World Autism Awareness Day - Phoenix's Diagnosis

This is my second blog for World Autism Awareness Day. I've decided to look back on the boys' journey to their diagnosis today.

After so many years of raising Liam - who was 10 when Phoenix was born - I really thought I would know right away if my second little boy had autism. To give him a head start, I signed up for the Baby Sibling Research Study at Holland Bloorview. I figured that way if there was a problem, I would know as early as possible. Phoenix was very different than Liam as a baby, he loved to cuddle and babble and was very affectionate. I felt very confident in his development. His 6 & 12 month baby sibling check ups went well. I was feeling very confident.

Baby Phoenix was delightful!

Around 12 months old Phoenix started to develop a habit of banging his head when he was upset. I didn't think too much of it... He seemed to do it to prove a point and I felt like it was a social behaviour. In the next little while he developed quite a passion for numbers. He saw numbers everywhere!! His first word was 'two' and by 18 months he could count into the 30's and knew his alphabet. What a smart baby! I was excited to take him in for his 18 month check up and show him off.

NUMBERS!!

From my perspective his 18 month check-up seemed routine - but the feedback caught me off guard. They told me that his eye contact was fleeting, his interest in numbers was rigid and his head banging was a concern. As they listed off their concerns, the light dawned on me like a sunrise. These were red flag behaviours! How could I have missed them? How could I, the mother of an autistic adolescent not know right away if my second son was also on the spectrum? I was more surprised by my lack of awareness than I was by their concerns. It felt so different than when I figured out about Liam's autism - that felt natural and organic - a gradual realization. This was a ton of bricks. How does one not see a ton of bricks right in front of them??

Phoenix's next visit was scheduled for 3 months later when he would be 21 months old. For those three months I watched everything he did like a hawk. I analyzed every move he made. Some days I could almost convince myself that he wouldn't get the diagnosis, that the person doing his 18 month check-up was just too enthused and looking for things. But in my heart I knew that I was about to start a new complicated journey as the single mother of two boys with autism. When I took him back at 21 months I was expecting a diagnosis, and that's what we got. Once again I surprised myself at how devastated I felt. I really thought that I would take it in stride, as I had been through it before. I had to keep reminding myself that my grief was a natural, healthy thing - that it was the first step of the process... the journey... the life time that was beginning that day. I had to let myself grieve the boy that I would never know, before I could embrace the boy that I actually had. 

As hard as it was, the early diagnosis was a true blessing in our lives. Phoenix was able to begin intervention a full two years earlier than Liam did. I am forever grateful for the head start that he was given. Every day in every way he amazes me. It's going to be a wild ride - and I can't wait to find out what's next!!