Prosilience #30: Embracing Another Normal
Are you raising a child with a disability? Do you know someone who is?
It’s been a while since I’ve posted…a few months ago I pressed “pause” to focus on the project below. Here’s an excerpt from the book Embracing Another Normal: Resilience Stories and Strategies for Raising Children with Disabilities, which came out earlier this month. I am looking forward to getting back to regular Prosilience writing in the new year!
Nearly 30 percent of families with children have at least one child with a disability or special health care need.1 As part of the Six Challenges project to explore resilience in specific contexts, I teamed up with Kris Burbank, a thought leader, coach, and parent who has deep expertise in working with this community. We have just released the fruits of our collaboration in a new book written for parents raising children with disabilities and anyone who works with and cares about them.
The book distills six challenges that parents raising children with disabilities often encounter, shares stories from a wide range of families, and applies the Prosilience concepts and tools to provide insights and strategies.
The Six Challenges
Drawing on a survey of over 200 parents, these are the six challenges we have explored:
Adjusting to Another Normal
Balancing Needs
Letting Go
Prioritizing Partnership
Managing School
Planning for the Future
Letting Go
Here’s an excerpt from the Letting Go chapter. I believe its wisdom is relevant to all of us, whether or not we are raising a child with a disability.
As your child continues to develop and grow, there will likely be times when you need to step back and give them the space to take risks, encounter discomfort, and learn from experience. The ability to get out into the world as independently as possible, create healthy relationships, and experience activity, excitement, and physical challenge is important to the well-being of all humans. Determining when, how, and how much to let go is one of the most difficult challenges every parent faces; disabilities introduce an additional level of complexity.
Rocking the Boat
“Where are the waves?” thirteen-year-old Andrew asked one afternoon, while out for a ride on our small family motorboat. “This is no fun,” he proclaimed. “The water is too flat.” Even at a young age, our middle child was always more fearless than someone might expect of a person with his profound physical limitations. The higher, the faster, the better for him. Unfortunately, that no longer applies to waves.
In August 2009, Andrew, our family, and dear friends survived a terrifying motorboat accident off the coast of Connecticut. Less than 30 minutes after he complained about the tranquil water, our 28’ motorboat was hit by a rogue wave: unusually large, from out of nowhere, and extremely dangerous. The boat was tossed into the air and violently overturned, immediately trapping Andrew, his nine-year-old sister, and me underwater. When the capsized boat was hit by a second, smaller wave, we were pushed to shore, stuck underneath the overturned vessel with no means of escape, and struggling to breathe. After twenty minutes of near drowning, and steadfast efforts by family, friends, and outstanding first responders, we were eventually rescued from the ocean waters and rushed to a nearby hospital. Everyone suffered shock and minor injuries. But everyone survived.
When I reflect back on that terrible day, my mind floods with traumatic memories: We’re drowning, and my son can’t swim. His life jacket won’t protect him. I can’t protect him. I can’t even breathe. I guess this is how it ends.
In the weeks and months that followed, I spent hours analyzing what happened and why. What did I do wrong? Who could I blame? Experienced boaters assured us that we couldn’t have outrun the rogue wave. But parents need answers, don’t we? So I consulted with mental health professionals to help myself and our family feel safe again on land and at sea. And I reached the conclusion, as many parents might, that I needed to better control our son’s life and environment in order to prevent him from ever again being endangered.
I was trapped with him in that boat. It was my job to save him. I am responsible for him forever. This is the role I am destined to play.
Seeing A New Perspective
“I think you’ve got it wrong,” my therapist suggested, when I presented this challenge to him in tears one afternoon. “I understand why you might think this, but there’s a different perspective that’s much less daunting.” He went on to explain that my role instead might be to help others help Andrew, since I couldn’t always be his everything at all times in all places. “Maybe your job is to share information and training and encouragement to enable other people in Andrew’s life to keep him safe. And to help Andrew himself participate in this as much as possible.”
The Challenge Landscape
We also used the Challenge Map model to think about the specific nature of these six challenges. Here’s a short excerpt from this section.
Compared to the broad range of challenges that people may encounter in life, the ones that parents of a child with a disability face are characterized by two key elements. The first is that these challenges are long-lasting. This means that the Prosilience element of energy management is particularly important. Your skill in protecting, building, and replenishing your personal energy is essential to your overall effectiveness and well-being. The second is that many of these challenges have a voluntary component to them—initiating action early is not required, but it is typically beneficial. This means that the Prosilience elements of Intervening (taking action to influence a situation) and Experimenting are particularly important—they help you take steps to build relationships, create systems and strategies, and envision what is possible rather than just waiting to respond to circumstances.
There are several other collaborative books under way. I look forward to sharing those with you as they come to fruition.
See you in January!
https://www.aecf.org/blog/the-state-of-children-with-disabilities-and-special-health-care-needs