More Than Wishful Thinkers
by Heidi Penning
Kingston, Ontario
Autism Ontario has been the voice of individuals with Autism Spectrum Disorders (ASD) and their families since 1973. Now here we are 2013, celebrating forty years of advocating for quality of life as respected and contributing members of society. Our family has deep ties to Autism Ontario and we are proud to be part of network of families across the province committed to and passionate about bringing about social change so that we all may live, work, and play with dignity in our communities.
Like so many stories about autism, ours too begins in a doctor’s office. The months following our son’s diagnosis were full of deep despair and real fear for the future. However, this is also a story about love, hope, and optimism. But first; the doctor’s office.
May 30th, 1997 is a day that I will never forget. I was sitting in a small and sterile doctor’s office with our son Hayden, who was just shy of his second birthday. He was at my feet, meticulously aligning wooden blocks in a deliberate pattern so that the coloured sides of the blocks all faced the same way; they had to face the same way. It was that day - this appointment - that my worst fears were confirmed; Hayden has autism. My perfect son has autism.
I distinctly remember the Doctor shifting uncomfortably in his seat, clearing his throat, and then finally settling his gaze upon me and saying, “Heidi, it is my feeling that Hayden is exhibiting a number of early manifestations of the autistic syndrome disorder. He is a child at risk of having ongoing developmental difficulties, and special consideration will have to be given to his management”.
What I recall next is being escorted out the door while simultaneously having an Autism Society of America pamphlet (really??) thrust in my hand and the Doctor saying something about calling him should I have any concerns arise regarding his management. Somehow we managed to stumble to the car. I buckled Hayden in, got in the car myself, and then sobbed.
The days, weeks, even months that followed were a blur of raging emotions; grief, anger, and depression to name but a few. A whirlwind of activity ensued. Second opinions. Voraciously reading anything and everything about autism. Intake interviews. Wait lists. Well intended family members and friends at a complete loss as to you to support you in this time of crisis. More wait lists. Frustration. I never felt more alone.
I literally did not know one family that had a child with autism. I desperately wanted to talk to another mother that had a child with autism. I had a million questions. Was it true? Did we really have to move for services? Did we really have to mortgage our future to pay for an array of services that would “cure” him? Could it be possible that I did something to cause his autism?
Imagine. Life before the internet. How possibly to connect with other families? Thank goodness for a kind-hearted case manager who heeded my request to hook up with another Mom – ever so cautious of the potential for privacy breaches – and facilitated a meeting. At a Tim Horton’s over coffee I discovered I was not alone after all.
In no time at all there were several of us Moms regularly getting together over coffee. Relationships are instrumental to a good life. The sense of belonging I felt with those Moms who understood what our family was going through was truly beneficial to my soul. What began as a coffee club soon began to morph into discussions around how we were not happy with the way things were and how we wanted to make a difference; not just for ourselves but all individuals with ASD and their families living in our area.
Enter Autism Ontario. The moment I learned of AO my mind was set. We – the coffee club Moms - were going to have a Chapter too. We set our personal agendas aside and formed the Upper Canada Chapter. We rolled up our sleeves and got down to work. Even though there was many times that we were completely exhausted we carried on. We had a deep conviction that we all had a stake in each other and that what bound us together had the potential to create extraordinary outcomes and perhaps even make the impossible happen; quality of life for individuals with ASD and their families.
Over the years since forming the Chapter I continue to be involved with AO one way or the other. I have AO to thank for so many wonderful things that happened in my life. It was as the Upper Canada Chapter President that I met, fell in love with, and married the Kingston Chapter President! Between us we have four children, and Dave also has a son with autism. Our family life can easily be described a little chaotic (understatement). We have our challenges, frustrations, worry, and fear. But, we remain optimistically hopeful, secure in the knowledge that we have the love and support of the autism community that is Autism Ontario.
Yes, we live in troubled times. Despite the urgent and pressing needs of our families’ governmental resources remain inadequate and there seems to be no political will for change on the horizon. This lack of security for our families undermines our health and well-being and is not acceptable.
Change we must. Being part of Autism Ontario has given me the opportunity to fight for something, not against. I have learned that there is no simple formula. Serious and significant social change is messy and complex. However I am optimistic that we – Autism Ontario – are more than just anxious critics of the status quo or wishful thinkers about a better future. Together we can help all of Ontario see the potential in individuals with ASD and their families. We can shift the perception that complex social problems are intractable and therefore impossible to solve to a lens that views complexity as an opportunity full of possibility. Thank you Autism Ontario for being our rallying point. Here’s to the next 40 years!
Like so many stories about autism, ours too begins in a doctor’s office. The months following our son’s diagnosis were full of deep despair and real fear for the future. However, this is also a story about love, hope, and optimism. But first; the doctor’s office.
May 30th, 1997 is a day that I will never forget. I was sitting in a small and sterile doctor’s office with our son Hayden, who was just shy of his second birthday. He was at my feet, meticulously aligning wooden blocks in a deliberate pattern so that the coloured sides of the blocks all faced the same way; they had to face the same way. It was that day - this appointment - that my worst fears were confirmed; Hayden has autism. My perfect son has autism.
I distinctly remember the Doctor shifting uncomfortably in his seat, clearing his throat, and then finally settling his gaze upon me and saying, “Heidi, it is my feeling that Hayden is exhibiting a number of early manifestations of the autistic syndrome disorder. He is a child at risk of having ongoing developmental difficulties, and special consideration will have to be given to his management”.
What I recall next is being escorted out the door while simultaneously having an Autism Society of America pamphlet (really??) thrust in my hand and the Doctor saying something about calling him should I have any concerns arise regarding his management. Somehow we managed to stumble to the car. I buckled Hayden in, got in the car myself, and then sobbed.
The days, weeks, even months that followed were a blur of raging emotions; grief, anger, and depression to name but a few. A whirlwind of activity ensued. Second opinions. Voraciously reading anything and everything about autism. Intake interviews. Wait lists. Well intended family members and friends at a complete loss as to you to support you in this time of crisis. More wait lists. Frustration. I never felt more alone.
I literally did not know one family that had a child with autism. I desperately wanted to talk to another mother that had a child with autism. I had a million questions. Was it true? Did we really have to move for services? Did we really have to mortgage our future to pay for an array of services that would “cure” him? Could it be possible that I did something to cause his autism?
Imagine. Life before the internet. How possibly to connect with other families? Thank goodness for a kind-hearted case manager who heeded my request to hook up with another Mom – ever so cautious of the potential for privacy breaches – and facilitated a meeting. At a Tim Horton’s over coffee I discovered I was not alone after all.
In no time at all there were several of us Moms regularly getting together over coffee. Relationships are instrumental to a good life. The sense of belonging I felt with those Moms who understood what our family was going through was truly beneficial to my soul. What began as a coffee club soon began to morph into discussions around how we were not happy with the way things were and how we wanted to make a difference; not just for ourselves but all individuals with ASD and their families living in our area.
Enter Autism Ontario. The moment I learned of AO my mind was set. We – the coffee club Moms - were going to have a Chapter too. We set our personal agendas aside and formed the Upper Canada Chapter. We rolled up our sleeves and got down to work. Even though there was many times that we were completely exhausted we carried on. We had a deep conviction that we all had a stake in each other and that what bound us together had the potential to create extraordinary outcomes and perhaps even make the impossible happen; quality of life for individuals with ASD and their families.
Over the years since forming the Chapter I continue to be involved with AO one way or the other. I have AO to thank for so many wonderful things that happened in my life. It was as the Upper Canada Chapter President that I met, fell in love with, and married the Kingston Chapter President! Between us we have four children, and Dave also has a son with autism. Our family life can easily be described a little chaotic (understatement). We have our challenges, frustrations, worry, and fear. But, we remain optimistically hopeful, secure in the knowledge that we have the love and support of the autism community that is Autism Ontario.
Yes, we live in troubled times. Despite the urgent and pressing needs of our families’ governmental resources remain inadequate and there seems to be no political will for change on the horizon. This lack of security for our families undermines our health and well-being and is not acceptable.
Change we must. Being part of Autism Ontario has given me the opportunity to fight for something, not against. I have learned that there is no simple formula. Serious and significant social change is messy and complex. However I am optimistic that we – Autism Ontario – are more than just anxious critics of the status quo or wishful thinkers about a better future. Together we can help all of Ontario see the potential in individuals with ASD and their families. We can shift the perception that complex social problems are intractable and therefore impossible to solve to a lens that views complexity as an opportunity full of possibility. Thank you Autism Ontario for being our rallying point. Here’s to the next 40 years!
