Apraxia: It's Not Just A Speech Delay

    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!

A Letter To My Son

This week is bursting with emotions.  It is the last week of school; a time that is met with excitement and impatience as you await summer vacation.  This year, your excitement is met by immediately starting summer school the following Monday.  I watched you skip down the sidewalk to the van after school today; a huge smile spread across your face.  Summer school or not, you are still excited.

Apraxia Awareness Day is Wednesday.  A day to bring this little known disorder to light and educate people on something that should hold you back, but instead, gives you wings to fly . . . your very own super power, if you will.  It has not slowed you down. It has not taken your happiness.  It has not discouraged you or made you feel like giving up.  Everyday you are met with new challenges.  I watch you work twice as hard to do half of what other kids your age can do so easily. I watch you struggle.  I am always met with a smile and two sparkling eyes as you shrug your shoulders and say, "Well, I did my best."  You know that is all we ask and we couldn't be more proud of you.  You have taught us so much about being a strong person, about determination and a positive attitude.

You have grown so much over this past year.  It has been quite a journey and I'm so blessed to have been able to see the changes in you.  We once spent mornings in tears as you begged me to let you stay home from school.  "It's too hard and I can't do it! Please don't make me go."  I'd fight back tears and force a smile of encouragement and explain why you had to go.  It was never easy, but by the end of the day you were fine.  This year we had no meltdowns.  We had no unhappy mornings met with tears and begging to stay home.  This year I was met with smiles and a happy boy who didn't mind going to school, even though it was still hard.  We watched you go to a new school where you knew no one and you made some amazing friends.  We watched your happiness and strength grow and blossom and we got to witness the results of all of your hard work.

Now, we are met with circumstances that seem to be out of our control and that is okay.  As your mother, I can't help but be a little emotional and worry about you. You turn to me and smile, your super hero cape blowing in the wind and I am reminded that you truly are one of the strongest people I know and I couldn't be more proud of the amazing little person we have been blessed to call ours. Whatever this new chapter brings, we'll face it together and I know you'll use it as another opportunity to show the rest of us what it really means to be strong and persevere.

I hug you tightly and ask, "Do you know how much I love you?"  You smile and answer, "Yes, 100%."  I couldn't have said it better myself!

Pass or Fail?

A few weeks ago our eldest son participated in the OCCT.  We had no positive thoughts about this test as we sent our special needs child off to take it, knowing that he was being set up (unfairly) for failure. Alex knew it too and his attitude about the entire situation was amazing.  He was brave, he was positive, he was accepting, he was strong and he was mature.

We should have sent him off in spandex and a cape. His attitude was deserving.

Fast forward to today. Newspapers and media are posting articles stating that nearly 8,000 third graders failed the reading portion of the OCCT and will not be promoted to the fourth grade.  16%-20% of third graders are going to be contacted and told that, while their friends get to go on to fourth grade, they will spend another year in third grade. Alex struggles with reading so odds are, he didn't do well on this test and he is one of the nearly 8,000 who didn't pass. Before he took the test, Jacob and I worried about how this would affect him emotionally.  Not only would his buddies go on to fourth grade, leaving him behind, but he'd now be in the same grade as his little brother.  A little brother who isn't special needs and is reading at a much higher level than Alex.  A little brother who can do math with very little help and writes stories.  A little brother who can do all these things that Alex struggles to do . . . or can't do.

My Alex smiles up at me with sparkling blue eyes, shrugs his shoulders and says, "I'm just different."   Who says different has to be a bad thing?  I have had so many people tell me that Alex is going to do big things some day because of his personality and attitude. The older Alex gets, the more he notices differences in himself.  He has amazing friends who encourage him, though.  He is surrounded by so many amazing people at school and church who cheer him on and love him . . . differences and all.

Should he be one of the 8,000 who failed; should he have to repeat third grade, it will merely be one more obstacle in a line of many for him to overcome. Maybe (if he failed) he would benefit from repeating the third grade; however, he still will not be at the reading level "they" want him to be.  He has an individualized education plan (IEP) for that reason (among others).  One thing I do know is that no matter the outcome of all this, ALL of those people in Alex's life who love him and cheer him on will still be there loving him and cheering him on; reminding him of just how awesome he is.  That's a win in my book! (Now, we wait for the results . . . )