I’ve often said that most of the friends we’ve made and the good people we’ve met over the past 22 years have come, in one way or another, from Gabriella. Our community orbits around her.
I chose TIAA over another prospective employer based on her needs, because it was family-friendly and supportive when few organizations were focused on diversity. We selected our town because the school district was recognized for working well with families like ours; that reputation proved to be true. And Gabriella spent eighteen wonderful years at Lakeview School, a place that yielded great friendships. So many amazing people have come into our lives in the past two decades through work, home and school.
But today I’m focusing on a subset that has been, and remains, a vital segment of our care network: the community of other families of children with special needs.
Soon after Gabriella started at Lakeview, Lisa joined the Parents Association. She found camaraderie and understanding among others (mostly moms) undergoing similar challenges. Volunteering for events like Breakfast with Santa and the basket raffle gave her new purpose. Her engagement made her feel less alone as we faced our own complex situation.
I remember our first Pumpkin Carving. Our son Alexander had been to Lakeview often enough that he was well-known as a toddler among teachers and staff. Still, I saw his shock at a knot of so many kids sitting in wheelchairs like his sister, being fed like his sister, experiencing complex challenges like his sister. I had felt no less overwhelmed in my initial visit to school. But we found something else, too. There were dozens of families like ours, comprised of moms, dads and siblings. There was comfort in that association.
Even though Gabriella is now an alumna, we still attend the holidays party and the prom. For a dozen years, Alexander volunteered alongside Lisa at the basket raffle and the golf outing. And Lisa remains a member of the Parents Association, just as she’s joined a parallel organization at Gabriella’s adult day program.
I always admired her involvement with the school, while recognizing the benefits she got from interacting with these other parents. A few years ago, I helped establish such a group in my workplace.
TIAA offers employee resource groups, or ERGs, allowing colleagues to celebrate commonalities and differences in race or gender or sexual orientation. While we had ERGs focused on women, African Americans and LGBT, for example, we had not established one for individuals with disabilities and their caregivers. In part inspired by Lisa’s experience at Lakeview, I got involved with the core team who started our Diverse Abilities ERG.
This provided me with an amazing opportunity to meet caregivers of those with multiple disabilities, hearing impairments, food allergies, and many other challenges. I witnessed the bravery of people who face (often invisible) disabilities themselves. I believe our group brought awareness and understanding to the organization, and I benefited from an environment like Lisa had enjoyed with the Lakeview Parents Association.
Hearing the stories of other caregivers brought a belonging, the courage that comes from knowing that others have overcome something we face, and empathy for those leading such complex lives. Interactions with colleagues suffering from epilepsy and visual impairments helped me better appreciate some of my daughter’s special needs. Then there are extraordinary friends who joined Diverse Abilities because they dedicate themselves through their church or community to helping people with different challenges.
Now I encourage caregivers (and those with disabilities) to seek opportunities to find others with parallel experiences. Organizations exist at schools, at work and close to home. And they don’t have to be formal; the key is in the interaction.
I recognize that not everyone is able to spare the time or energy to become involved today, but would urge them to keep the idea front of mind for when their schedule evolves. And in the meantime, I’ve learned since I started blogging myself that there are many incredible blogs on-line that offer a sense of inclusion, if only by sharing stories and wisdom in which we can see ourselves.