I remember like it was yesterday at work in a science lab. My students were working on an assignment as I took to the keyboard. Within the period I had drafted a letter to my city asking them if I could take up space in the park and 5 kilometers of the streets, to host an Autism Awareness Run. I had no clue what I was doing but every part of my being told me to take the leap of faith.
By 2009 I had already run a few charity races and thought to myself… Why not an Autism Awareness Run? As soon as I got the “green light” I immediately turned to my students asking if they would get out of bed early on a Sunday morning to give me a hand? The response was resounding YES. Hard to imagine teenagers willing to give up precious sleep to help others. Truth be told had they responded differently I don’t know if I would have had the courage to go forward. When I addressed my students their reaction fueled my desire to really follow through with things.
Next, I solicited my friends to form the organizing committee and together we hustled to get local business to donate water, food and a bouncy castle for the kids. On April 26th, 2009 it all magically came together and 225 individuals showed up at Park Montcalm to say “we support you in this – we support families living with autism”. In my eyes it was deemed a huge success!
I didn’t know what I as doing when I set out to organize the 1st Autism Awareness Run. I just went for it. What I wanted to get out of the Autism Awareness Run was to feel less alone - for people to understand autism - to accept my son - accept others just like him. I did it for selfish reasons because I wanted to know I wasn’t alone (at the time I didn’t know anyone else who had a child with autism). I feared that my family would be ostracized. That was the true catalyst for it all.
That was the seed that was planted when I decided to organize the very first Autism Awareness Run. It didn’t start with a huge DREAM of creating an organization. The idea was born out of wanting my son to be accepted for who he was.
A mother’s love
A mother’s FEAR
A mother’s protection
I wanted desperately for my family to be accepted. I wanted badly to prove we were
DIFFERENT NOT LESS.
The Autism Awareness Run/Walk for the time being remains to be our major fundraising event. It is important for the families living with autism to come out to see that they are not alone – that there are other families that look the same and live parallel experiences. It gives the families the opportunity to be reminded that other people see us, hear us and support us in our plight. It’s incredible that I had absolutely no foresight to the future when I organized that very first event. I simply took one year at a time. I let things take its natural course.
What started off as an awareness run turned into an annual fundraiser. The money raised was then used to create programs for children living with an ASD. When we raised an allotted amount of money I registered for non-profit status and S.Au.S. was officially born. I felt a sense of relief that after 5 years of operating the S.Au.S. programs, accounting, marketing and recruiting on my very own there was enough money to hire outside help. Eventually the team grew and that required renting an office space. That was a proud moment for me when in 2015 we had a “welcome cocktail” to inaugurate the opening of our new office space. Over time the number of programs offered grew, the number of families we helped increased and the money we raised became significant which forced us to register for charitable status. Now after years at the helm of S.Au.S. I have insight into what the future looks like. I have created the vision in my head and I believe strongly that together we can do this! Having provided services to young children and teenagers on the severe end of the autism spectrum we look to the future to be of service to adults living with the disorder.
Every person born has the right to live their best life possible. I believe I heard this come from Oprah the first time. I wasn’t even a mom yet but when she said that I thought “yes, yes, yes – everyone”. This is one of my core values – a space inside me that drives me to advocate for these families. When I stand to speak about autism or ask for help I do so because I represent, not just my own family, but more importantly countless others who need what I am asking for: support, services, money, compassion, acceptance and love.
I write this because I have committed the past 10 years of my life to be the voice for the voiceless and I am just getting warmed up. The road ahead won’t be easy! Why? We are headed into uncharted territory – with 1 out off 66 people (between the ages of 4-20 years old) currently being diagnosed with autism in Canada we do not have the infrastructure in place to help these families. Soon we will be dealing with people forced to stay home to care for their adult child. This idea in itself causes a lot of anxiety in families because it means going from two salaries to one (which directly affects their standard of living and their retirement fund). Now remember the average family has double income with a healthy retirement and children who go on to be financially independent. Families living with severe autism are forced to live on restricted budgets, meaning inadequate retirement savings to support the permenant family of three. SCARY! There are also high rates of burn-out and depression for the caretaker (a new burden for our already burdened medical system). The most significant problem in all of this is the unfulfilled potential of the individual living with autism. This is not a way for any family to live. If what I am saying resonates with you or someone you know then I am asking you to join forces with us. Be part of the change you wish to see. How can you do that? It’s simple. You can run, walk, volunteer, sponsor or donate. I encourage you to visit the S.Au.S. website to learn more www.s-au-s.org
Thank you for taking the time to read this Mama Bear’s blog