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!