I recently turned 47. Having survived breast cancer almost 10 years ago, when my children were just 6 and 3, I don’t experience the angst about aging that’s so common for people my age. Every birthday is a good one; I’m here to raise my kids and the crow’s feet around my eyes are a small price to pay for that gift, with all of its joys, chores, and
I’ve had an awareness of my mortality as something not to be taken for granted from an unusually young age; at 10, I was diagnosed with Type 1 diabetes and told that if I worked hard at managing my blood sugars, I could live a healthy life. I used to marvel at my syringe of insulin and think about how my life couldn’t exist without it. Living long and well with Type 1 diabetes is my marathon and I’m grateful to be well and complication-free these 37 years later.
All that to say, my experiences with illness have given me a healthy perspective on aging. And yet, because I am a mom of a child with an intellectual disability — I feel great pressure to put into place everything my 15-year-old son will need after my husband and I are no longer here. George’s disability — he is autistic and non-verbal — means that although he will continue to learn and grow throughout his life, he will need full-time, 24-hour support in order to take care of daily living skills, including bathing, getting dressed, preparing meals, and so on.
We’ve done a lot to get that care in place over the last few years: My husband and I have set up a special needs trust for George funded through a life insurance policy (very hard to get with my health history and my husband’s age); and we’ve registered him with our county’s department of behavioral health and started to look into housing possibilities and day programs for when he ages out of the school system at age 21. Our plan is to set up a circle of support for our son, made up of aunts and uncles, his sister, cousins, and dear friends who will help to manage his trust and his day-to-day supports when the time comes that we’re no longer here or able to take charge of his support.
We talk about the days when we’ll be gone with matter of factness; we don’t have the luxury of indulging in a midlife or late-life crisis when we have this work to do. I’d rather go to a housing conference for adults with autism any day than waste time looking at fancy sports cars or fantasizing about a major life change.
As my son grows up and I get older, I grow more conscious of how our Jewish community could be offering more supports for parents like me. First, it would help for our clergy, educators, and leaders to learn about what happens to children with disabilities when they age out of the educational system and into the Medicaid system. Parents face enormous stress getting the benefits that they need for their children to have housing, job coaches, and other supports for daily living. Support and encouragement while parents are going through this stressful process is one place to begin.
We need to create more community housing options and work opportunities for adults with disabilities, such as helping with clerical tasks at synagogues and Jewish organizations, or working in our preschools, camps, and kitchens. There are lots of employment possibilities for those who have the ability to work.
Transportation to enable adults with disabilities to attend synagogue and community events is also lacking. Even after young adults move into their own apartments or group-home settings, too often transportation remains the parents’ responsibility so that their children can be a part of the Jewish community. I know of a number of synagogues working on rideshare and carpool options to reduce dependence on parents.
As I look ahead to my son’s future, I want his life and our experience of parenting to be visible and understood. The more that we feel supported, the more that I will welcome each birthday, knowing my son’s future is valued and held with care. n
This blog originally appeared in “The New Normal: Blogging Disability.”