‘Choose Your Own After’ Podcast
Our first full episode comes with a few surprises. I thought I’d take advantage of a visit with my son Jake and I asked if he would host an interview with his Maman. It also comes with lots of technical bumps; but just as we’ve been saying all along – Willowjak is about authenticity, not perfection. So when we dig deeper for more vulnerable storytelling, it comes with some warts. We’ll get better!
Where Stacey Haley’s Story Begins
WillowjakMama’s family storyline can be traced HERE on my About page, but when asked where it all began, I start with the birth of my three boys; Jake and his twin brothers, Owen and Will. We were a young family that had seemingly escaped any negative outcomes at their birth, and like other families, were looking forward to the future. After the twins were born, Stacey had expected to return to work after her maternity leave and assumed the boys would go to daycare. But when it became apparent that something “wasn’t right” and the twins were not adjusting to routine, communicating their needs or connecting with the people around them, it became increasingly obvious that there was no one would be willing to take the boys into their care and then began the pursuit of a medical explanation for why the boys were not adjusting or hitting their developmental markers.
Owen and Will were diagnosed with Autism at two years old and it felt like the rug had been pulled out from under us. In 2005, we didn’t know anyone with this diagnosis and at the time, our doctors didn’t either. I was handed a book titled, ‘Let Me Hear Your Voice’ by Catherine Maurice and a piece of paper that had some phone numbers on it, for who I could call to get more information about possible supports.
In retrospect, the book didn’t do me any favours. For a parent who had no real understanding of this developmental disability, the memoir of this family’s urgent and aggressive battle to save their child from a life of despair (my present-day interpretation) was incredibly overwhelming and anxiety-inducing. It set the tone for our plans looking forward and its core message was reinforced by the diagnosing doctor’s words to us: “it’s believed that a child’s brain can be re-wired up until the age of 6, so you still have time if you can access therapies to help them”. I entered this period in our lives with a dark and ominous, ticking clock that suggested my children would never have a chance at happiness if we couldn’t figure this out in the next four years.
(You can read more about that time ‘Diagnosis – the Day Life Changed‘).
I plunged into a dark place in my Mama-brain and had a really difficult time keeping focused on the present, because I was too busy trying to put MY worst fears on to my boys. I felt so sorry for them because I imagined a future of loneliness, of sadness and complete dependence on others for everything. It took some time for me to realize how messed up that thinking was. And for any parents out there dealing with a new diagnosis… there are MILLIONS of stories out there with MILLIONS of happy, well-adjusted, unique autistics who have exceptional things to contribute to this world who would tell you there is nothing that needs to be changed or fixed. We’ll save this mega-topic for another episode.
Community Changed Everything
I’ve always said that the diagnosis was the defining moment, but I was wrong. Our circumstances may have changed the trajectory of our lives, true. But what changed the temperature.., what made me realize that I had a choice in how things could feel about it all, was when our community rallied behind us. Friends, family, co-workers and strangers came together to support us in ways we never dreamt of. And THAT only happened because we were vulnerable and shared our story. We let people in and they wanted to help. Knowing we didn’t have to shoulder all of this fear on our own is what released it all for me. My mindset changed on a moment where we stood on a makeshift stage, in front of hundreds of people who were there to raise money for therapy for the boys and we all felt the love. It buoyed me and kept me energized to seek out new solutions and not fall back into that scary dark place. And thank God for that because it opened up the space to see that I had been doing a disservice to my kids. No one knows what the future holds for any child. Anything can happen. Everyone has potential. And I can’t be the one to decide or judge what happiness looks like for anyone else.
Will’s Dark Days After a Move Across Country
In 2012 our family was living in Calgary, Alberta and we made the difficult decision to come back to our home turf in Durham Region, Ontario. However exciting the move was for Jake, his dad and I, it was incredibly confusing and scary for Owen and Will. Uprooted from the only life and people they had really known and then plopped into a school placement that didn’t meet their needs (at all), put Will into a tailspin. At the time, he was still very much non-verbal and his overwhelming frustration and anxiety presented itself in his OCD and aggression. Life became un-manageable; Will was so aggressive that he wasn’t able to attend school; he was destructive and hurting his caregivers and EA’s and we had run out of ideas of how to turn things around. I remember calling an emergency hotline and speaking to a person, whose only suggestion was “well if he’s out of control and a danger to others, you could bring him to an ER and they can sedate and restrain him to a hospital bed”. Nope. Wasn’t gonna happen. But when that’s your last resort, you really start to panic and realize that no one else is going to figure this out for you.
Something clicked and I thought back to the first time I felt STUCK with no options.. back to when the boys were diagnosed. What got us out of that dark time, was a change of mindset and connecting with community again. I drew from an idea that was presented to me by a social worker we had worked with named Anna. She introduced the idea of building a Circle of Support around the boys and so it was with this in mind when I invited a group of our friends and family to meet up together to brainstorm the issue and come up with some ideas to help support Will. It was exactly what we needed and things turned around from some of the ideas generated at that meeting.
Single Parenting is Not For the Weak
When I got married and had kids, one thing I never imagined was that someday I would be navigating this parenting gig on my own. But when my marriage dissolved in 2014, so did the partnership I thought I could count on, to take on the daily challenges of caregiving three sons; and two with some complex needs. It also forced me to lock in on working full-time again, after having been a stay-at-home mom for nearly a decade. Besides the exhaustive day to day of caregiving, I watched all hope of any semblance of a personal life post-separation evaporate because I had the boys 99% of the time. This has been a difficult pill to swallow and I slowly lost myself and any dreams I had for myself, by believing that my needs didn’t matter as much as those of my boys.
Find me a parent (especially a single one) who is caregiving a child with a severe intellectual disability who HAS all the money in the world and a solid plan for what will happen with they graduate high school. Or when they themselves get old and tired and can no longer do the personal care and carpooling and chasing. Find me a parent who doesn’t wake up in a cold sweat from a nightmare, with the immediate fear running through their mind that they will die before their child and there is no one to take over for them.
I’m not the only one who lives that nightmare and the fear is paralyzing. The isolation of caregiving can be as equally damaging. Ultimately, when you can’t find a way to chip away at those two impossibly gargantuan challenges, you start to believe there is no hope of ever figuring it out.
But here’s the thing. You can get unstuck. You need to trigger that switch in your brain that got a little rusty and forgot that it was capable, and turn it back on. Because when you flick the switch, you remember that you’ve always got a choice. You just need to brainstorm. But above all else, at least in my experience, the key to turning things around is to make yourself vulnerable. Share your stories and let the community back in. The answers will start to shape themselves. The ideas will start to spark. The helping hands will come. You’ll find your Willowjak community and realize that you can start dreaming again.
Read more about single parent caregiving in ‘Extend Some Grace to the Caregivers‘.
Episode 2 of today’s podcast was directed by Stacey, interviewed by Jake Haley and produced by Liza McClelland. Sound effects provided by William Haley. As a post-script, we respectfully beg of you to forgive our audio glitches and exhaustive babbles. As promised, we’ll never be perfect, but we’ll always be real.
Go take a listen now! See you next week!
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.