there are some things you just dont say to people

Today I was reading an article about the 11 things you don't say to an autism parent. It was a good article and I agreed with most of it. However one of the points stuck out to me most. I hear it all the time.

"But your child seems so normal".
"He must be high functioning"
"Are you sure autism is the right diagnosis?"
"They are just labeling too many kids as autistic these days."

All of these comments are almost daily. I hear them so often that I can hear it coming before its said. And I hate it.

I understand that people want to be comforting. I get that they are coming from a good place. However it doesn't come across that way, not to an autism parent. We go through countless battles for our kids, we fight our asses off to help them improve and when it shows we are so proud. And sometimes those comments hurt, because we've fought tooth and nail for this and its dumbed down to..."but your kid seems so normal."

The next reason this really bothers me is because we have good days and bad days. We plan accordingly and do our best to help keep our kids out of stressful situations. And more often than not, it means avoiding social activities. So yes, you saw my kid on a good day and that's great. But on a bad day, most people understand when you cancel plans because they didn't want to be around the "autistic child" anyway. I wish I could say it isn't true but all too often this is the way it goes.

While this probably came off as brash, I'm okay with that. Sami and I are incredibly blessed that we've had so much support from friends and family who love and support us daily. I am so incredibly glad that we are now in a place that is more accepting and loving towards Sami.

It is my sincere hope that one day Autism awareness will be widespread and we'll find a way to meet those affected with compassion and understanding instead of confusion or ignorance.

peace and love,

Life is either a great adventure or nothing- Hellen Keller

In a brief moment, it was all over. I sat there on our tattered couch with my knees to my chest, ready to lose all emotional stability. It was finally over, two years of mediocrity and pain.

There are no words to accurately explain what it feels like, to have someone you've dedicated your life to, say they do not love you. Surely I was going to cry or scream or do something reckless. But what actually happened, shocked even me. I slowly unfurled my body and stood up.

"Okay then, we're leaving. We're going home." My reaction was one only God could have given me. I'm not even sure I was even involved at this point as I am sure I was outside my body, watching it all happen but not really feeling any of it.

Two months later, Sami and I are preparing for the adventure of our lives. In two short weeks we'll get in our car, packed full of our most important belongings and we'll drive away from Oklahoma. We'll drive for what I am sure will feel like weeks and then we will arrive at our home. The very home that Sami has never gotten to know. The home that loves us, the people that love us and the place we belong.

I must be completely honest, this wasn't a split second decision by any means but once those words came flying out of my mouth it became real, in a way that three years of talking about going home never felt real.

Am I doing the right thing? Well I guess that depends on who you ask, however I'm done asking people what to do. I trust the Lord with my entire heart, and he has set every step in motion. He's provided every dollar needed and provided every person we've needed to help us on this path. I trust that God knows what he's doing, because I sure as heck don't.

As a mother, I am a fanatic of pros and cons lists. In fact, every major parenting decision has been made through this process. However this time, I know that no matter what I do, there is good and bad and positive and negative. I've spent far too much of Sami's life living by the lists and constantly allowing the "am I doing the right thing" attitude hang over my head. I've wasted far too much of his life by making decisions that benefited everyone except Sami and I.

We're going to write our own adventure and when he's grown we'll look back and decide if I did the right thing or not. But for today, we're doing this and we're going to do it together.

Sami will miss his friends and his father here. This will not be easy on him on any level but this is the best thing for him. He will have unlimited access to family and friends who love him for exactly who he is. He will also have better access to services to help him overcome and advance in life. He will continue to have access to his father and friends through technology and yearly visits and I know that in time he will adjust.

There are no guarantees in life but I will do my damnedest to fight with every breath, every day of my life to give Sami the best life I absolutely can. From now on, it will truly be Sami and I against the world and we're going to have a great time on this adventure together.


Peace & Love,

Dear Samual (part one)

I want to start a new section on this blog. It will be a collection of letters that I write specifically to Samual. I won't read them to him right now, but at some point when he reads this blog I want him to read them and know they are specifically for him. So without further ado...

Dear Samual,
In FIVE DAYS you will be three years old! My heart is beating and my brain is wild as I think about it. You have been alive for THREE YEARS and I can't believe it. See when you have your first child, EVERYONE tells you how fast they grow. I think it's like a rule that everyone gawks at the huge belly and then informs you that the baby will be 18 before you can bat an eyelash. In fact I heard it so many times that I went numb to it. I had no idea how right all these people would be. It feels like I blinked and suddenly you are three and you have grown from that tiny baby I grew in my belly, into a spunky little boy.

If you look closely you can see the spot where you would kick me and your foot would make my belly uneven. (photo courtesy of Liv Allen)

You my son have grown so much! You have grown into your own person with your own personality and sense of self. In fact sometimes I think, that at not yet three, you are more sure of your self than I am at twenty-seven.

I love you so very very much. Actually I can't even put into words how much I love you, as I don't know of any words that could explain it. When you were born, I was told that I would look at you and just fall in love. Those people were wrong because that's not how it happened to you and I. We took our time to get to know each other and eventually, over time we've become a team and I know that the love we have for each other couldn't be broken ever. It's an unconditional love that no other two people could have, because it's ours and no one else's.

The day you were born will live in my memory as the worst and best day of my life. I had no idea what to do with you but we learned together and I am so happy we did.  

When I think about what I love most about you, I instantly think of your passion. I would love to be half as passionate as you are. And you're not just passionate about one thing either, you are passionate about everything you do. My prayer is that you never lose that passion and joy, and over your life time, God uses that passion in you for his kingdom.

You are also one of the funniest people I know. You don't laugh all the time but usually when you do it is because you make yourself laugh. I've met so few people who can laugh at themselves the way you do. It's as if you just know how silly you are and don't care what anyone else thinks. It's this silliness that makes me enjoy each day with you. I don't know what I would do without your humor and joy.

This cheesy smile is my favorite

Oh my dear son, you should also know how stubborn you are. In fact the only person I've ever met who is more stubborn than you is your father. I pray, not that you lose your stubbornness, but that you learn to utilize it for good. I pray that you continue to use your stubbornness and passion for good in your life, and the life of others.

This is one of your best expressions. It's your "I don't think so" expression and as not funny as it is, I almost always laugh.

Despite your social misgivings you are compassionate for others. The way you love is beyond compare with others and I know this is a trait that is uniquely yours. When God formed you in my womb he formed in you that compassion and heart because I know you didn't get it from your father or me. I've spent my whole life learning to be compassionate, but you seem to have been born with it. You always seem to know the right moment to shower others with love and the way you show concern for others, even complete strangers brings me so much joy. I pray often that you do not become hardened by the world and lose this wonderful piece of your personality. I know that sometimes there is cruelty in the world but if you continue to face it with such love and compassion, you will accomplish great things.

My most favorite photo ever of you and I

Samual, you are the most amazing person I have ever met and I don't say this just because you are my son. I am told often by others how wonderful you are. You bring so many people joy and happiness and I don't know a person who has met you, that hasn't fallen in love with you.  Your big blue eyes and contagious smile are welcoming and bright. The world doesn't always understand you and I know you don't always understand it but the world is truly a better place with you in it.

I always thought that saying was silly "I couldn't imagine my world without you." It never made sense to me, because I did live in a world before you and I was "fine". However now that I know you and now that I have you, I realize my life was never quite complete before you were in it. You make my world complete and happier and I am a better person for having you in my life.

To wrap this up I want you to know that you are amazing and while we may not always agree or understand each other, I will always fight for you. I will care for you. And no matter what I was always love you.

All my love,
Mommy

Say & Boys

In the fall of 2011 I got a haircut. It wasn't the best haircut, but I was happy with it.
Why do I remember a haircut from two years ago?
Because that was the day I met my best friend, Shorty.

She didn't cut my hair that day but it was the day I met her.  Over time we gradually grew closer, saying hi to each other at work, learning our sons were close in age and setting up a play date.

The first meeting of say & boys

Over time Shorty and I hung out more and more and brought the boys together more and more. We would talk about how the boys would be best friends and how they would grow up together. We would joke about the teen years that would come some day and how the boys would be as they grew up.

What I didn't know at the time of these jokes is how much of the future we were predicting.
A bond was formed that few people can quite understand. These two became more than best friends.

They became brothers.

Despite Samual's social and sensory issues, they bonded. They fought (fight), hug and cuddle. They laugh together and piss each other off. They have taught each other and they've grown together and despite what the world says about Autism and socialization, these two have formed an unbreakable bond that Samual doesn't have with anyone else.

My heart loves seeing them grow together as they sing in unison, hug wrestle and enjoy a bowl of popcorn and then giggle hysterically together as I vacuum it up. They have truly taught me what friendship is about. O (boys) doesn't see Samual's (say) Autism and Samual wouldn't care if O was developmentally delayed either. They just love each other, because they do and that's just how it is.

We could all learn a little bit from Say and Boys.

Peace & Love,

Fireman Sam

     Samual has many interests. However if I had to boil it down, his biggest interest is vehicles. It started out with cars and everything was a car. He has a tendency to overgeneralize until he knows the difference so every type of vehicle was a car. Then after a while he moved to cars and trucks and was obsessed with both. Next came trains and oh boy did he ever love trains. He even knows the names of most of the trains from Thomas and friends. After trains came airplanes which is where we are now. However he still loves car and trucks and trains but airplanes get him the most excited.

     It was a Monday and a holiday (Labor day) so with out much else to do we decided to go visit the fire station and see if they would let Samual see the trucks. When we drove in we were a bit surprised to see at least 10 trucks lined on the streets and all around the fire station. Samual took notice and was beyond excited. I thought he was going to jump out of his seat.

     I walked up to the station first to ask if it would be okay and to explain Samual's special needs so they were aware if he was upset or screaming. They were so kind and understanding and told me to bring him up. I motioned to Jd who was waiting in the car with him. Jd got Samual out of the car and helped him grab his fire truck toy and before he could get a decent grip on his hand Samual started to run as fast as his little legs would carry him. The smile on his face is one I will never forget. When he got to the top of the driveway into the station it was like he was going to pass out from pure excitement.

He had this look on his face most of the time we were there.

     We had two men helping up, a paramedic and a fireman. They were both kinder than I could have imagined. They asked before they did anything such as turning on the lights on the truck. They asked about his diagnosis but didn't push for answers. The fireman got down to Samual's level and played with his firetruck with him. Samual loved that.

     At the end of our visit they informed us that they had been having a city wide meeting and soon there would be a lot of people filing out and ready to leave. This was our cue to go as Samual doesn't like crowds but they were by no means pushing us out. It felt like they were letting us know for Samual's sake. We waited a moment or two longer and I watched as men were filing out from inside the building. It struck me that they all stayed close to the walls and the outside of the trucks while we were on the inside. As we were leaving the men smiled and nodded and I felt so calm and at peace. I don't know if they were told there was a boy with special needs who couldn't be around large groups or what but they way they acted made my heart melt and I left with tears of joy in my eyes.

     I can't say thank you enough to the Tulsa Fire Department and the two men who opened their hearts to Samual that day. Samual has two new heroes and so do I.

Peace & Love,

Why?

     Every morning Samual wakes up, grabs his blanket (or as he calls it, bacon) and his pillow and climbs into bed with me to wake me up. We usually talk for a few minutes, he yells at me to wake up and then we play a game of how long can mommy lay there motionless before Samual decides he's had enough. It's not a perfect wake up routine but we're used to it and it works.

     Samual usually has sensory issues in the morning where his body takes a bit to adjust to being awake. Sometimes he handles these very well and others not so much. One of the ways he copes with his sensory issues is by pinching others. It is not usually painful and it is not meant to be either. He simply grabs another persons skin, pinches lightly and then tenses up his entire body. I can't explain the mechanics of it but I know it helps him to release some of that built up tension in his body. Although it is not usually painful we are trying to correct the behavior so that he does not accidentally hurt someone and we want to teach him other ways to cope with his sensory issues.

With all that explained I bring you this mornings conversation:

Me: Sami please don't pinch
Samual: Why?
Me: Oh, it's not nice buddy.
Samual: Not nice? why?
Me: Because it hurts people
Samual: hurts? why?
Me: Why? Oh...uh...I don't know why it hurts buddy.
Samual: okay wake up mommy.

He has never used the word why before. I was so excited but way too tired to try to explain why pinching hurts. It's amazing how far we've come in the last year or so. I am so excited to see what new things he will learn every day.

Samual enjoying breakfast and dragon show this morning. 

We get the results of his autism tests today. Will write on that later.


Peace & Love,

The journey to a diagnosis.

     The first time I heard "your child may have Autism" I cried hysterically. I threw a fit, I yelled and hit things, I cried to my parents and both of Samual's dads. I basically lost it. Of course my son will never know any of that unless he some day reads this blog. I coped with the possibility of Autism, the way I needed to cope. No one ever expects to hear those five words and everyone deals with them differently.

     In March of this year Samual's therapists started to mention testing more and more often. It went from being mentioned once or twice over 8 months to being mentioned every couple weeks or even sometimes, many times in one week. Personally I was not ready for this at all however I knew the conversation about testing needed to take place so Justin and I sat down to compromise and after a long discussion we decided to start the process in July. When July came my stomach got knots and I knew I wasn't ready but the time was upon us and it was important that we start it as the process takes several months.

     On Monday of last week Justin, Jd and I all went to the pediatric psychology office together. We were funneled into a tiny room and all sat on a couch together to talk about our boy. My heart raced and my mouth did too. We answered every question and waited for answers.

     My understanding of this initial appointment was to determine whether further testing was needed. As in does he have the markers for Autism or not?

     The appointment ended and the psychologist let us know that Samual would need to be tested. He will go through a 2-3 hour testing period while Justin and I fill out paperwork and answer further questions. A month after being tested Samual will receive a diagnosis. The psychologist did say that its possible Samual won't be diagnosed but when I asked what the likely hood of an Autism diagnosis was he said "extremely likely." However he did ensure me that without seeing Samual himself he personally can't give me a diagnosis right now.

     Myself and both of Samual's dads seemed to walk away feeling validated about everything we have done up to this point. It was made very clear that we are ahead of the curve. Many families walk in there with no plan in place and in the very beginning of everything whereas we have been working with Samual for a year and began this at a very young age in his life.

     In December of this year we will have a diagnosis and as much as I want to say it doesn't matter, it does. Will it change how I feel about my son? ABSOLUTELY NOT!!! Will it change how others treat him? I hope not. Will it change anything at all? Somethings but not much. So why does it matter? I wish I could answer that question but I can't right now because I don't know how.

     I love my son and I am so proud of all of the new things he is accomplishing and I am so happy with how much he improves every day. Samual is my pride and joy and I only want the best life for him that is possible.

peace and love,
Jacquie