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.  

Parenting Other Parents

As mothers we all have days that are overwhelming.  No, I didn't fight off aliens trying to break into my house all while making homemade bread, helping my child master long division, and writing the next big American novel. Just the everyday situations of life can be overwhelming.  Throw in voices of mothers who think they know more about raising your children than you do and you might just want to run away screaming.  

There are parents who feel their children are better than other children because they see themselves as better parents.  "Brandon is 8 and has already been accepted into Harvard, is working on the cure for cancer, and has a published book of poetry that is going to be a #1 best seller!"  Meanwhile you look at your 8-year-old wearing mismatched pajamas, dripping jelly from his toast all over the place, and staring in a daze at the talking beaver driving a car on TV. (This is a good place to add one other little thought.  When a mom friend is excited about her child's accomplishments this is not the time to get jealous because she is bragging about her child doing something that your child hasn't or can't do.  So what -- it's her child, not yours!  You should be happy for her and not bitter.  Childhood shouldn't be a competition.  Let her be proud of her child's accomplishments -- she deserves it!)

Last night we had parent/teacher conferences which ended in us scurrying out the door with two upset boys and a screaming toddler.  I joked (because, what else are you going to do) as we passed staring parents by saying, "Loud noises!" ("Anchorman," anyone?) as we tried to hurry out of the building. I felt defeated and I felt as if I was failing my children. Every mother has moments like this.  We are imperfect people raising imperfect children in a VERY imperfect world. 

Let me just add that raising a special needs child is no picnic. It adds a lot of weight to that already full plate.  We live in a constant state of exhaustion and we doubt over half of the decisions we make.  There seems to be no black or white, just a whole lot of gray. Stupid gray! 

This morning I had a conversation with my husband that made me realize that we're okay.  No, life isn't perfect.  My children are screaming and fighting as I type this, but that is okay. My children deserve the best and that is what I'm giving them . . . MY best. We are all going through the ups and downs of parenting.  Instead of comparing our children, criticizing other parents, and (in some cases) behaving worse than our children do . . . let's start encouraging each other. Let's stop being so demanding about things when we know parents have overly full plates as it is.  Let's be understanding.  Let's be compassionate.  Let's be encouraging.  Most importantly, let's mind our own business.  

This parenting gig is hard enough without critics whispering in our ears.  I watched my eldest gremlin (there are those mismatched pajamas I mentioned! Ha!) read to his little sister this morning.  This is one of the things he dislikes because it is difficult for him, yet when Kaitlyn brought him a book and said, "Aggie, read book.  Please?"  He quickly agreed.  He stopped me quite a bit to ask for help with some of the words -- and just as he was more than happy to stop what he was doing and read to his sister, I was more than happy to stop what was doing to help him.  Life is made up of many little moments, just like this one, that all fit together like puzzle pieces to form a bigger picture.  That bigger picture is that even though it's not an easy gig, we're all doing a great job.  Encourage your mom friends, ditch the discouraging and critical comments and replace them with positive ones!  

Your children will see this . . . and learn from your example.  How cool is that? 

A Normal Life?

"Do you think your son will ever have a normal life?"

I have been asked this a few times.  I smile and say, "What is normal?"  I have seen so many children come in with their mothers for therapies or doctors appointments and sit, sadly, while they wait to be called back. I have heard mothers tell their children with speech issues to be quiet so no one hears them speak.  I have seen parents criticize their children, point out their flaws, and expect perfection from them. (Spoiler alert: Jacob and I aren't perfect so there is no way our gremlins are going to be perfect.)

Alex will talk loudly to his brother in public.  He doesn't care who hears him and quite frankly, neither do I. This boy didn't talk until he was 3 and now he talks non-stop -- understand him or not, I say let the boy talk!  He happily makes jokes and plays with his sister in the waiting room.  When his therapist comes out to get him he will pretend not to see her and an ornery smile will creep across his face.  If he is looking at a magazine he will hold it up over his face and she will say, "Now, where is that Alex?"  He will crack up laughing. Sure, he struggles and life isn't always easy for him, but anyone who knows him knows that he is comfortable in his own skin.  He is an ornery and happy little guy -- issues and all. He has (dare I say) a "normal" life.

"Do you think your son will ever have a normal life?"  I hope not.  I think his life is fairly normal right now.  I mean, sure he has therapies and specialists and he is a special needs child, but we have tried to give him a life as normal as possible. He is not babied and he is expected to do his chores, help around the house, be respectful, try his best . . . you know . . . the usual. ;) We don't criticize or point out his flaws; we don't belittle him or expect him to be perfect. We encourage him every chance we get and we celebrate accomplishments, even small victories. This kid is loved and he KNOWS he's loved.  He's happy and for now that is normal enough for me. I hope that, as an adult, his life isn't just normal, but extraordinary.  I hope his life is filled with success and happiness, because if anyone deserves it, it's Alex.  You can keep your "normal,"  we'll take happiness instead.

Adventures Through Words

We have a great love for books in our house.  Sure, Jacob and I have ebooks that we read -- it's nice and convenient at times -- but there is just something about holding an actual book in your hands.  My love of the written word was my motivation for earning an English degree in college. Words are like puzzle pieces that have no designated connection piece -- they can be put together in many different ways to express many different things.  Words can be a thing of beauty, a thing of negativity or encouragement, or even a thing of harm. Most readers would agree that they enjoy getting lost in a story, filling the main character's shoes, and leaving reality for a short while to go on any adventure imaginable.

As I mentioned before, Jacob and I have a good number of ebooks between the two of us.  While this saves space and in some cases, money, we still have many actual books.  Our all time favorite books cannot be contained to ebook version -- they must be held, the pages smelled as we read, the rustling sound as we turn the page in anticipation of what happens next.

I also cannot bring myself to get childrens books in ebook form. The artwork alone deserves to be held in your hands.  "Fletcher And The Falling Leaves" by Julia Rawlinson is a favorite among my children. It is such a beautiful story with beautiful illustrations.  The last page of the book shows the tree glimmering in the winter snow and it has a wonderful texture that my kids love to rub their hands over and feel.  You just can't experience that with an ebook.

You're probably wondering why I'm writing this strange entry about books.  I'm not drooling and we don't keep our books behind glass cases to display all of their wordy beauty.  We just like books. Every night before bed I read to Kaitlyn, then I go to the boys' room and they read to me! The other night I sat down to read with Kaitlyn and she kept wanting to read book after book after book.  I eventually had to be the bad guy and turn off the light and say, "No more.  It's bed time!"  She cried and kept getting out of her bed to grab books.  When my boys read to me they both try to get on my lap -- I won't lie, they're both getting big -- are almost as big as me.  However, the fact that they still like me enough to WANT to sit on my lap while they read to me just warms my heart!

You have the beauty of the words, the artful illustrations, the smell and feel of a great book, and a closeness and excitement that you can share with your children that is almost like Christmas morning. We can be pirates, princesses, go to outer space or deep into the ocean, we can be monsters or visit far away places.  Hearing your child laugh during a certain part of a book, or gasp when something exciting or adventurous happens, or better yet, to reach then end, have them look up at you with a smile and say, "Again!" is an awesome thing.

Yes, we love books; not just books themselves but all they bring to our world.  What adventure will you take today with your children?

Apraxia Walk

Many parents I know often speak of how busy they are keeping up with their children's activities. We are in the same boat, except for different activities.  Alex has therapies that keep us busy, his therapists give us things to work on at home, as well.  We have to work on reading and handwriting at home, which can be time consuming. On Saturday mornings Alex gets tutoring for reading from our very awesome principal at the school.  She gives up her Saturday mornings to help children who are struggling to read.  There are a lot of mornings when she shows up JUST for Alex.  She is truly a blessing.  We also have other occupational therapy tasks we work on, such as tying shoes, brushing teeth, and washing hair.  We have had people act as if we are insane because our children don't play sports.  Alex's pediatric orthopedic recommended that Alex not play sports because of his legs.  Apraxia makes the coordination needed for sports very difficult so he just doesn't play. (Even playing a fun game of basketball, etc. with a friend can be emotionally stressful for Alex.) Logan refuses to play sports because his brother can't play.

Alex always asks why Logan can read better than him, why Logan can do things that Alex can't do, and why he has Apraxia.  As parents, there are days when it is difficult to watch him struggle. It is difficult to see other children his age thriving while our son struggles to do simple tasks and to be understood. He has therapists and specialists and I know there are days when he just wants to forget about all of that and just have a normal childhood.

THIS is why the Apraxia Walk is SO VERY important!  Oklahoma State University has scheduled their first ever Apraxia Walk through CASANA for November 1st.  We have encouraged our friends and families to donate money and/or walk with us. The money that you donate or the money you pay to register for this walk goes toward research Apraxia reaserch.  It is still a little known neurological disease.  Some experts say it is caused by trauma to the brain, but there are Apraxic children who have had no trauma, which leaves many questions.  Right now the only way to help Apraxic children is through therapies -- parents pray that as their child grows the therapies will help and they will one day be able to function independently as adults.  The donations also go towards treatments for Apraxia.

Alex has come a long way.  He still has a long way to go and it saddens my heart to watch it affect him more and more the older he gets. Jacob and I are exhausted most of the time from getting him to appointments and therapies and working with him day in and day out on things -- not to mention the two other children who deserve just as much attention.  We worry and we pray that by the time he graduates from high school people will be able to understand him and he will be able to do every task he needs to do -- and do them well -- in order to not only survive, but thrive in the adult world.

We want to have a good sized group of people walking with us to show Alex that he is loved and supported and to show him how special he is.  We also have a goal of $5,000 which we would love to reach.  We are a little over $1,000 away from reaching it.  I am asking all of my friends and family to please donate to this cause that is so important to us or, if you can, please register to walk with us on Nov. 1st and show Alex just how awesome he is. A HUGE thank you to all of you who have registered and/or donated.  You guys are awesome and we appreciate your support more than you know! You can click on the link below to donate or register to walk with us.

"Every child deserves a voice!"


http://secure.apraxia-kids.org/faf/search/searchTeamPart.asp?ievent=1114898&team=6011713

My Real Life Super Hero

Two weeks before Alex was born he was stretching a lot.  I didn't think anything of it because we were so close to the finish line (and let's face it, I'm not the biggest person in the world). I just assumed the little guy was running out of space. Two weeks later we were at the hospital ready to have Alex when they discovered an issue.  Alex's head was shoved all the way back and stuck.  They had to do a C-Section for fear of breaking his neck.  He slept for months with his head all the way back and his pediatrician referred to it as "Stargazing."  I have to admit, the poet in me loved that term!

Alex was quiet and we noticed he just wasn't making many sounds at all.  Over time we noticed he was struggling to do more than just speak.  We had Logan one day before Alex was 16 months old. We began to notice that Logan was doing things that Alex couldn't do. During this time we also noticed Alex had a bone disease (all three gremlins have it and all three gremlins have had surgery because of it). We were sent to specialist after specialist -- Pediatric Orthopedic, Neurologist, Pulmonologist -- the list went on and on. We added therapies to Alex's daily schedule and did activities at home to help him.  Do you have any idea what it is like to watch your child struggle to do simple tasks? To watch him have trouble holding and using a fork, writing, even smiling is difficult. His neurologist eventually told us that there was an abnormality on the back of his brain, near the top of the brain stem. No one is certain, but they think it could have been caused when he was "Stargazing" in the womb. This news was hard for me because I kept thinking things like, "I should have paid more attention," and "If only I had called my doctor."  The truth is, we don't know how long he was actually in that position and there was no point in blaming myself.  I took a deep breath and decided that feeling bad would do no good because I couldn't change anything.  I could, however, be the best mother I could possibly be for Alex (and the other two gremlins) and make sure he gets all that he needs.

I keep talking about Apraxia and the Apraxia Walk here in Stillwater on November 1st.  I'm sure a lot of you are tired of seeing these posts about the Apraxia walk.  Rest assured that after the walk you will cease to hear about it.  However, this is our life. I watch my eldest son cry and get frustrated as he tries to do things other children (including his brother) can do with ease.  I hear him ask me time and time again why he is different. I watch people stare at him and treat him differently.  No parent wants to see their child struggle, yet this is a daily reality for us. As a mother my heart breaks as I watch my child struggle, watch him get upset, watch people look at him differently or treat him differently. As difficult as it is for me, I can't imagine how difficult it is for Alex. To actually KNOW what he wants to do but not be able to do it.  I can't imagine how frustrating that must be for him.  How discouraging it must be to talk to people only to have them tell you they don't know what you're saying or to have others treat you differently.  I have an idea of how hard it is because I witness it each day, but I don't walk in his shoes.  Yet, each day I watch him try.  I watch him get frustrated, then try again, refusing to give up.  I hold him as he cries when something is too hard or he just can't seem to do it.  I hug him and cheer him on when he finally does something after trying over and over again.

The other night Alex was reading a Spider-Man book to me.  He still struggles with a lot of words but is doing better every day.  One of the pages talked about how people treated Peter Parker differently.  Alex said, "This is why I love superheroes.  They're not usually the popular kids, but they're different, just like me, and they can do awesome things."  I smiled and said, "Just like you?"  He looked up at me with those beautiful blue eyes and just smiled!

There are people who post a new selfie of themselves every day.  There are people who tell us how many beers they drank that night.  There are people who complain constantly and/or pick fights with people on social media sites -- if all of these things are acceptable then talking about my own life/our journey should be just as acceptable.  I never knew how much we could learn from a child before Alex. He has been an inspiration and has taught us so much about life.  He is our real life super hero and I'm so thankful that I get to be his mother!

Awesome Astleys

 Alex is starting to really notice his differences.  Today after school while Kaitlyn pulled all of the gallon sized ziplock bags out of their box and then tossed clothes pins all over the dining room, we talked about differences.  I started by telling Alex that his differences are what make him unique . . . special.  He responded with, "If differences are so great then why are people always mean to people who are different."

Let me just stop right here and point out that he shut me up quick.  I paused, thinking about what he said because, you know, he's right.  We tell our kids that differences are what make us special and then go out and judge people based on their differences.  Think about it.

I told Alex that he was right, but not everyone was that way.  I explained that if people were honest they would have to admit that we all have differences (as well as flaws.  I mean, come on . . . none of us are perfect).  I told him that so many people try so hard to be like everyone else and they just become another face in the crowd.  I said, "Here you are with your differences and you stand out -- not only as a special needs kid but also as a kid who refuses to give up, who works twice as hard as others and who has one of the best attitudes about life that I have ever known.  He gave me his trademark response -- a smile.  I said, "You don't need to worry about being like everyone else.  You need to just focus on being the best YOU you can be."

Then he said, "We are different."  I said, "What do you mean?"  He said, "Our family.  We're different."  Well, I can't deny that so I agreed.  Ha.  He said, "Our home is even different than other people's homes."  He's right. We don't really care for new stuff.  We prefer old stuff.  Old stuff has a history to it, a life and a story.  New stuff, while shiny and new is just not the same.  Take our dining room table.  It is older than me and has places where people have carved or written things on it from decades ago.  It's really cool. Our house is also full of color.  We love color!  I said, "Do you like our home?"  He said, "Oh, yeah, it's cool.  I love our home and I love our family. We're like super heroes.  The Awesome Astleys!"  Logan chimed in and said, "Yeah, like The Incredibles except we don't wear really tight suits."  I laughed and said, "Awesome Astleys, huh?"  Alex smiled.  I said, "You know what that means?  That means you're Awesome Alex."  He said, "I'm not awesome but I like the name."  I said, "You watch your younger brother do things you can't do every single day.  You keep trying, you work twice as hard, you never give up and most of the time you have a wonderful attitude about your life and about who you are.  THAT makes you awesome."

I got a hug.

Our story continues. ;)
(I have some ziplock bags and clothes pins I need to go pick up!)

Apraxia: A Glass Half FULL!

I tend to be a positive person.  However, I realize that some people are negative by nature -- it's just how they are.  The glass is never half full, it's always half empty.  I strongly believe that a positive attitude is a must when raising children and it is even more important when raising a special needs child.  There is an Apraxia group on Facebook that I get updates from.  I can read posts from other parents with children who have Apraxia.  So many posts lately have been from parents who are heart-broken or hurting.  They hurt from frustration in not being able to understand what their child is trying to tell them.  They hurt because they are tired of watching their child struggle to not only perform every day tasks but to express their needs or how they are feeling.  They hurt because of the way others look at their child or treat their child. So many of these parents share how they wept when their child was diagnosed.  So many post about how hard life is for them and their child because of Apraxia.  One woman actually said that her daughter's Apraxia had ruined her life. Another mother said that she never imagined anything like this could happen when she was pregnant -- she just assumed she would have a healthy child.

Let me stop right here.  Just because your child has special needs does not mean your child isn't healthy. I look at my Alex and I see a healthy and happy child.  I see a child with a positive attitude who never gives up. Sure, Apraxia affects him, but it isn't all he is and it certainly doesn't make him unhealthy.  It hasn't ruined his life (and it certainly hasn't ruined mine or my husband's) -- this is mainly because of Alex's attitude.  When Jacob and I got his diagnosis we weren't upset. We were honestly relieved to finally have a name to go along with all of Alex's struggles and issues.  We were happy to receive a huge stack of papers filled with information on Apraxia.  As we read it we had to smile because all of the descriptions fit Alex to a T! Finally, we knew what was going on with our boy and what we could do to help him.

The thing is, I encounter so many parents with special needs kids who are unhappy and overwhelmed. They are so focused on their child's special needs that they are literally missing out on enjoying their special needs child. There are parents with children in wheelchairs, parents with children who can't feed themselves, children who will never be independent or children who won't live to see adulthood.  Apraxia parents, take comfort in the fact that YOUR child WILL one day be independent.  Your child is not suffering from something terminal.  Our children may never speak as clearly as "average" children do and this may carry on into their adult lives.  Sure there are doctor's appointments, specialists, therapies, and IEP meetings (the list goes on and on). Our Apraxic children may always struggle to perform certain tasks, but this will not stop them from moving into a dorm some day and attending college, finding a great job and starting life on their own. There are so many parents on the Apraxia page who talk about how hard it is and how their child has meltdowns because they can't understand them.  One mom said she gets so overwhelmed when she can't understand her son and he gets upset that she has to leave the room and go cry.  Children pick up on our emotions.  If your child is frustrated and he feels that you're frustrated with him this is only going to stress him out even more. You are the parent -- encourage your child, be patient with your child and most importantly, ENJOY your child. Most of all, be thankful for your Apraxic child.  He/she has taught you so much about life, about overcoming, about enduring and about strength.  What awesome kids we have!

Lessons From A Child

Around 3:30 this morning Logan started screaming.  Jacob and I both jerked awake from our sleep and sat up in bed as our minds tried to push past the fogginess and decide what was happening.  Alex started screaming, "Logan!  Logan!"  Our brains eventually kicked into gear as if a switch had been flipped. Jacob and I both hopped out of bed and hurried to the boys' room.  Logan was sitting up in his bed screaming and crying and Alex was yelling at him.  I hurried to Logan and tried to calm him.  He said he had a bad dream and just felt scared.  I talked to him, comforted him, and eventually he went  back to sleep.  I went over to Alex and asked if he was okay and he said, "Yes, he just scared me."

Logan came out of his room this morning and said, "Remember the dream I had last night?"  I said, "Yes." He said, "I don't like bad dreams, but if we didn't have bad dreams, would we know that our good dreams are good?"  Logan is my thinker.  He asks questions about everything, wants to know how everything works and wants to understand why the world is the way it is. Sometimes he says things and I find myself staring into his snaggle-toothed, freckled little face and thinking, "Are you really only 8 years old?"

He made a perfect point though. He makes me think.  He also reminds me to focus on the positive and not the negative.  We go through life teaching our children--it's funny how much our children teach us along the way, as well.  May we always remember that all the bad things in our lives are merely there to shine light on the good things and help us grow stronger.  You may be growing stronger right now! ;)

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!