An Epiphany for the Ages
January 5, 2019
Like any art form, great writing can evoke emotion, enlighten, and even spark an epiphany. This morning, it was a New York Times article that touched me so deeply that I’m thinking about everything differently now.
For years, I have been consuming stress as if it were a staple in my diet. As mom to Owen, who is among the 1 in 59 diagnosed with Autism Spectrum Disorder (Centers for Disease Control, 2018), I’ve been led down entire roads of stress working to “cure” him. Therapy, vitamins, doctors, Autism studies – the list goes on and on – a list that no doubt made the childhoods of my older two kids difficult. Owen’s needs dominated our days. Whether we were fully engaged in therapy, managing difficult behaviors, or just making those simple trips to the store or out to dinner (transitions which can throw any person on the spectrum through a loop), the challenges were built into every experience.
By the time Owen was 13, we were faced with the difficult choice that many families walking our path must make: whether to consider residential treatment for our son. We explored Anderson Center for Autism, and despite the painstaking decision at hand, we knew that a campus designed to maximize his strengths, support his development, and protect his safety 24/7 was the right thing to do for him. Over 2.5 hours away from everything we knew in our home community was a place that could help him realize his potential while supporting our peace of mind as well. And little did we know just how amazing Anderson Center for Autism would be for Owen and for our family.
We jumped right in. We wanted to support their vision and do our part to take any adversity we had experienced and use what we had learned to help others. My husband became Treasurer of a then-newly-formed parent group, Anderson Family Partners (AFP). I was recently named President of the same group and he moved into a role as Chairman of the Anderson Foundation for Autism Board of Trustees. We actively participate in supporting Anderson through advocacy, fundraising and family support.
Through it all, we were coasting along, living our lives – but in part because of the energy generated from volunteering for Owen’s program, we were also gaining true quality of life. Ironic because the organizational mission at Anderson Center for Autism is about giving people with Autism the highest quality of life possible – but what ends up happening is that there is a ripple effect. When children are happy and productive, their parents can tap into their own unlocked potential as well – and the entire family ends up moving forward, taking a new path that is not lined with overbearing trees of stress but rather has some light to it.
After my mom passed away two years ago, my father, who has dementia, hit a new level of difficulty and we had to place him in a nursing home – yet another painstaking decision in my life (and an example of what the ‘sandwich generation’ really endures in their quest to support both the young and the aging simultaneously). Having made our own move to Rhinebeck to be close to Owen and his residential program in the neighboring town, we did the same for Dad. He is now just minutes from our home, in a place that can support his needs. But with that move came increased stress levels. Stress that had already started to rise after mom’s death began to compound, growing higher and higher. All of the sudden, I found myself back on that road of stress, often feeling overwhelmed by its shadows.
There isn’t a “parent“ or “children’s” guide to provide an understanding of what to expect when caring for an elderly parent. Dad was often ill with heart failure and was dealing with challenges related to his COPD diagnosis for the first month or the first year – it’s demanding. It’s hard to meet his needs, so the needs of my husband and children and me have tended to fall away.
I have long known I needed to find a way to manage this, and couldn’t figure out what the answer might be.
But as I read the article, How to Crush Your Habits in the New Year with Science “ by Susan Shain (December 31, 2018), a light went off. Her words made sense to me; they moved me. They evoked a sense of empowerment – an idea that if I approached things differently, I could lay out a new path that kept stress on the sidelines and allowed the light to shine on me. It was an epiphany.
We all know that taking care of ourselves is the best way to do this. And every year, I resolve to eat better, exercise more and drink less. What I didn’t realize before, though, was that I had a set of tools ready to be put to use that could make these resolutions a reality. The article says “research shows that rather than “breaking” bad habits, you should attempt to transform them into better ones.” To do this, you need to recognize the trigger and reward and then find a new behavior that satisfies most.
For parents with children with Autism who feel like they could have honorary doctorates in Applied Behavior Analysis (ABA), the message resonates in a big way. ABA is the only “scientifically proven“ method for treating autism. All of us, at one point or another – or more often – have tracked ABC data, antecedent, behavior and consequence. Having used ABA for the last 17 years with Owen, it’s a concept I understand well. Seeing the parallels within this article between what I’d already been practicing with my son and what I could do to take charge of my own life, the wheels of my brain began to roll. I thought of what the antecedents or triggers were for the behaviors and habits I want to change. I began to consider consequences – and even better, rewards. Ah, the word “reward” has such a positive connotation!
The epiphany was energizing.
And while I didn’t go to the gym today, I did take my dog for a walk and I know that the best days of the year, where I feel most empowered, are yet to come. Look out, 2019 – my plan to transform my life is science-based, and my knowledge level is deep and vast thanks to my journey as a mom of a child with Autism. There’s a bright path ahead, and I’m ready to walk it.