Recently my employer, Jewish Family and Children’s Service of Minneapolis, invited a guest speaker talk to our staff about Social Security and the options about when to file. It was full of information on which to make an informed decision about retiring and collecting Social Security and Medicare.
As I was relaying this information to my husband Rick it occurred to both of us that thinking about our retirement was somewhere on the “C” list of our priorities. It is not just the financial mountains so many of us have to climb as a result of the last five years that eliminates any thoughts of our retirement. We are also still in the child rearing years. We are the proud parents of a son who has a disability, and the financial family needs means that the word “retirement“doesn’t appear in our vocabulary.
My husband Rick and I are often confronted by the “Parent Developmental Lag” experienced by many of us who still manage portions of the lives of our adult children who have a disability. While our peers are thinking about retiring at 62 or 66 or 70, we are thinking about how we will pay our gargantuan Health Savings Account deductible that automatically clicks back to zero each January. When you have a child who qualifies as a “disabled adult” on your insurance plan, who is in school and works only eight hours a week, parents are on the hook for covering co-insurance and high deductibles that can devastate a middle class family.
While our peers are selling their homes once their mortgages are paid off and planning to downsize, we are wondering how long we will need to keep the family homestead with enough bedrooms to accommodate our adult children.
Our children often don’t launch at the same rate as their non-disabled peers.
Many of us parents have raised our children who have disabilities to be as independent as possible. But our adults services world hasn’t caught up with our children yet, so we cannot just spring our kids out into the world hoping that they will manage on their own.
We’ve been their dependable ally for so many years. Many of my Baby Boomer peers who have children with autism or Down syndrome or learning disabilities or mental illness know is that the road to living independently has many more challenges for our children than for our neurotypical children.
Time simply ticks by and before you know it, your child isn’t 18 anymore. They are in their late twenties or early thirties and you are starting to panic. You stay awake at night asking yourself “What is going to happen to my child when I no longer can care for them? Will they miss a window of opportunity to find a job that pays a living wage? What happens after they graduate from a community college, technical school or four year university? Is someone there preparing them for life outside of academia or their day program? How will they get groceries? Who will be their friends? Will they ever live an ordinary life?”
When you have a child who has a disability, you don’t think about things like retirement. You hardly ever get to punch out from the demands that still arise. We are the gray haired moms and dads who still monitor our children’s’ activities and say things like “It’s midnight, don’t you think you should go to sleep?” (Why are we fifty and sixty somethings still awake at midnight?)
I was at a special Shabbat morning service for Jewish Disability Awareness Month at one of our local synagogues, Adath Jeshurun. There were many parents of young adults with disabilities at services. Some of the children attended with their parents. Many of us have known each other for years, and have traveled similar paths. We realize that our time and energy centers around supporting our children. We pick them up from their activities because they don’t drive or qualify for accessible transportation. We remind them to get off of the computer, and wish for the millionth time that we knew how to motivate them so they would take charge of their own lives instead of us having to find the resources that could help them do just that.
Nevertheless, we are blessed to have our children in our lives — we love our children, and just want for them the things they (and we) have worked so hard to achieve. A safe place to experience life, to hang their hats, to live.
Fortunately, times are changing for our children and for ourselves.
There is a sea change afloat as Jewish communities become aware of the number of children and adults who will need support in order to live as independently as they are able. Every February for the past five years Jewish Disability Awareness Month is held in Jewish communities across North America. The result of programs, events, services, virtual book clubs and webinars is that communities are much more aware that parents need a supportive community to assist them in developing meaningful lives with these young Jewish adults. There is a sacred responsibility that our Jewish communities must honor. Caring for all people with disabilities in the Jewish community is not just up to the family members. It is up to all of us.
The key word is “Jewish.” Just as our communities have provided support to older adults they are realizing that living a Jewish life and having a Jewish home of one’s own is an expectation and not just a dream. This is one of the most persistent dreams that we share for individuals and families living with disability. .
Five years ago in Minneapolis several parents organized a meeting for parents of teens and young adults with disabilities. The goal was to see if there was interest in Jewish housing for people with disabilities and what people wanted it to be. Over 30 families attended the meeting.
There were common themes. Most parents were caregivers to children still living at home. They voiced how important it was for their children to live in a Jewish environment with other Jewish adults. They expressed the need for life planning services and case management to help these adults reach their own hopes, dreams and potential. Finally, all of the parents stated that they were desperate for reassurance that there would be a Jewish component to care for their child once they were no longer to care for them.
One of the organizers of this meeting, Linda Bialick, the mom of an adult daughter who has a disability, co-founded Jewish Housing and Programming (J-HAP). Linda is as dedicated, passionate and determined a parent as you would ever meet. Her daughter is now 25, and thanks to the hard work that this caregiver mom has done since that day five years ago when 30 families met, parents like those who attended the JDAM services at Adath Jeshurun can rest comfortably knowing that soon their children will live independent lives in a safe, well-managed Jewish environment. .
J-HAP will provide a safe place to live independently with kosher food, close to transportation, shopping, a library and restaurants. State of the art technology will enhance security. There will be a place for the Jewish community to gather for services and events.
Linda and Jen Lewin, the first Executive Director of J-HAP as well as the board, have worked tirelessly to build relationships with all of the Jewish organizations so that they can work as partners to meet the needs of the adults in the community. They have successfully worked with state and local government agencies and authorities and have their full support.
In just a few short years, parents will find that elusive peace that has prevailed for so long. As we watch our neurotypical children and our friends children leave the nest to make a life of their own, we are full of hope that our children who have disabilities will have the advantages they need to build the life they wish to have.
And maybe, just maybe, when we parents manage to let them go, we will join the legions of our Baby Boomer peers and start collecting our Social Security checks just like everyone else. We can sell our houses and enjoy a more relaxing lifestyle.
I can guarantee, however, that inside all of our hearts, we will feel the joy and know the blessings of caring for our children no matter how long it takes. Knowing that the arms of their Jewish community is wrapped around them is our dream.