so many amazing people. People who, in turn, have fallen in love with Alex.

We have also had many people placed in our lives to help encourage and support us as parents of a special needs child. What a blessing these people are!

There are so many adults who can't understand Alex when he speaks; adults who only seem to notice what he can't do. We've had adults comment on a few things and it's not easy.  It stings and you walk away with a heart that is breaking for your child. Honestly, I think it is harder on you than it is your child (we are raising super heroes, after all).

The cool thing is, there are so many who see Alex as Alex.  They don't see him as a special needs child. They see a determined kid who loves computers and video games, who enjoys riding his bike and watching sports with his dad.  They see a boy who hates reading because it's difficult for him, but he keeps trying (and has grown to love comic books). They see a boy who loves Spider-Man! They see a boy who always has a smile on his face, always wants to help, and loves cooking. They see an ornery kid who tries to be sneaky and shoots you a sweet smile in an attempt to use his cuteness to get out of things (It works).

These are people whom we consider blessings.

(But wait!  There's more!)

My mom said that God gives special needs children to parents who can handle that life, but I believe He also equips them for the journey. He also gives those parents a support system of amazing people who encourage them, love them, support them, pray for them, and most importantly, they love their special needs child.

They love my special needs child!

I am thankful for the support system I have been blessed with.  The friends who always have a word of encouragement, the people who have been there and "get it," those awesome people who are on this journey with us, not because they have to be, but because they choose to be!

How cool is that?