Testing, testing...1-2-3

Hello! And welcome!

This is my experience "down the rabbit hole" or as it's really called autism. When we began this journey two years ago I felt incredibly alone, scared and lost. I don't want any parent or caregiver to feel that way....realize you are not alone. Others who deal with autism daily will completely understand and be that shoulder to lean on that you will need at some point

I have a 12 year beautiful princess, who sometimes morphs into a grumpy tween, and a very handsome 4 year old superhero who has autism ( in addition to other medical issues ) and is absolutely hilarious. We moved from Orlando, FL to NYC in July 2013.  You will learn more about our lives through the course of this blog. . 

Here is something I wrote on November 12, 2013...it is my open letter to autism

Dear Autism,

You hovered over my life for some years before you came crashing down. I slowly saw you rear your head in the lack of my baby's words. I saw you grab hold of his hands as he sat and spun his car instead of pushing it along. I saw you try and keep his eyes from meeting mine. I saw you wrestling with him on the floor as I tried my best to calm him down during a meltdown. I thought you won the battle on May 21,2012 when the doctor said your name.

You know what, you haven't won. My son has fought and won many battles against you. He wins every single day when he expresses his needs or wants. He wins when he's able to say "vroom,vroom car" and sends it barreling across the room. He wins every time his eyes meet mine or he looks in his teacher's eyes. At times it comes naturally, sometimes prompted but either way it's always a win. He continues to fight the wrestling match between you and him, but those battles are getting shorter.

So Dear Autism, you are part of our lives. You are welcomed to stay just know your stay will be met with a fight. As you are a part of my child, this I have accepted, but I will not let you envelop him. So hang around, take a stroll with us, even lay around our home just try not to make yourself too comfy.

This one I wrote on May 21, 2014 ....two years to the day of his diagnosis

Monday, May 21, 2012 started as any other Monday. We were used to waking up,getting dressed, taking Leilani to school and then heading out to speech therapy. It was our usual schedule. After therapy we went out to lunch, it's what we usually did. In the restaurant sat his dad at one end of the booth, I sat at the other and Kaleo  sat in a high chair. It's what we usually did.....Kaleo had his usual lunch, I ordered what I usually got..so did his dad..it's what we normally would do. We left and started to make our way to Kaleo's appointment. It was our first visit with this doctor. His dad drove through streets that I hadn't traveled before. I looked out the passenger window at all the new sights. I had never been to that side of town. We drove down streets I was completely unfamiliar with.  Some seemed to have sudden curves in the road. Looking back, the symbolism is not lost on me. I remember looking back at Kaleo in his car seat and watching him spinning the wheels on his toy car as he usually would. Finally we arrived at the doctor. We got out of the car, gathered our belongings and headed into the office. We sat in the waiting room...Kaleo played with some puzzles...Nothing unusual...it's what he would always gravitate to. They called his name. I carried him into the room...nothing unusual...it's what I always did. Who would have guessed that once we exited that room, we would be completely different. Our "usual" would be gone......We sat in that room for close to two hours answering question after question. Watching the doctor put different puzzles in front of him....watching Kaleo as he tried to stack the blocks as the doctor had shown him.  Watching him quickly toe walk from one side of the room to the other. Listening to him say mama but yet never looking at me when he said it. He  simply said the word over and over. The doctor was extremely nice. She was a NYer, had practiced medicine at the same hospital Leilani was born in. I felt a connection to her, as you do when you meet someone from back home.  Shortly there after she said the words I didn't want to hear but deep down I knew. I knew they were there all along..I knew sooner or later I'd come face to face with you.  "So your question is" she said "does Kaleo have autism? The answer is yes". My heart sank, tears instantly appeared. My baby...my child!?!?!? What would happen to him when I'm gone !? How severe is it?! Will he ever speak?! Will he ever look me in the eye ?! Is my little boy gone forever!?!?!? My world seemed to come crashing down. I couldn't look at him without instantly crying. What was going to happen now. 

Fast forward two years later to May 21,2014. Our lives have changed in countless ways. Quite honestly, we are SO far from where I thought we would be. That same little boy who I thought I had lost that day was not lost at all. He's come leaps and bounds from where he was. He now says "mama" and he means me! 😄....... It's always followed by a barrage of questions or demands. They can range from "mama, where's my dinosaur toy?" to "mama, I want to eat pizza and chocolate milk". He looks me in the eye and hugs me tight. He plays with his car by rolling it on the floor instead of just spinning it's wheels. My Kaleo isn't gone. My baby is still the same wonderful, beautiful boy he has been since birth. My world is no longer crashing down. My world has just evolved. All the hopes and dreams I had for Kaleo have not been lost forever. They have simply morphed into other hopes and dreams. Our "usual" is gone and has been replaced with exceptional.

I've accepted you in my life. I've come to terms with your constant presence. I invite your eccentricities into our world. I could definitely do without your persistent sparring with my child....in fact if you could just let him win indefinitely that would be awesome. My little fighter is only getting stronger and the all engulfing grasp you once tried to have on him will only continue to get weaker. So Autism, as I've said before you're welcome to stay and hang around my Kaleo .....just know your stay will be far from a comfortable one.