Yep, that’s right! Willowjak is one year old already! Woohoo!
It all started with three baby boys who inspire me most – Will, Owen, Jake – whose lives inspired me to grow a vision of the Willowjak legacy: to build an inclusive community that was committed to authenticity, respect and a belief that no one is less than. We are well on our way in that vision and have created a lot of content in the last 365 days to achieve that goal.
Our social media is active and growing everyday; you can follow our daily Instagram stories to keep up with what Will and Owen are getting up to and we share insights from our own experience that might help other parents in the autism community or other caregivers. You can also keep up with all of our new content on our Facebook page.
Our blog has over 250 posts written by a collection of my inspiring friends who write real and honest accounts of their experience with caregiving, disability, mental health, wellness, allyship, parenting and other life transitions.
I’m also super excited to have launched our ‘Choose Your Own After’ podcast. We take our blogs a step further and interview everyday people who share their life’s defining moments or decisions that created a ‘before’ and ‘after’ that ultimately launched them into a positive mindset that I hope will inspire you as much as they inspired me.
But today and for the next month, we will take a look back in celebration of all that we have learned, shared and accomplished, by revisiting all of our writers’ original posts. I hope that we introduce you to some stories you might have missed. Please show the writers some love by commenting and sharing their posts.
We couldn’t be here without our readers. Thank you so much for all the love and support and I hope that you are taking some of what you learn from our writing into your world, to support the people in your community.
This post originally appeared on September 4, 2020 and was titled “Welcome! Let Me Introduce Myself”
Welcome. And so it begins. Happy to have you join me. I am Stacey, a 46 year old woman who writes to get herself out of the dark. I have used writing as a tool for catharsis as long as I can remember; with memories of diaries that locked with a little key and the euphoric joy I’d feel in holding the most perfect, leather-bound journal. Keyboards, apps and blogging may have taken the place of my earlier days of diary-writing, but that feeling I get in releasing through writing has been a part of me all along. I am aware that I might be that grandma in 2020 who just discovered Facebook, by blogging and not podcasting. But writing forces my brain to slow down a little and be more thoughtful and the result is a more honest account and less verbal vomit. You’ll thank me.
If you know me already, or if we have never met, I’m sure you’ll get to know the real me bit by bit in the posts to come. What is important to know is that I’m not slick and shiny. You aren’t going to find a beautifully photographed site, whose design will evoke envy and lust for a lifestyle I am pretending to live.
I am a real person, with real challenges, who shares her stories of triumph and struggle in the hopes of creating community. Typos might just be the single-most greatest pet peeve of my life, but you’re going to find them here. I love simple beauty and take great pleasure in the sound of birds singing, the shape of a perfect leaf, and the blue of a clear sky can truly make me want to weep. I am inspired by the people who have lived through challenges before me; by out-of-the-box dreamers; by community leaders; and healers and survivors of all kinds. I am always learning and I believe that my three sons are my greatest teachers.
I have invited a group of kick-ass friends to participate in this project with me. We are all on our own journeys to be better, to be well, to get unstuck. We come from different upbringings, environments and lives but we all share a common link. It’s the thread of wanting ourselves and our community to be better. I am really looking forward to you getting to know all of us and to open up some discussions that might help in your own journey.
This post originally appeared on September 13, 2020 and was titled “The Benefits of Story-Telling”
What is your gift if you were to choose one? If I were to choose, I would say mine might be my ability to share. Sharing stories not only releases their burden on my own heart and mind, but it shines a light on issues that may not have otherwise been noticed. I am pretty sure that there are many out there who see this as a fault, or a mark against my personality. But that’s on them, I wear it proudly.
We live in an era of the over-share, with social media and technology allowing us to sell our privacy for a quick hit of dopamine whenever we get a ‘like’.
“…according to TED, the reward centers in our brains are most active when we’re talking about ourselves. In real life, people talk about themselves 30 to 40 percent of the time; social media is all about showing off your life, so people talk about themselves a whopping 80 percent of the time. When a person posts a picture and gets positive social feedback, it stimulates the brain to release dopamine, which again rewards that behavior and perpetuates the social media habit.”McSweeney, Kelly. “This is Your Brain on Instagram: Effects of Social Media on the Brain”. Now, Powered by Northrop Grumman, March 17, 2019.
But for all the negatives our older generations can throw at the younger for their apparent dependency on this form of dope, I believe that the over-share is responsible for the necessary de-stigmatization and normalization of some of society’s dirty little secrets of the past.
It was only less than a 100 years ago in the 1930’s, that the German government instituted the Euthanasia Program that called for the sterilization, then the systematic killing of children under the age of 3 who showed signs of severe physical or mental disability, in order to create a “pure” and “productive” society.
It might be impossible to imagine that this could happen in today’s Western world, however, echoes of that “lesser than” philosophy have crept back into conversation most recently with the discussion of medical triage as our governments and hospital administrators had to prepare for an overload of the health care system due to COVID-19. Looking to other countries like Italy, who had to make the gut-wrenching decisions to turn people away for care (and inevitable death in many cases) because they had reached capacity, lines were drawn based on age, the likelihood for survival and potential for productivity. In April, some US states had policies that stated that patients with neurological impairments, dementia or AIDS might be excluded from receiving ventilator support. Alabama’s plan wrote that those with “severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.”
Risks to the rights of persons with disabilities during the pandemic were top of mind and the root of much of my (sometimes irrational) fear back in the early months of the pandemic lockdown, but in talking with people in my social circle, it seemed as though no one had really considered that my children might be more at risk than their peers, and it had not crossed their minds that our provinces had even created triage protocols. Stories of the tragic consequences of being disabled in times of a pandemic were highlighted in our neighbouring province of Quebec and British Columbia. These stories served to raise my fears and highlight the need for COVID-19 Disability Advisory Groups and external consultation when drafting these protocols.
In Ontario, it seems that we have come a long way from original drafts seen at the pandemic’s onset in this province, and we now have a protocol – though not yet perfect, according to this excellent analysis: Read – Ontario has a world-leading protocol that all provinces and territories should adopt to be truly ready for COVID-19’s second wave.
This is where you, my readers, get a glimpse of how I speak in conversation.. all round-about and straying from my original point. If you’re still with me, I salute you. You might wonder how I link the topics of social media, disability and COVID-19 back to story-telling?
I sum it up with the belief that through the sharing of stories, we create awareness. And awareness can change and challenge old-rooted and harmful beliefs. It can break discriminatory practices. It can bring voices to the table when policy decisions are being made. It can open up the world for a person who has until then, lived unseen and unheard; lived in the closet; or behind the door of a residential institution; on an ignored reservation; or at the back of the bus. Our world is changing rapidly and not just because of a once-in-a-generation pandemic. It’s time for the story tellers to come out of the woodwork and bring light to the issues that need new perspectives mixed into the conversation.
Using COVID-19’s triage protocol and disability as the example, it’s through story-telling that advisory groups such as Canada’s COVID-19 Disability Advisory Group was established in April 2020 and open letters such as ARCH Disability Law Centre’s submitted recommendations (signed by 204 Ontario organizations and over 4800 individuals) that voices are heard and their perspectives considered by our governments and administrators as they draw up these very important policies and protocols. You can read more about Canada’s Research and Analysis on the COVID-19 Pandemic and Rights of Persons with Disabilities HERE.
I have personally always been very open in talking about the challenges that my family has faced. I am not here to judge or state that a person’s decision to share or keep something private is right or wrong. I can only offer my own perspective of experience.
When I was married to the boys’ dad ‘J’, we were very different when it came to communication styles. He “didn’t feel the need to broadcast” everything (fair enough) and likely resented my openness. I kept some things very close the chest, but I think that who I am is someone who is always seeking connection and authenticity and I don’t believe I can achieve that if I’m a phony or too closed off. It’s just me. But in 2005 when our twins were diagnosed with autism, J surprised me by writing a long email and sending it to almost everyone we knew. He shared the devastating news – at the time it was earth-shattering and such unknown territory – and he asked for everyone’s help. We didn’t have the power of the internet that we have now, to connect with others and learn more about this foreign diagnosis; we were our family doctor’s first patients with the diagnosis and resources were slim, at best. So he asked for everyone to put out the feelers and come back to us with connections to people who could help guide us and to resources we hadn’t heard of. Looking back, it was a defining moment for our family. The diagnosis changed the course of our family’s trajectory, but the sharing of our story opened up doors that would set us on a path that gave us hope and support that we may not have had otherwise.
A very wealthy and successful person once told me, “the best compliment you can give a rich guy is to ask big when asking for money. It will make him feel important”. I laughed at the time, but it stuck with me. I think it’s a true statement as it relates to asking your community for support as well. People often want to help but are often waiting to be asked. When you reach out, it feels good.
When we shared our story, our world opened up. Some local friends collaborated to put on a fundraiser at a friend’s farm, to help fund the boys’ incredibly expensive therapy costs. I will never EVER forget standing on our make-shift stage (a hay wagon) and looking out across the field at the hundreds and hundreds of people who had showed up. So many people I had never met mixed in with all the people we loved and who loved our boys. I saw tears on people’s faces and smiles of support and I saw the true definition of community. I know that on that day and the weeks surrounding it, the sharing of our story had introduced the word “autism” to likely thousands of people who had never even heard of it before. Relationships were created based on a desire to help and support, and an interest in a fascinating developmental disorder. I know of at least 5 kids that were there that day, who have gone on to work in the field of autism for their careers and I like to think my boys played a small part in their decision. That day created a new understanding for people who had seen kids like mine having meltdowns in grocery stores and where they may have been judgmental and harsh in their criticism, they now had a new perspective to consider the next time they saw it happen. The sharing of our story brought us a new compassion from people we had known for years, but who had never before known how to relate to us on an emotional level. It forged deeper friendships with some and also helped us weed out the ones who weren’t cut out for the challenge.
In the years since that first email that J sent out, my over-sharing still continues. I have often grappled with the selling of my family’s privacy, but those feelings are usually outweighed by all of the good it has brought my boys, and – I think, all the good it has brought to those hearing our stories.
I look forward to sharing a lot more stories with you and hope it welcomes you to open up a little yourselves.
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.