Parenting And Cognitive Disabilities: Looking To My Son’s Future

This week, I turned 47. I had a really beautiful birthday—my husband and I took the day off work so that we could share the day together. After weeks of rain, the spring weather in Philadelphia where I live was finally a perfect warm and sunny so we were able to enjoy lunch at a lovely outdoor café. I enjoyed talking with my Mom and Dad, close friends and family and reading all of the Facebook messages that came through the day. My daughter made me a beautiful painting and inscription and my son George, who is 15 and is autistic and non-verbal, gave me myriads of smiles when I told him it was mommy’s birthday.

Having survived breast cancer almost ten 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 challenges. I’ve had an awareness of my mortality as something not to be taken for granted from an unusually young age; way before my cancer experience, at age 10, I was diagnosed with Type 1 diabetes and told that if I could work 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 is 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 figure out and put into place everything that he will need after my husband and I are no longer here. His disability means that though he will continue to learn and grow through his life (which I know he’ll continue to do), 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.

“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 challenges.”

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—which is very hard to get with my health history and my husband’s age. We’ve registered him with our county’s department of behavioral health and started to look into day programs for when he ages out of the school system at age 21, as well as looked into possibilities for housing. 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 support when the time comes that we’re no longer here or able to take charge of his support. We are very clear that this responsibility won’t fall on his sister alone, whose own future is full of exciting unknowns, but needs to be held by that circle of people who will prioritize caring for George.

For parents like me, facing our mortality is simply another one of the many ways that we’re called to step up and be advocates for our kids throughout their lives. While many of my friends are starting to go through the empty nest transition phase as their children leave for college, it’s really those parents who have children like mine who can relate to and hold my experience. 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 latelife 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 am more and more conscious of how our Jewish community could be offering more supports for parents like me. First off, it would help for our clergy, educators and leaders to learn about what happens to children with disabilities when they become young adults and age out of the education system and into the Medicaid system. Parents face enormous stress getting the benefits that they need for children to have housing, job coaches and other supports for daily living. In my state, Pennsylvania, there are 14,000 adults on a waiting list for their Medicaid waiver—and we’re one of the better-funded states. Support and encouragement while parents are going through this stressful process is one place to begin.

“For parents like me, facing our mortality is simply another one of the many ways that we’re called to step up and be advocates for our kids throughout their lives.”

Many of our communities have come up with creative solutions for low income housing for senior citizens and we also need to do more to create community housing options for adults with disabilities. We could also think about our communities as places for employment for people with disabilities who have lots of different skills. Helping with clerical tasks at synagogues and Jewish organizations, working in our preschools, camps and kitchens—there are lots of employment possibilities for adults in our community who have the capability for working.

Transportation for adults with disabilities to come to synagogue and community events is also lacking. Even when young adult children move into their own apartments or group home settings, too often it remains the parents’ responsibility to provide transportation so that their children can be part of the community. I know of a number of synagogues who are working on ride-share and car pool options so that this doesn’t need to be the case.

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.