Enjoying the view through his eyes



When I gave birth to my sweet boy I was young and in many ways so very unprepared for life as a mom. I was 20 years young, wild, carefree, and in some ways incredibly reckless. Until I discovered I was pregnant, the only things I concerned myself with were trivial and meaningless. I was enjoying life in the fast line, living with no regard to tomorrow. It took an unexpected pregnancy for me to really re-evaluate my life.

I stared into my newborn son's beautiful eyes. I remember thinking how amazingly big they were. I knew even then that those eyes were meant to see the world in a different light.
Fast forward 2 years, many ups and downs, and a lot of learning later. I was almost completely done with my training as a Medic and my little one was getting bigger. We had already started the screening process for developmental delays and were waiting for answers. I knew something was different about my boy, he didn't smile much, he wasn't talking, he didn't laugh, and even though he had a room overflowing with all the latest and greatest toys he only played with his one small plastic giraffe.
I didn't know what it meant when they first said he might be Autistic and needed an evaluation. I spent hours in front of my computer researching, learning, absorbing all of this terrifying information. The more I read the more my heart broke for him, for us. I prayed they were wrong. I prayed he
would just wake up with an entire vocabulary, smiling, laughing, interacting, that he would just suddenly become "normal". I'm not proud of that ignorance, but at the time I didn't know any better.
 Months of testing and evaluations went by and one day the Neurologist finally said to me "He has low functioning Autism", but I already knew that. I wasn't sad, I wasn't relieved to finally have an answer, I was just numb.
I am a "fixer" by nature. This very character trait is what made me such a good Medic. I assessed problems, diagnosed the cause, and treated accordingly... very black and white. So once the diagnosis came I went into "move it or lose it" mode. Things moved fast, mainly because I wouldn't rest until I diagnosed the "cause", the reason. I obsessed about it! Because every condition, if diagnosed correctly, has a successful treatment, right? If I could just pinpoint the cause I could fix this, right? WRONG! In the back of an ambulance, sure, this rule applies to 99%
of things we encounter, but when it came to Autism I couldn't have been more wrong.
I jumped on every theory for the "cause" that I could find. I put on my medic hat and researched them all until I was either convinced they were possible or  convinced they were totally bogus. He started receiving home based speech therapy. He began early intervention and was going to school every day. We implemented the gluten free casein free diet, not just for him, for the entire house. He started occupational therapy. IEP's were written, goals made and assessed, I transformed into advocate Mom. We were in"treatment" mode and even with as exhausted as we both were, I kept going, I made him keep going. We lived, no "lived" is not the correct word, we FUNCTIONED like this for 3 more years.
He made progress, much more than they ever said he would. He was blowing the medical professionals away with his incredible intelligence in specific areas like history, but was still extremely delayed in others. It was a win-lose battle. His strengths were STRONG and his weaknesses were very weak. He was still the odd-man out on the playground. He didn't have very many friends. But he was trying, so very hard. Progress, even in the smallest form... you would think that would be enough. But it wasn't, we weren't happy. Exhausted, sleep deprived, emotionally drained... both of us. I pushed and pushed and pushed and secretly wondered if he would one day hate me for making him work so hard.
Throughout all of this time his Dad and I were not together anymore, I established myself in the Emergency Medical Services world and had my career stripped away from me by cancer, at just 23. I underwent radical surgeries to save my life but at the cost of my dream. Life had been unkind to the both of us. Guilt would creep into my mind in the darkness of night. I'd sob and beg God for an answer, why were our lives so hard? I would scream into my pillow and surrender myself to those overwhelming emotions that I kept hidden in front of other people. I would break. And I wondered if in the darkness of his room he was doing the same thing.

And then it happened...
One day something hit me, something I knew all along but could never wrap my head around. Looking back, I realize this epiphany was the answer to my many prayers. I just realized, FINALLY, that no amount of therapy or interventions would ever take the Autism away from him. And for the first time in his life, I was ok with that.
And for the first time in his life, I experienced the beauty of his world, the rainbow, all of its magic and color. From then on, I tried everyday to see the world as he does. I made a silent promise to never try to pull him out of that beauty again.
The less I pushed the more he learned, the more we connected, the happier he was. I was finally getting to know him, his quirkiness, his uniqueness, the pureness of his heart. He understood something that it took me much longer to finally get --- there is beauty in difference, enlightenment in understanding, and answers to prayers. Even the darkness of night can't stop the stars from shining. We don't have to do anything, we don't have to make the stars shine, they do it perfectly on their own. And if we can't see it from where we are standing, it's up to us to adjust our view. The same is true for our Rainbow Riders. In the process of intervention don't be blinded to their inner light. Don't try to change the unique beauty of their world. Show them that even if the rest of the world never sees it, you do, and always let them know how amazing they truly are. And if we as parents believe this deep within our souls, they will too!

This is how I ended up as a passenger on his rainbow. I must say since jumping on board life is much kinder, the air sweeter, the view is more than amazing. I am happy with where we are in our lives. And he is happy.... genuinely happy.
This doesn't mean I don't fight for his rights, it doesn't mean we gave up on therapy completely. He still needs the extra help. It means my priority for him is first and foremost just being a kid, and doing what kids do, and the rest falls into place after that. There's a delicate balance in finding what amount of intervention is right for an individual child, but I have found that if I just ask him, he is happy to let me know.

I will leave you with this quote-
I was in he movie theater the first time I heard it and I couldn't help but cry. I'm sure the people in the seats beside me thought I was insane.

"Yes! Big eyes, very big, because they are full of wonder. That is my center. It is what I was born with, eyes that have only seen the wonder in everything! Eyes that see lights in the trees and magic in the air. This wonder is what I put into the world..." -North, Rise of the Guardians

 

And this is the wonder our Rainbow Riders bring into the world! Imagine if we could see through their eyes for just one day, all that we could learn from them. It certainly is a beautiful thought...