If asked the question, what is the most memorable event in your life, what would your answer be? Just take a moment and really think about it.
I am guessing that most people would say their wedding day, the birth of their children or perhaps the death of a loved one. For me, the day that defined my life and the life of our family was October 29, 2014.
October 29, 2014. It was the day our family changed forever. I will never forget sitting in the doctor’s office after the ADOS assessment and she said Tyson has autism spectrum disorder (ASD).
It felt like all the air was just sucked out of the room. I immediately began to cry and didn’t hear much of what was said after that, except one thing stood out for me – if you have met one child with autism, you have met one child with autism. I’m sure other parents on a similar journey will probably remember these same words.
It is suppose to be comforting words, meaning that all children with autism are unique and that you can’t predict their future.
For me, these were not comforting words. In fact, it was the opposite. To me, it meant this professional here in front of me could not tell me what the future held. It meant she could not tell me if Tyson would ever speak.
Despite all the signs and months of questions leading up to the diagnosis, I was still in shock that Tyson had autism. I had gone to the family doctor with concerns and the public health nurse with a list of all the milestones that Tyson should be meeting but was not, yet after waiting months to see a child developmental pediatrician, I was still in denial.
For those that do not know, ADOS stands for Autism Diagnostic Observatory Schedule. We were invited to this little room, accompanied by a speech language pathologist (SLP) and a nurse, while the physician and the intern were behind a one way window.
Both the SLP and the nurse tried to engage Tyson in activities – play with toys, blow bubbles, join them for a snack. The job of the parent is to just sit there quietly and not provide any assistance to the child. With each task that Tyson did not engage in, the answer to our question was clear, yet I did not want to hear the answer.
In my mind, I was willing him to put the candles on the fake cake, and willing him to pretend blow them out … it did not happen. Each time they said his name or blew a bubble and waited for a response, my heart sank a little deeper. I tried to blame his lack of participation on his head cold but as the doctor said, he had all the signs.
For some parents, a diagnosis brings relief. For many, the journey from acknowledging a problem and actually getting a diagnosis can be up to 2 years. I’m not sure if that contributes to the feelings of relief or if those parents were just in a different mind frame than I was.
For months after Tyson’s diagnosis I would cry every day coming home in the car from work. I had just started a new job a few months prior and so I could keep myself preoccupied at work by completely focusing on learning all the new skills I needed to know. At home, things were busy enough with two small children. But when I was alone with my thoughts, autism was all I thought about. It had taken on its own life form. I could see the word autism in big bold capital red letters in my mind. It was the first thing I thought about each morning and the last thing I thought about each night.
I remember one morning, probably 3-4 months after Tyson was diagnosed, I got in the shower and as I was washing my hair the word AUTISM popped right into my head. I thought, wow, I am doing good today – I made it to the shower without thinking about autism.
Today, that place seems so far away. There are still moments of sadness and grief but they are far and few between. The real turning point for me was when I started to focus on Tyson, seeing him for the amazing person he is. He works so hard each day just to do things everyone else takes for granted. And he truly is awesome.
I am hoping this blog will be a way for me to share our experiences with the world, one story at a time.