Hi I’m J, also known as Joan. I’ve sporadically posted writing on Grace and Dirt, my blog, for the past decade. I chose the name of the blog to address my ongoing effort to cultivate grace and acceptance through a life that is messy and chaotic. I have two kids and the younger one has autism; but it is not a mom blog or an autism blog, although issues related to both often take center stage. I also write and care about other topics that put my life in a bigger context: social justice and public policy, how we find ways to support, include and value everyone, especially those who are less visible or more vulnerable; culture and religion or however else we find strength, meaning and resilience.
I’ve focused on that bigger context in my professional and creative life as a “slash person”: a researcher/writer/policy wonk/activist/ facilitator /performer committed to increasing social equity: things like making sure everyone has access to a quality education, gets fair representation in the criminal justice system, and has the opportunity for safe affordable housing and good health care.
My son V is at the more severe end of the autism spectrum. In addition to intelligence, humor, curiosity, a joyful disposition and perfect pitch – he has limited verbal and social skills, severe impulsivity and hyperactivity, sleep and sensory processing disorder. Constant hypervigilance is required for his safety and well-being. Consequently, I’ve added new slashes: caregiver/administrator/scheduler/advocate – that continue to open up my world and give me firsthand knowledge in new areas. Where throughout my career I have worked on behalf of underserved communities: people of color, new immigrant groups, low income neighborhoods, I’ve expanded my experience to encompass other underserved groups that my family is a part of based on age, disability and mental illness. I’ve also experienced how these categories intersect.
As a consultant I was hired for my expertise in community engagement and multi-sector partnership building. In my years as a caregiver I’ve become a first-hand expert on social isolation and loneliness and how that impacts health and well-being. While maintaining a blog hasn’t done much to curb my sense of isolation (which is why there have been such long lapses where the site lay dormant), I still think it’s a valuable tool for telling my story and opening a window to the stories of so many other wonderful people I’ve met on this journey, people who often remain in the shadows rather than in the spotlight. I continue to believe in the power of sharing our experiences to help increase understanding, acceptance and inclusion.
A New Chapter: The Cliffhanger Chronicles
My perspective right now is from the precipice of a daunting cliff which awaits our family in a few years. “Falling off the Cliff” in the disability community refers to what happens at age 21 or 22, when the guarantees of an education under IDEA [Individuals with Disabilities Act, a federal law that requires all students with disabilities are provided a free appropriate education] ends and young adults lose the specialized help and structure they’ve had for most of their lives, leaving parents scrambling to find services for their adult children. Research, what there is of it, paints a dreadful picture of what we face (most of these figures come from studies at Drexel Autism Institute and Johns Hopkins):
- Of all the funding that goes to autism research less than 2% goes to adulthood or aging, even though that’s where individuals on the spectrum will spend most of their lives.
- The surge in autism diagnoses for children has led to a huge increase – it’s been called a tsunami – in the number of young adults aging out of services every year, with overcrowding or long waiting lists for good programs that provide the basics to live a comfortable life: housing, job training, and social opportunities
Of families trying to access services for a loved one post-cliff, a majority say that it takes great effort to find them appropriate services. Many parents often end up devoting most of their lives to fighting on behalf of their children. Nearly 30% of individuals never receive any services after high school ends.
- It’s extremely difficult for most families to get the resources they need, especially middle- and lower-income families who need funding the most.
- Services for the roughly 30% of individuals [like V] who require constant,ongoing supports are even more difficult to find.
I know this all sounds dire, and in many ways it is. It also can be hopeful, because for all the people who retreat or give up when faced with a crisis, there are many more who are empowered to come up with new solutions or fight for change. Our story and that of each affected family is unique, and yet there are common themes that cross boundaries among us and beyond, to other people with ongoing health or financial issues that add obstacles to finding the good life we all yearn for and deserve.
Thanks for listening to our story.