Monday, 18 July 2016

Our Story

Some parents are told their child has challenges during pregnancy. Others are met with challenges when their child is born. And some challenges slowly creep up in time, while others are hit with a sudden event that change their family's lives entirely.

Our story is one about a slow surfacing of challenges over months, and then years. Our SC was born full term. It was a normal pregnancy, and an uncomplicated delivery. He was a healthy baby. He was a mellow and happy baby for the first twelve months of his life. He hit his milestones in time and all seemed okay. In his toddler years, he quickly picked up on all of his alphabet, colours, shapes, numbers, with ease.  As a first time mom, I boasted about how easy motherhood is and admired my bright boy's curiosity. I was vigilant in the first years to watch for red flags like eye contact, interest in faces, smiles, and communication attempts. Since it was all there, I thought we were in the 'clear'. I thought we were okay.

Then something changed. At around two years old, we noticed fixations. While other children played in the playground and within acceptable parameters, He would wander off into the parking lot. He would lay down and look at the wheels of strollers in the mall, at home, in the stores. He would line up his toy cars. He became very interested in all types of vehicles. He was more interested in the cars in the parking lot of the playground than playing at the structures. Well meaning friends and relatives brushed off our concerns saying, "Some boys just love cars!"

Although he had a large vocabulary, all was lost in articulation. I was the only person that could understand him. This was our first reason to reach out to early intervention. The speech and language assessment concluded that he had an expressive and receptive language delay. After the block of sessions, the speech and language pathologist (SLP) had reason to think there could be something else going on. I had already asked for a referral to a developmental pediatrician at this point.

At age three, he was unofficially diagnosed with ADHD. Three is too young for a formal diagnosis, so we were told to wait and try some behaviour modification therapy in the mean time. I still was not satisfied so I went for a second opinion. The second developmental pediatrician said that my puzzle child has ADHD, and started listing of medications. He was four. She dismissed our concerns about autism and did not do a formal ADOS assessment. She said, "He could have autism, but let's focus on ADHD first". Then off I went for a third opinion.

We were referred to a team of specialists at a research hospital. We had faith that they were better equipped to see the full picture of our child's challenges. Having already been diagnosed with ADHD from the previous pediatricians, they took a closer look at our concerns about autism. After the ADOS assessment, he was officially diagnosed with high functioning autism at age five. What's interesting is how irregular his responses were. There were times when he met the required tasks with little effort, and others where he did not attempt. His pediatrician noted that she understands why the other physicians did not look into diagnosing him; he did not fit the criteria as easily as other children do. Our child was a puzzle.

Although I knew in my heart that he will be diagnosed with autism at some point, the actual diagnosis hit me like a ton of bricks. I left the office with feelings of both relief and a heavy heart. Relief that I finally have an answer, and a heavy heart of what this means for my son's future. My eyes welled up with tears the moment I stepped in my car. My eyes did not dry until I got home to see him again. I had to be strong for him.

It has been a year since his diagnoses. We learned so much in that year and continue to learn every day. Some days are painfully challenging, and other days are fine.

The thing about this journey is it teaches everyone that it touches. I'm still learning patience, I'm learning to find comfort in our new norm. 

1 comment:

  1. Great read. How did you know that your son had autism before the doctors confirmed it?