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,