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.
In the new year, resolve to 'Do One Thing' for someone else
January 2, 2019
With the turn of the calendar comes the annual pressure of transforming our habits and our lives: the New Year’s Resolution challenge. Most of us have been conditioned from the time we’re young to develop impressive lists of things we intend to do — or do better — in the new year. Lose weight. Exercise more. Amass great wealth. Win the lottery. From the mundane to the miraculous, we’ve got everything covered, and imagine that a simple list could make this year the best one yet.
What if we had to limit ourselves to one resolution? And what if we resolved to “Do One Thing” — not for ourselves, but for someone else?
Businesses and organizations in the Village of Rhinebeck will be committing in 2019 to Do One Thing — and that one thing will not only shape the new year for those involved, but will impact people for years to come.
Here’s the idea: as part of its efforts to become designated an Autism Supportive Community, those who sign on to the Do One Thing effort in Rhinebeck will pledge to make at least one adjustment to their facilities or to the way they operate. The objective is to create atmospheres throughout the village that are more supportive for people with Autism and their families. The One Thing they should do? It might be softening their lighting or piping in gentler music for those overstimulated by loud sounds. It might be creating picture boards at the register for those who communicate through visuals rather than through words. It might be creating a space for folks to decompress, for those who are experiencing sensory overload. Whatever “thing” each participant chooses to do, it will be done to make Rhinebeck more welcoming for people with Autism Spectrum Disorder and their families.
By resolving to each Do One Thing, this group of visionary community members will collectively set an example for communities throughout the country and — hopefully — all over the globe. They will show that simple modifications can make a world of difference for people impacted by the neurological disorder, which presents with communication, social, and behavioral challenges. They will empower people with disabilities by creating settings that are more conducive to buying, exploring, and experiencing. They will enable families to leave their homes and enjoy business districts and public events, where they can shop, connect, and dine with the peace of mind that comes from knowing the community is set up to support their loved ones. Ultimately, these Do One Thing humanitarians will set an example for other towns, cities, and villages to become more sensitive to the needs of the 1 in 59 people diagnosed with Autism.
Yes — by each doing just one thing.
What would it look like if we all let go of those resolutions we will likely set aside by Jan. 15th, and instead resolve to Do One Thing for people with Autism and other special needs? What would it look like to focus on doing one thing to improve the quality of life for someone else - either instead of, or in addition to - improving life for ourselves?
As far as New Year’s resolutions go, for most of us, it’d certainly be far easier to Do One Thing to make our spaces more autism-friendly than it is to give up carbs. And, truth be told: doing something for someone else is by far usually the most nourishing thing we can do for ourselves.
The Gift of Knitting
As children, we’re often the benefactors of gifts passed down by our parents, but have no understanding of their value until we are much older. These gifts often stitch together childhood memories – and help develop a fabric of love for our lives that we can return to time and again as we become parents ourselves.
When I was a little girl, my mom lovingly passed along a gift of her own: she taught me to knit. From Fair Isle and Norwegian sweaters to Latvian and Estonian mittens, she could create just about anything. To see firsthand the simultaneous focus and relaxation of a knitter at work is pretty extraordinary. And while I didn’t often take the time to do it myself while I was growing up, something must have resonated about that experience – because like many traditions we inherit from our parents, I found myself returning to it years later.
When my third child, Owen, was born, I knew I needed an outlet. Owen was a difficult baby from the beginning, and was eventually diagnosed with Autism at age 2 (a neurological disorder that presents with sensory processing, communication, and behavioral challenges.) Like anyone who cares for a loved one with special needs, I often felt exhausted on every level and knew that in carving out time for myself, I would have much more to give to others – most especially, Owen.
Reminded of Mom’s knitting skills and how soothing those memories were, I decided to take action on the need for “me” time. It felt great to channel the younger version of myself – my inner knitter-in-training – by signing up for knitting at a local yarn shop once a week. Owen, of course, may have resented this idea; he often threw my knitting needles in the garage. But it nourished my spirit in a way that I desperately needed.
Not only has Mom’s gift of knitting brought me immeasurable joy since I rediscovered the art form as an adult, but it has allowed me to pay that joy forward as well. One of the best ways I have been able to show my appreciation to the amazing teachers Owen has had is to knit for them. In preschool, I knit hats for his teacher and all the assistants. Another year, I knit cowls for everyone. At the end of one school year, I knit scarves for his teachers.
When Owen was 13, we made the heartbreaking decision to place him in a residential school. While enrolling him will go down as one of the toughest choices of my life, Anderson Center for Autism has been wonderful for Owen and our family. From Day One as we first navigated our way through our application for admission, the staff in the admissions office welcomed us warmly. They guided us throughout each step of the process, almost like Mom had done when she taught me to knit – with a gentle, quiet confidence in their craft. I was so moved by the experience that my first hand-knit gift for someone at Anderson was created for our admissions coordinator. A knitter herself, she really appreciated the time and effort that went into the cowl I made for her, in her favorite color: purple.
And Owen has made progress we never dreamed possible – which means that I’ve knitted more gifts along the way for other members of his team. He learned to use “yes/no” correctly. What a big difference that has made. One of his favorite things to say is, “no please.” Yes, Anderson is great about embedding manners into their teaching. So, his first teacher at Anderson got blue hand warmers.
The following year, I made his residence manager a scarf: another symbol of Owen’s positive experience there. I so thoroughly enjoyed knitting a red, black, white and grey scarf for her. That’s the thing about knitting for me, you can knit positive thoughts and gratitude into every stitch. Shortly after that I knit a cowl for his primary in the house. Bethanny taught Owen so many great skills; it felt so good to knit her a burgundy cowl.
Last year, I had a bit more time on my hands and Owen was moving to a house for older boys. I knit one final cowl for a staff member who had been there since day one. Purple was her favorite color. I also knit a green and white cowl for his teacher. She is also quite amazing and has helped Owen to grow his vocational skills. I also knit a scarf for a former teacher assistant with whom Owen shares a special connection. I also like to knit items for raffles and even knit an afghan for the Gala, Anderson‘s largest fundraiser of the year. That is now over in the Netherlands and framed as art. It is so gratifying to be able to do something I enjoy and raise money for the school that has made Owen’s life–and ours better. Every time I take out a needle and start a project for someone at Anderson, I’m reminded of my son’s progress.
This year I am knitting hats for Christmas. They are a surprise so I have to guess what color each recipient might like. But I continue to knit appreciation and love into each stitch.
And when I consider this gift of knitting that my mom gave to me, I think about each of these projects as timepieces. They represent where Owen has been, and what he has achieved. What could be more meaningful than that?
Recognize and empower people with disabilities
Patrick D. Paul
November 29th, 2018
Beginning in 1992, people from all corners of the globe have recognized United Nations International Day of Persons with Disabilities. This year scheduled for Dec. 3, the theme is “Empowering Persons with Disabilities and Ensuring Inclusiveness and Equality,” a profound message for individuals, families, community stakeholders, and agencies to consider.
The idea of enabling those with disabilities to experience a greater sense of equality and inclusion is also embedded in the United National 2030 Agenda for Sustainable Development, which promises to “leave no one behind” as part of its quest for a more peaceful circle of humanity.
While there is still much to be done, when we consider these goals in context of our own Hudson Valley region, I think we can all feel great pride at how far we’ve come.
It was only about 46 years ago when Geraldo Rivera uncovered the gross neglect, inhumane conditions, and outright abuse occurring in Willowbrook State School, just a few hours away from here on Staten Island. The groundbreaking report broke hearts, but also served as a catalyst for a national conversation about human rights in context of those with disabilities.
Since that time, a movement toward deinstitutionalization has opened countless doors and has given the more vulnerable among us an opportunity to realize their potential and live happy, productive lives.
Here in the mid-Hudson Valley, agencies have provided people with educational programming, vocational training, community integration, and safe, nurturing residential opportunities. We have seen our Dutchess County Government develop and successfully manage a "Think Differently" initiative, which, according to the website, seeks to change the way we relate to people with special needs. We have seen community leaders step up to serve on boards and donors provide private funding. We have seen businesses, organizations, and now, for the first time in our region, an entire community (the Village of Rhinebeck) put time and resources into training required to become designated as official Autism Supportive Environments. We have seen staff so dedicated to the people they serve that they’ve taken on additional part-time jobs to supplement their income — just to continue working in a field known for low pay and high turnover. We have watched people with disabilities secure jobs in small businesses and large corporations, volunteer in food pantries and soup kitchens, and enjoy the myriad cultural and recreational activities that abound in our area. And we have seen their families experience the joy of knowing that their loved ones are, indeed, contributing members of society.
We still, however, have a long way to go. As we commemorate United Nations International Day of Persons with Disabilities this year, I urge you to get involved. Find ways to become more inclusive, to support better funding, and to empower people with disabilities by giving them the equal rights and sense of belonging that they deserve.
Autism awareness part of Rhinebeck holiday events on Nov. 25
November 22, 2018
RHINEBECK, N.Y. — Holiday season in the village begins Sunday, Nov. 25, with a parade, tree lighting and events that include a sensory safe space as part of autism awareness.
The space is intended to provide a joyful time for families who may otherwise avoid the event due to noisy crowds and high-stress situations.
Activities in the village business district begin at 3 p.m. The parade starts at 4:30 p.m. at the fire station at 76 E. Market St. and concludes with the tree light in the Rhinebeck Bank parking lot at 23 E. Market St.
“We’re in the process of turning Rhinebeck into an autism supportive community,” chamber Executive Director Kyra Bonanza said. “So, this year, we’re honoring autism awareness by putting blue lights on the trees.
“There will also be a sensory safe space at the Gallery@Rhinebeck for the families or anyone who feels a little overwhelmed by the crowds, the noise, the lights,” she added.
The effort to have an inclusive holiday is being done through the Anderson Center for Autism, which established the Autism Supportive Environment program to help families overcome the isolation they often feel because it is difficult to participate in special events.
Bonanza said the Anderson Center plans to have staff available near the tree and at the Gallery@Rhinebeck, 47 E. Market st., to provide assistance for families who need items that can provide sensory distractions.
“There are all sorts of tools that are being incorporated like sensory objects for families that need them,” she said. “It’s something that someone can touch or draw their senses to so, if they’re agitated, it can help calm them down. There will also be non-choking hazard treats, which matters to a lot of families as well.”
Activities prior to the tree lighting will vary throughout the village, with businesses and organizations putting together little events to make strolling on the sidewalk festive.
“There will be tables set up by community groups with things they are doing or selling,” Bonanza said. “There will be popcorn, hot chocolate, hot dogs and ornaments. There will be all sorts of hands-on things that people can buy for Christmas presents and decorations.”