Hoping, Coping & Letting Go

     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.