LIFEWITHAUTISTICKID began 16 years ago as a journal in an old blue-lined school notebook. Writing with a ball point pen and a flashlight just before falling asleep, I needed to vent. He was my third son, and I was struggling to deal practically, emotionally, personally, financially, in every way, with the impact of his caregiving needs on my life and on my family. I saw myself entirely as a victim of a terrible circumstance, which had laid out a path for me that was fraught with obstacles, judgement, societal lack of understanding, and with no ability to divert to another route. My life was going to be a sacrifice on the alter of autism and developmental disability.
I was feeling very isolated, having a child whose abilities were over 2 standard deviations below what is considered normal functionning. It became hard for me to relate to my friends. I needed to find somebody who could speak the language of ABA and IBI and communication boards, and challenging behaviours, and sensory processing problems. And so LIFEWITHAUTISTICKID was born! Small fragments of connected experiences gave me great comfort at a dark time in my life.
Many years later while life continues to be very challenging, with my 2 year old in a big pubescent man’s body, I have come to see his presence in my life as a blessing. It occurs to me that he is an angel. He is not here to learn anything, he cannot learn, and maybe that is because he does not need to. He is here to teach not just me but all who are fortunate to come to know him.
I now want to write about him to respect and honour him for who he is. I am tired of a world that tries to make him normal. He is not and never will be, normal. If we truly want to respect and integrate people of all ability levels into our communities then we have to acknowledge that some are not able and/or do not want to and/or are not safe to participate in normal community programs and living arrangements. We need to take off our tinted glasses and creatively provide for differently abled individuals in our communities in ways that share facilities, and generate revenue to keep the costs down. Instead we dishonour them and their families by focusing on spending cuts and avoiding dealing with problems. We dishonour them, by pretending to cater to the average voter’s ignorance by flaunting public policy “integration”.
I hope by sharing my journey with as many others as possible, that there will be positive change in the nature and extent of social, residential and educational supports available to people with autism in Ontario, and Canada, and beyond.