2015 has been a year of accomplishment for our daughter. She has been employed at The Prospector Theater three days a week as an usher and gourmet popcorn baker. Her volunteer work at Pegasus’s Rider’s Closet, a charity founded by Georgina Bloomberg, remains a steady once-weekly endeavor of shinning boots and folding riding clothes. She attends music, jewelry-making and art classes in the evenings with SPHERE, the primary social netting of her week. She attends a day program on Mondays at Ability Beyond which is the agency that provides most of the services that support our daughter’s life. She continues riding weekly with Pegasus, even doing the unmounted program through the winter. Her week is crazy busy.
(The financial breakdown of all these activities is that her Pegasus riding classes and SPHERE programs are supported by her parents as well as vacations and membership at the town recreation center. That’s where families whose adult children receive government subsidies are pressured to find ways to provide additional support. For every dollar our daughter earns at The Prospector, the government reduces a portion of her funding. The number of hours she can work is also limited by her entitlements.)
The on-the-job training that The Prospector provides their employees is extraordinary and our daughter is reaping great rewards. She is more organized, articulate, stimulated and mature. This is evident to us when she comes to our home for holidays, the occasional weekend or when we all travel together. She takes pride in her new skills and her entire being radiates self-confidence and self-respect in a manner heretofore unseen. We bless Val Jensen, the founder and heartbeat of The Prospector Theater and hope that this model becomes an inspiration for the employment of adults with disabilities nationwide.
On another front our daughter’s relationship with her apartment-mate has strengthened – they have been together for 4 1/2 years – with the help of a psychotherapist (paid for by parents). Her 24/7 staffing continues, a product of both ladies LON (Level of Need), though Connecticut DDS (Department of Developmental Services) is cutting back services statewide and allocations are constantly being reviewed to make sure this high level of support is still needed. It is.
Another challenge that is endemic to the system we depend on for support is the predictable turnover of residential staff – as younger staff move up Ability Beyond’s organizational ladder or away. These changes always include a learning curve and transitional period for staff, the ladies and their families. Ability Beyond is thoroughly professional, caring and skilled – it is just the nature of the beast and will remain a feature of our daughter’s life.
It will be five years this June, 2016 since our daughter returned from Riverview School on Cape Cod to start her adult life in Connecticut. (She returned to the school in August for their biennial alumni reunion and the bonds with schoolmates and faculty were emotionally powerful to witness.) This August, 2016 will mark five years since she moved into her home in Ridgefield, CT. Her life is richer than we ever dreamed possible twenty plus years ago (she turned 26 in November). Yet what is also true is that with all the improvements our daughter remains a special needs adult. And we remain vigilant parents and facilitators still. On at least a weekly basis my mind explores who and how and on what schedule will another pair of vigilant eyes check our daughter when mine are permanently shut. Folks may think this is morbid, unless they too are parents of adult children with disabilities.
That’s how it goes – and we are in the company of all the parents of adult children with intellectual disabilities. I see older parents like ourselves scramble to figure out who will oversee their adult child after they are gone: a sibling; a cousin; an agency. At the Riverview School Reunion I sat in a forum with Head of School Maureen Brenner and other parents as we shared our resources, our joys and worries of parenting our adult children. I think most of the parents agreed that the years our children attended Riverview were perhaps the most peaceful and joyful in our parenting journey. We knew our children were safe, learning and having fun, most of the time – while our hands were no longer holding on to the seats of their bicycles.
There were a couple of themes I plucked from our weekend back at our beloved Riverview. The first, most vivid was that of Expanding Friendships: the warm embrace that the school offers to its alumni who range in age from 21-50 plus seems to regenerate itself each visit. Former students greet each other with shrieks and jokes and solid hugs – as with all reunions – but these adults are less self-conscious, less burdened by a need to parade their accomplishments. There is a profound sincerity and uncompromising joy which amply spreads itself around. This is our daughter’s second reunion since her graduation from Grow, Riverview’s post-secondary program, in 2011, and at each event she meets alumni, new to her, who she then friends on Facebook – creating an ever growing peer population though her campus days are over.
And that is the other theme: Loss. As we drove out of the campus that Sunday morning, our daughter expressed sadness and irritation at not being able to return to Riverview and live that campus life again. “I know that I have to live in Connecticut but I wish I could live on the Cape.” It is always hard for me to bear anything sad or uncomfortable for our daughter. I am a compulsive, often impulsive, fixer upper of emotional distress – even chose a profession that rewards me for such efforts. But after the anguishing feeling that I cannot fix this one, I tapped into the professional side of my brain and, voila. Hey this is just like anyone who re-visits those halcyon days of youth and campus life where your best girlfriends and funniest cutest boyfriends are in the room down the hall or the dorm across the green. Folks with special needs have normal feelings – normal loss. Typical feelings – typical longings. Are their feelings therefore more painful to hear or bear because they have special needs? Well, maybe, but actually they shouldn’t be – because we need to respond with the balance and awareness of the phases and stages of life that accompany everyone, all our children and ourselves – so that we can aid them in their growth and their wisdom. And so I did.
After all, the safest places in life are never forever – a mother’s womb, a Riverview School. Growth, change, loss, growth, change, loss, growth.
And the final theme: Alchemy: At the Riverview forum parents from states across the country described what their individual adult children were involved with – some living independently, some still with their parents, some in independent living situations. All manner of living and working, not working, socializing, not socializing, some isolation, some getting married. One enterprising mom has created a continuing education program for her daughter and others in their surrounding community. One of the parents presented their work with Head of School Maureen Brenner to create a very informative listserve that is available to all Riverview alumni families that disseminates and shares resources and inquiries and information on pending legislation.
What has crystallized in my mind over the last several years is that when the public sector of government oversight and funding interfaces with the private sector of creative dedicated philanthropy, the Val Jensens and Georgina Bloombergs of the world, the families that founded SPHERE, Ability Beyond, Pegasus – only then can adults with special needs attain a full life – government support, meaningful employment, opportunities to give back to their communities, a social network of friends and safety. Then something called Alchemy occurs- “a seemingly magical process of transformation, creation, or combination.” That’s the ticket – for a full life for our adult children with challenges it’s the mix that provides the most.
And now our daughter is 26 – our son almost 29. They are both grownups. One helps to run a successful business. The other works in a movie theater – each adding sparkle and skill to their workplace. One supports himself. The other is supported by government assistance and the philanthropy and dedication of the not-for-profit world. What is common to both as I look back on 2015 – each of them is thriving – though one is far more dependent on the kindness of the universe and the other, well, not so much. That’s the reality of special needs.
There is a new reality down the road. The Prospector Theater’s mission is to train and prepare their employees for their future launch to other workplace settings. Growth, change, loss, growth, change, loss, growth. When and where that might be – remains to be seen. Fingers crossed our daughter will be ready.
Thanks for listening.
©Jill Edelman, M.S.W., L.C.S.W. 2016