Six weeks ago our nine year old daughter Tilley was diagnosed with high functioning Autism Spectrum Disorder. For years we knew that our child was different than her peers, but there always seemed to be an excuse as to why. At a very young age, we recognized that intellectually, Tilley was more advanced than those her age, but she struggled with social norms. In Kindergarten, she could spell and read better than children three grades ahead of her, but she couldn’t handle waiting her turn to play. She could work numbers as well as kids much older than her, but had a meltdown if her pencil broke.
Our home was filled with unhappiness and frustration as we tried to move from one day to the next hoping to avoid anything that might cause Tilley to have a meltdown. Our morning could be going fine until something as simple as a drop of apple juice spilled on her clothes at which point she would strip down (often right as we were trying to go out the door) and begin rolling on the floor crying. When this happened, it could take 20-30 minutes to get her to calm down. Most times once she “snapped” out of it, she behaved as nothing had happened.
Over time, we became familiar with the types of things that would set her off, and as such, we became very good at micro managing her life. The biggest glitch in that plan was that we couldn’t control everything on her behalf as a large portion of her day was spent at school. At school, there were teachers that tried to understand and help her and there were those who often made things worse. She has always referred to them as either “warm fuzzies” or “cold pricklies” and to be honest, I have always agreed with her assessment of her teachers. Kids know a decent adult when they meet one.
When she was diagnosed, we were not surprised. We had exhausted every possibility for her “quirky” behaviours ranging from “she’s gifted” to “she’s spoiled” to “she’s a perfectionist”. The diagnosis actually was a relief because we had a direction to move in to try and help her and our family heal.
In the first few days after the diagnosis we began to see that there were many agencies and organizations available to help us help her. Tilley’s diagnosis of high functioning ASD is also sometimes known as Asperger’s Syndrome; at least this is what we identify with. This is why I have chosen to fundraise on behalf of Asperger’s Society of Ontario at the Scotiabank Toronto Waterfront Marathon.
This organization in particular requires our attention and support as they do not receive government funding for the support they provide. The STWM is one of their biggest opportunities to raise funds to help them provide services and I have committed to fundraising on their behalf.
Running is a great way to fundraise as most people are willing to donate their money as long as you are the one doing the running. “Take my money; just don’t ask me to run”. I am so excited to be tackling my first marathon at STWM and to be aligned with ASO.
When I last communicated with Alexandra at ASO, she indicated that a pressing issue on their agenda was a meeting space that was affordable and accessible. If you have space like this please contact her.
Please help me to help them continue to help people like my sweet Tilley, by registering for the STWM and fundraising or by donating to my effort. This is something I CAN do.
