Soon after my 60th birthday, I became more sensitive to the truth of my mortality. The question my father asked me days before he died kept echoing in my head: “What will happen to Aaron when you’re gone?”
My son Aaron is 23, nonverbal and autistic. When I am gone, he will need a home, a constant stream of supports, and a community that cares about him and for him.
"Home and community" are hot topics in autism today, as federal policy threatens to sharply restrict congregate options where adults like my son can live and receive services. But for Aaron and many with severe disabilities like his, “community” is a many-layered thing, and just living in a solitary apartment with a caregiver for him is not community.
The next layer is the micro-community of family, friends and helpers that share Aaron’s life. During dinner parties Aaron circles the table several times, observing the guests as they pour red wine into their glasses or reach for another bowl of rice. He smiles and sometimes claps. When friends visit, he greets them with a clap and sometimes a hug. While Aaron loves his quiet spaces he also thrives around company and a likes a social whirl. He is part of a larger world with the energy and nourishment of social contact, and where he is accepted and can be himself. This layer of community is crucial: studies show that social and emotional support is a significant predictor of better cognitive function and a protector of functional decline as one ages. This is as true for Aaron as it is for the rest of us.
A few years ago I met Larry Grotte, the father of a son with special needs, who asked me the “after you’re gone” question. I could no longer place the topic on the shelf hoping that the answer would jump out at me. Peter, Larry’s son, is non-verbal with a long list of disabilities. In the process of discussing a solution to our mutual quandary Larry and I began to design Rident Park, a home for our sons, where they would live and enjoy the warmth of all layers of community after we are no longer on this earth.
As we plan Rident Park, we intentionally take the multi-layered approach, because that is the human norm: private spaces and homes, opportunities for social engagement with a broader group of friends, supporters and caregivers in a safe enclave environment, and ample everyday access to the riches of the local community at large. For those with severe disabilities who lack ability to create their own micro-communities or interact on their own in the macro-community, intentionality of design and operation is imperative.
For adults like our son, there is no one simple answer or approach. As we plan for their individual needs, we hope all families will ask questions and seek answers that will meet all layers of community needs for their adult children. We must build communities that are structured to provide care, love, support, and healthy alternatives. All adults with disabilities deserve to live in community through their lifespan.
Irma Velasquez is a long-time member of the Autism Society San Francisco Bay Area board of directors, a mother, artist, writer, life coach, and entrepreneur. She and her husband Sherman Chan founded the school Wings Learning Center in 2001.