In one
of my all-time favorite movies,
Shawshank
Redemption, Red reads a letter from his friend Andy, who escaped from
prison after years of being punished for a crime he didn’t commit. In the letter Andy says: “Hope is a good
thing, maybe the best of things, and no good thing ever dies.” The letter
encourages Red (if he’s ever released from jail) to join his escaped friend
Andy in Mexico and start a new life.
While I love the line, (and it’s very touching in the film) I’m not sure
these words always ring true in real life.
While having a positive and hopeful attitude is usually better than
being pessimistic, quite often bad things happen, problems don’t resolve, and
staying hopeful is NOT the best way to cope.
For
example, take my husband, Henry, a lawyer, who tends to be pessimistic. In order to defend many of his clients, he
must focus on the weaknesses of a case more than the strengths, if he wants to
create a winning argument. Do you want a
hopeful, optimistic lawyer, who says things are going to fine for you? Or would
you prefer an attorney who worries about protecting you and digs deeply into every nook and cranny of the
law? Hint: Think of Larry David’s reaction on
Curb Your Enthusiasm when he learned his divorce lawyer was Swedish
(instead of Jewish). “Oh no,” he lamented, “my wife’s going to get everything!”
All of
us empty-nesters try to set a positive, hopeful example for our millennial
children, particularly when they go off to college. While most kids won’t admit to being
ambivalent about leaving the family nest—excited AND apprehensive—parents also
have mixed feelings about letting go: pride, worry and sadness, among
others. Still, it’s much easier to be hopeful
and excited about college—a kind of bridge between childhood and adulthood—than
it is to remain hopeful when that young adult graduates from college and has
difficulty finding a first job. Many parents have fond memories of their
college years, and unhappy recollections of their first jobs (especially female
baby boomers like me). For parents who happen to have a child with a
disability, (like my daughter Sarah on the autistic spectrum), hope will only
take you so far. Hope IS a good thing—and perhaps the best thing—when educating
and treating a child with learning disabilities. But what happens to hope after a young adult
with autism graduates from college?
Sadly, my personal experience (and that of friends with kids on the
spectrum) has been that hope disintegrates for both the parents and now
grown
children.
All of
society’s safety nets which are supposed to assist families of young adults
with disabilities are woefully inadequate.
Parents are buried in paperwork and a labyrinthine bureaucracy with government workers whom I’d like to think are well-intentioned (even if
overworked, under-funded or incompetent).
There’s even a whole new language of terminology and acronyms for
frustrated parents to learn: ACCES-VR (Adult Career and Continuing Education
Services – Vocational Rehabilitation), OPWDD (Office for People with
Developmental Disabilities), MSC (Medicaid Service Coordinator), SEMP
(Supportive Employment Programs), Community Habilitation Services, etc. and the
list goes on . . . . Oddly—and
mercifully—securing disability payments, Medicaid and Social Security for Sarah
has been much easier and faster to do than providing her with life skills
support or an actual job. Wouldn’t it be
kinder and less costly for society to offer job support and employment
opportunities to people with disabilities instead of mailing them millions of
dollars? Or has society abandoned all hope of creating a truly inclusive and
diverse workforce? Sarah graduated from
Pace University over a year ago and still has no job, nor has she received a
single hour of life skills support despite following up with months of phone
calls.
Nowadays
coping substitutes for hoping. Sarah
keeps busy: with friends, the gym, her theater group, and rehearsals for her
upcoming film,
Keep the Change. I’m still persevering with the various
government bureaucracies. My advice to all parents of kids with disabilities is
to start submitting all that paperwork for housing, job support, life skills
etc. when your children are in high school. I failed to follow that friendly
advice for my own daughter because I couldn’t stop HOPING that Sarah would not
NEED government support. Foolishly, I hoped that somehow through maturity and
continued brain plasticity Sarah would become capable of much greater
independence than has turned out to be the case. In my defense, I never believed seeking
assistance for someone who truly needed it would take nearly as long as it has.
Sometimes coping means I must
continue to advocate for Sarah and be “the squeaky wheel.” However, 24 years of
advocating and “squeaking” has been exhausting (for the wheel). Now I worry about what will happen to my
daughter when Henry and I are gone. Will
her twin brother who lives on the opposite coast step in to help her in the
event of a problem? Will he even know if she has a problem? Or will he be busy navigating challenges in
his own life? I want to be hopeful, but
hope—as Henry often reminds me—is not always practical or realistic. Worrying about both of my adult children,
(flown from the nest, or mostly flown, in Sarah’s case) only results in
migraines, indigestion and insomnia.
What’s the solution? Letting go,
moving on, “que sera, sera.” My
mother had a much easier time saying goodbye when I left the family nest than
I’m having with the double separation of my twins. I moved less than a mile away from my
childhood home. In contrast, my son
moved to the west coast, while my daughter is halfway out the door without a
job. For me, what’s hardest is taking my mother’s advice, a quote from John
Milton’s sonnet on blindness: “They also serve who only stand and wait.”
Thanks, Mom. I hope you’re right…
Labels: ACCES-VR, autism, baby boomers, college grads, disabilities, hope, John Milton, Larry David, lawyers, millennials, optimism, OPWDD, Pace University, pessimism, Shawshank Redemption, twins