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 . . . )

Kick Leukemia's Butt!!

I have people ask me all the time, "How do you do it?" People tell me that they don't think they could handle having three children who all have a bone disease and one special needs child.  I smile and say, "You could do it if you had to."  So often I remind people, and myself, that we are just thankful that our children don't have anything terminal.

Not every parent can say that about their children, though. Children are diagnosed with horrible diseases each and every day--Including a three-year-old cutie, named Kevin. Here's the scoop:

My dear friends Gabby and Kevin Bolton are the proud parents of a precious three-year old boy, Kevin. Kevin, born on February 2^nd, 2011, is a high-energy toddler who loves nothing more than to spend his days on the golf course or driving range. On March 19, 2014, everything changed for Gabby and Kevin, when what started as a high fever turned into a nightmare as they received the awful news no parent wants to hear, "Your son has cancer." After a doctor’s visit where Kevin’s blood was checked to determine what type of viral infection he had and a ambulance ride at night to the children’s hospital, Kevin was diagnosed by a hematologist with acute lymphocyte leukemia. Kevin has already endured a bone marrow biopsy and his first round of chemo. He has many more rounds of chemo, spinal taps, and biopsy to brave as he battles leukemia. In a situation that most adults would find difficult to face, Kevin has handled everything like a champ. However, this is only the beginning of a long and emotional journey for Kevin and his family. 

          The Bolton family is in need of our support and prayers, so Buttons and Beaus are joining the fight to help Kevin beat cancer. Therefore, we will be offering two items from our website for a $5.00 donation to Kevin’s family. The full proceeds of any fairy dust & wand or lego necklaces purchased will be donated to the Bolton family. In addition, 20% of all sales until May 31, 2014 will also be donated to the Bolton family in order for the the family to stay focused on Kevin’s battle rather than the financial burdens they will incur.

           Use code Help Kevin Fight to donate 20% of your purchase, receive free shipping and leave a message for Kevin and his family!

We are just doing our part to spread the word and encourage people to help this awesome little guy. Please keep him and his amazing family in your prayers. When you get a spare minute go check out Buttons and Beaus--they have super cute clothes for your kiddos and, while dressing them in style, you can also help a child in need.  

Big-Hearted Gremlin

We have been blessed with amazing teachers this year.  We didn't really know what to expect when we moved up here.  The town is much smaller so we wondered how the schools would be.  Saying we're happy with the boys' teachers this year is an understatement. Both boys have teachers who go on and on about their character.  Teachers who genuinely care about my boys.  We had Logan's parent-teacher conferences this evening and his teacher talked about his big heart, how he cares about everyone and is a friend to everyone.  She said he is the first one to give an encouraging word and he cheers her on all the time.  I have no trouble believing this because that boy happens to be my biggest fan--he is constantly hugging me, telling me I'm doing a good job, and every night when I tuck him in he says, "I'm so glad I got you for a mom!"  He hates when Kaitlyn cries and if he sees some one hurting his little heart goes out to them.  He has big plans to change the world and try to make everyone happy.

He is excelling at reading and spelling and struggling with math . . . just like his parents.  I told Jacob that it was proof that he is ours; the son of two English majors.  He loves to tell/write stories and he has a great appreciation for art and music.  To say that I am proud of this boy doesn't even begin to touch the surface.  His love for others never ceases to amaze me.

We have been blessed with amazing kids.  I just had to brag about this gremlin and his heart for others.  I love him to pieces!

Differences Are What Make The World Such A Beautiful Place!

One thing I have learned is that children don't notice the differences in Alex.  Adults are the ones who notice.  Adults are the ones who ask questions.  Adults are the ones who make hurtful comments. We tell our children to accept the differences of others, yet they see us, day in and day out, talking bad about people because of their differences.  They dress differently, they parent differently, they live their lives differently. We constantly point out the differences of others.  I'm guilty of it as well.  Alex is popular at school and the kids love him and don't see him as different.  It's not the children.  It's the adults.

Alex's difference is Apraxia. It is a disorder of the brain and nervous system making it difficult to perform tasks or even speak, even though you understand what you are supposed to be doing/want to say and are willing to perform said tasks.  It is a very frustrating disorder. I knew a mom who wouldn't let her child invite Alex to play at their house because she didn't want to have to watch him for fear that he would be high maintenance or she wouldn't be able to handle him.  I have had people ask me, right in front of Alex, if he is mentally ill.  I think he was 5 when he first came to me and asked what "retarded" meant.  Life is not easy for Alex and Jacob and I are adamant that we do not let him take the easy way out of things.  No one else, out there in the big cruel world, will let him take the easy way out.  We want to prepare him for that.  He is one determined little guy and he is one of the coolest and strongest people I have ever had the privilege of knowing, much less the privilege of getting to hear call me "mom."

We are making changes in our home.  A LOT of changes.  Changes for the better.  Changes that will not only make our children better adults, but changes that will make us better adults, and therefore, better parents. Differences are what add beauty to this world in which we all live.  Different colors, different patterns, different thoughts, different shapes . . . the beauty of our world is made up of differences.  We cannot tell our children to be nice to people who are different and then turn around and point out differences of others in negative tones.  I love that the children in Alex's class don't notice his differences.  They just see Alex for who he is.

We should all strive to see the world the way our children do.  What an awesome place it would be!

Motherhood

We got to Kaitlyn's doctor's appointment this afternoon and a sign indicated that the doctor was running 30 minutes behind.  Kaitlyn ran around, a huge smile on her face as she enjoyed the open space of the huge waiting room.  The boys found a little table and arm wrestled a few times. Kaitlyn started getting brave and trying to get a little farther away from me.  So, a light bulb went off in my head. I took my three gremlins to the vending machine and let them each pick a snack.  After obtaining the snacks, which had them all bouncing and smiling with excitement, we headed back to the waiting area where we found some chairs.  My children happily ate their snacks.  The boys were talking and in their excitement they had grown loud.  I guess when you live with three happy and active children you get used to the noise.  I didn't realize they were being too loud until an older woman sitting near us started sighing loudly and rolling her eyes.

Let me just point out that my children weren't throwing tantrums.  They weren't running and chasing each other around the room.  They were sitting together, having a snack and enjoying each other's company.  Sure they were laughing and talking loudly, but, HELLO!  They're children! 

A few minutes passed and a nurse called the woman's name.  She sighed loudly and nearly shouted, "Finally!"  

My mini van is a mess.  We are in it a lot going to and from school, appointments, therapies, meetings, play dates.  We stay busy and my kids have a lot of snacks in that van and they have eaten meals in that van.  Every once in a while we clean it out and vacuum it but for the most part, there ARE signs of life in there--signs of little people.  (The plus side is, if we're ever in the van and some one says, "I'm hungry!" You can say, "Dig around and see what you can find!" I'm joking, of course--what's life without humor!) 

We encourage our children to be creative.  The boys make up games in the van on long trips and make up stories while we are sitting in a waiting room waiting for some one's name to be called. They laugh because they are happy, not because they are trying to get on your nerves. 

I am proud of my children.  No, they don't sit quietly and read a magazine as an adult would, but they don't run around the waiting room screaming.  They aren't disrespectful or rude. They are good kids and I find it sad that having them sit near you and do nothing more than talk or laugh irritates you. 

I guess, where motherhood is concerned, we just get used to the sounds of our children talking.  Hearing my children laugh makes me happy, I just can't help it. I guess motherhood does a lot to a person. You won't hear me complaining!