The Story of Alex

Yesterday was Apraxia Awareness Day. I have had several people ask me about Apraxia and Alex. So, I thought I would share a little of Alex's story.

Two weeks before Alex was born I noticed that he wasn't moving as much. He did, however, stretch more and every time I felt him stretch he was in the same position. I'm not the biggest person so Jacob and I just thought that maybe he didn't have a lot of room.

When we went to the hospital to have Alex we learned that he hadn't moved much because he was stuck.  His head was shoved all the way back and because of this he was somewhat wedged beneath my pelvis bone and couldn't move. The doctor said that all of the stretching I felt was probably Alex trying to get free, but couldn't. As a mother that news wasn't easy to hear. The doctor suggested a C-Section to prevent any harm to Alex. The biggest concern was his neck breaking during birth. I was willing to do anything that needed to be done at this point so we proceeded with the C-Section.

Alex had breathing issues and at one point while we were still in the hospital he turned blue. Jacob hurried into the hall and got the nurses. 3 or 4 nurses came in, took one look at Alex and quickly wheeled him away without saying a word. The wait was torture. Finally, they brought him back and explained what had happened. One of the nurses even walked Jacob through how to deal with it should it happen again once we got Alex home.

Alex was quiet. Even his cry was quiet. When we held him he'd stare at us and lower his brow in a serious expression. It was almost as if he was disappointed with the parents he had been given! Ha!

He didn't coo as a baby or make many sounds at all. We eventually started using signs (with help from a therapist) to communicate with him. When he was around 3 he finally started using words. We also began to notice that he wasn't doing things other children his age were doing. It took a few years before we finally got the Apraxia diagnosis. We were told that sometimes it is caused from head trauma or it could just happen and no one knows why.

We were referred to a neurologist. She told us he also had Ataxia on his left side (this is the loss of full control of body movements. It made since, but it felt as if it was just another label being added to his already long list). She did an MRI and we learned that there is an abnormality on his brain near the brain stem. She said, "Has he experienced any trauma?" I told her about his position before he was born and she said, "I bet that's it!"

I had a brief moment where I felt guilty. I should have gone to the doctor sooner. I should have demanded that they do something because I knew something was wrong. I should have . . . I should have . . . I should have . . . Then, I decided that it really didn't matter. There is no changing the past.

Alex now has a list of specialists, therapists, a regular teacher and a special needs teacher. His schedule keeps us hopping. He knows how to perform certain tasks and CAN do them. You can watch him do things. He will struggle because it's difficult but he'll do it. Then you can ask him to do it again and he won't be able to. Apraxia is the weirdest and most frustrating thing!

He is one cool little guy, though. He is ornery. He will do things just to get a reaction out of me and then laugh. He is smart, helpful, and determined. When you have kids you think of all the things you want to teach them. You don't really think about all they will teach you. This gremlin has taught us SO much! Raising him hasn't always been easy but it has been filled with joy!

I can't wait to see what his future holds! I'm sure a cape will be involved!

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?

Raising A Super Hero

This morning Alex told me he feels as if he doesn't belong to either of his two worlds.  One world being those he encounters who aren't special needs.  The other being the world with special needs children. He has told us this on several occasions and Jacob and I have even talked about it.  We see it every day. We have been asked if he is deaf, because (according to some) only a deaf person would speak the way Alex speaks.  We have been asked if he is mentally ill. There are even those few who cringe and say, "What's wrong with him?"  

As a parent I worry about him.  I wonder how he will handle things when he's a teenager.  What will happen when he goes off to college.  How will he handle things when he becomes an adult and is forced into the real world.  It can be a cold and unwelcoming place.  Alex's world is my world.  My days are spent setting up meetings and appointments, driving him to said appointments, driving him to therapies, getting him to tutoring on time, meeting with specialists, taking him to have more tests run, scheduling surgeries and follow-up appointments. So much time is spent working on every day tasks that are difficult for him, knowing that if we stick with it he will (eventually) be able to easily do these things. 

With all of this comes doubt.  Am I doing all I can to ensure he gets everything he needs? Am I ensuring that he is able to just be Alex and not Apraxic Alex? As his mother I find myself questioning a lot of my decisions, pondering certain outcomes and asking myself if this really is the best decision regarding Alex and his development. 

This morning, as he was telling me about how he was part of these two worlds and felt as if he belonged to neither, I explained that most of us struggle in the one world in which we live.  He is doing an amazing job at fitting into both of his worlds from what I can see.  I know it is frustrating for him and oftentimes overwhelming.  He has a strength that I have never seen in another person.  The photo of him in his Superman shirt (like Clark Kent) is my favorite picture of him.  Clark Kent had his world, Superman had another world, yet it was the same person surviving with dignity in both worlds.  

The evidence proves it.  I really AM raising a super hero.