Friday, March 27, 2015

Reinvented Lives


It is never too late to be what you might have been. –George Eliot 
 

             
     Isn’t it encouraging to know that even if you’re 50, 60 (or possibly older), you still have time become successful in a new career?  According to The New York Times, “Finding Success, Well Past the Age of Wunderkind” (3/21), you can succeed as writer, artist or even an athlete (!) considerably later in life than most people imagine. If you’ve never had time to write the great American novel or swim the English Channel, don’t assume you’re too late.  As an empty nester in my 50s about to publish my first book, I was delighted (and relieved) to read about 80 year old Lucille Shulklapper, who published her first book of poetry at age 60. How many 80 year old women do you know who are featured (and photographed) in a Times article— unless it’s an obituary? Happily, Ms. Shulklapper—a widowed grandmother of six—has already published four chapbooks and will publish her first children’s book, Stuck in Bed Fred early next year. (Bravo!)  Like me and many other women, Ms. Shulklapper had put aside her literary aspirations decades ago, when she got married, raised a family and took a steady job to pay her bills.
              
     “I am living beyond my dreams,” Shulklapper told the Times from her home in Boca Raton, Fla. “I feel as though it’s my baby.  A long pregnancy and now its delivery, all 10 toes and fingers.” That’s EXACTLY how I feel about publishing my first book.
               
     Most people believe that if you don’t write like Shakespeare, paint like Picasso or hike the Himalayas by the time you’re middle-aged, the odds are you’ll never do it. (I remember feeling tremendous anxiety about going to my FIVE year Vassar College reunion, because I hadn’t written the great American novel, climbed the corporate ladder (OR met Mr. Right).  And—truth to tell—I never attended a single reunion after the fifth because I didn’t feel accomplished enough to hold my own while chit chatting with successful classmates.  But now, like many other people my age, I’ve changed my mind about what it means to have a successful life. 


     Why now?  First, people are leading longer, healthier lives. The number of Americans age 65 and older increased tenfold in the last century, and the elderly are living longer, in more comfort and better health than ever before, researchers report.  Second, “retirement” has started taking on a new meaning. Increasingly, more people are reinventing themselves by starting new careers or recreating old ones which had been abandoned because of family obligations. In recent years, much has been written about the benefits of continuing to be active mentally and physically. Becoming an empty nester (but not yet decrepit) helped me see that kids DO (finally!) grow up; and, yes, time really DOES run out, even for us upbeat baby boomers.  So if not NOW, when?  What about embracing the idea that life can be just as rewarding—both creatively and emotionally— (if not more so) in the second half of our journey than the first?
              
     Later-in-life triumphs are plentiful, according to numerous examples cited in The New York Times and on Google.  At age 56, Ernestine Shepherd started bodybuilding and running marathons. John Pemberton didn’t invent Coca Cola till he was 55.  (Thanks, John! And who came up with the formula for Diet Coke? Thanks to that person too!) Golda Meir was 70 when she became the 4th Prime Minister of Israel. Dyana Nyad swam from Cuba to Florida at age 64.  Harland Sanders didn’t build his KFC empire until his 60s.  Author of “Little House on the Prairie,” Laura Ingalls Wilder published her first novel at 65, while Frank McCourt, author of “Angela’s Ashes,” won his Pulitzer Prize at age 66. And let’s not forget about Grandma Moses, who started painting at 75.
               
     A round of applause for late bloomers, please!


     Karl Pillemer, a Cornell University professor of gerontology, says “we absolutely have to revamp this idea of a linear pattern of accomplishment. There are simply too many examples of people who bloom late, and it’s the most extraordinary time of their life.” Pillemer has interviewed more than 1,500 people age 70 and older for the Legacy Project at Cornell. Many respondents said they had embarked on a fulfilling endeavor after age 65.  “There was this feeling of somehow ‘getting it right’ at 50 or 60 or older,” he said, remarking that this conviction applies to creative efforts, relationships and work.

               
     Of course there are age limitations for success in some fields.  According to researchers, crystallized intelligence (general knowledge) tends to grow over a lifetime, whereas fluid intelligence (problem solving) weakens after a person’s late 20s. Becoming a mathematician or a chess master after age 50 probably won’t work, because these fields require a lot of fluid intelligence from the outset, according to Dean Keith Simonton, psychology professor at the University of California, Davis and author of “The Wiley Handbook of Genius.” (Thankfully, I never liked math or had any interest in chess). However, Mr. Simonton remarks that “often people don’t even discover what they really want to do with their lives—or even where their talents might lie—until well past middle age. Grandma Moses is the proverbial case.”
               
     What about the issue of peaking in a given field? According to David Galenson, author of “Old Masters and Young Geniuses: The Two Life Cycles of Artistic Creativity,” there are two types of thinkers in most fields: conceptual and experimental. Conceptual minds are usually younger and better with abstractions, while experimental thinkers work by trial and error, spending more time on gestation.  Such distinctions explain why Pablo Picasso—a conceptual artist—created his best work at age 26, whereas the experimental artist, Paul Cezanne, produced his greatest painting at 67.
                
     To “peak” in a given field has a different meaning depending on who you ask.  Most people—at any age—will NEVER paint like Picasso or build a multi-million dollar corporate empire. On the other hand, Marjorie Forbes was a retired social worker who began studying the oboe at 68. At first she was happy “tootling away” in her Manhattan living room, but as her skills improved, Ms. Forbes had higher aspirations. After taking a music course at Oberlin College, she joined chamber ensembles at the 92nd Street Y and Lucy Moses, a community arts school in New York.  Now 81, she considers herself a “medium good amateur.” Ms. Forbes acknowledges that she “can’t make money doing what I’m doing, but I think I’ve reinvented myself to do something I’ve always wanted to do.” She adds, “I never dreamed I’d get to be as good as I am.”
               
     How successful can you become at whatever it is you’ve dreamed of doing?  If you don’t try, you’ll never find out.  That’s why I finally started writing in my 50s, sending out my essays and stories to hundreds of (mostly obscure) literary magazines. After hundreds (yes, hundreds!) of rejections, my work has appeared in five publications.  Two years ago I started this blog, and I recently completed (the millionth draft of) my memoir. I don’t expect my book to make the Times best-seller list.  But if I can help some of the families struggling with kids on the autistic spectrum hold onto their hopes and not give up when the going gets tough, I’ll consider myself successful. And, by the way, yes, I’m planning on going to my next college reunion….





Friday, March 13, 2015

Birthday Bounty

     Birthdays have been coming at breakneck speed these last few years.  Time flies—not necessarily because I’m having fun—but because I realize there’s so much less time left for me in the future than the past.  (See “Fast Forward Birthdays," 3/8/13).  Each year I ask myself:  “How is it even possible that I’m fifty-something?” Before I know it I’ll be entering—gulp(!)—a whole new decade. I shudder to think what it will feel like to punch in TWO new numbers on an elliptical machine. If I want to reinvent myself—as all empty nesters must—then NOW is the time.  No more postponing, no more saying “there’s always next year.” Turning middle-aged dreams into reality takes time and planning.

     My latest ideas are a lot more complicated than converting my son’s childhood room into a den. For the past five years, I’ve been gestating a memoir, writing and rewriting the story of raising my unusual twins.  Now it’s time to hatch the book: “My Picture Perfect Family.” Coincidentally, the launch began on my birthday; I met with my editor, publisher, and marketing expert to brainstorm about the book’s release. Writing my memoir was daunting enough. But now there are more unfamiliar tasks to be tackled and decisions to make.  What should the cover look like? (Yes, you CAN tell a lot about a book by its cover, ESPECIALLY if you believe, as I do, that a picture is worth a thousand words.)  What is my “brand?”  What about a subtitle that clarifies the book’s purpose? Should there be an endorsement on the front cover? What’s the difference between a prologue and an introduction?   Which copy editor is cost efficient? Which publicist has the right area of expertise?

     What started as a relatively insignificant birthday turned into a brainstorming session about the ins and outs of birthing my book in proper form, and sending it out into the world with a message of hope for people raising children on the autistic spectrum. There’s a lot of work to be done—some of which I was secretly dreading—but now I see that it’s actually going to be a lot of  FUN.  Writing is a wonderful creative release, but it can leave you feeling isolated and alone.  On the other hand, publishing is a collaborative process, and equally creative in its own way. Oddly, I find myself enjoying the launching process more than I’d ever thought I would.  Maybe I’m just excited because I’m involved in publishing my very FIRST book. Writing has always been about my relationship with the empty page; now I have a supportive and enthusiastic “team” behind me, which includes my best friend.  And sometime this coming year, I’ll finally share my story with the world. Stay tuned. . .

     This year I had a bountiful birthday.  Not only did I receive a lovely gift and roses from Henry, but my son and his girlfriend also sent flowers.  My daughter gave me a beautiful card with hearts painstakingly drawn on a pink envelope.  What more could a birthday Mom want?
   
       After two weeks of blogging about dismal headlines decrying discrimination against women (and especially women with disabilities), finally I want to tell you some good news.  This week there was an open house at Felicity House, a new Community Center dedicated to—can you believe it—women on the autistic spectrum! Better still, my daughter, Sarah’s film, “Keep the Change”(winner of the 2013 Columbia University Film Festival) was shown. (See Sarah's Next Fifteen Minutes," 5/30/14).  Director Rachel Israel and female lead Sarah were invited to speak about the film and answer questions. Maybe just maybe somebody will be moved to invest in the full-length version of “Keep the Change?” In fifteen short minutes, this extraordinary film shows that two young people with disabilities can struggle for romantic and emotional connection and succeed.  What could be better proof of this ability to connect than my real-life daughter Sarah and serious boyfriend of over a year?  There MUST be parents out there who dare to dream that their sons and daughters on the autistic spectrum will find love and someone to care for them after we’re gone.

     The hopes and dreams of women on the autistic spectrum matter.  Although 80% of people on the spectrum are male, that does not excuse marginalizing the 20% female minority.  Sadly,  50% of the world’s population (neurotypical women) are still not treated as equal to males, so what hope do women with disabilities (a double  minority) have of finding a productive and respected place in the world?  Answer: Not much, and that’s why I’m SO grateful  to each individual and every event that shines a spotlight on women who—like my daughter Sarah—have already exceeded most people’s expectations. For me, that’s the best birthday gift of all.

               

 

Friday, March 6, 2015

Hunkering Down – Hellish Headlines

     If you’re wondering when—and if—there’s going to be ANY good news about anything in the world, you can stop now.  Yes, it’s true that February ended last week—the coldest February in New York City since 1934, and third coldest EVER.  But March is living up to its reputation of “coming in like a lion.”  One headline in The Gothamist reads: “Winter May Bless Us with 6 More Inches of Snow.” (Bless?) While we New Yorkers are feeling sorry for ourselves, alternately navigating black ice and slush ponds, Bostonians are probably thinking we’re a bunch of wimps.  Snow fall in Boston—so far—is 102 inches this winter, including more than 30 inches in a two day period last month.  More snow is expected there over the weekend. (!!)  Is it any wonder that that The New York Times is reporting more and more visits to emergency rooms caused by people slipping and falling on ice?  According to the chief of emergency medicine at a Brooklyn hospital, 30 patients arrived within a single hour from falls due to ice.  Last week a good friend broke her wrist from a fall and now needs surgery.  This is particularly inconvenient and stressful for a right handed reporter, who must now hunt and peck at the keyboard with her left hand.

     In other bad news, according to The Gothamist, the “Full Second Avenue Subway Might Not Happen,” (Are you shocked? For some reason, I’m not.)  Despite the MTA raising our fares yet again, there won’t be enough money to complete construction.  Apparently, the MTA owes billions in interest on its debts, and fare increases won’t make up the short fall enough to extend the Second Avenue subway line from 96th Street to 125th Street, The Gothamist predicts.  Nothing like paying more for a metro card and learning that you won’t be able to travel as far as expected.  I have the added bonus of living on Second Avenue, where my living room window overlooks construction sheds, Portosans, and snarled traffic: a front row view of the ongoing eye-sore in the neighborhood. (See Nest Shifts 6/3/14.) Construction from 96th Street to 63rd Street is supposed to be complete in 2016. (?) What do you all think? Care to place a wager on that one?    

     More cringe-worthy local news (also reported by The Gothamist) reveals this tantalizing environmental tidbit: “NYC Rats Now Carrying Same Fleas That Spread Bubonic Plague.” Hard to believe that headline, right?   But according to a study published in the Journal of Medical Entomology— which measured the fleas and lice crawling in the fur of the Big Apple’s rats—this astonishing claim is true. After examining 133 Manhattan rats, (Is that a large enough sample?  I’m gagging at the thought) researchers found a total of 65,000 fleas, lice and mites, including Oriental rat fleas. Apparently, Oriental rat fleas are the culprits responsible for transmitting the bubonic plague, a.k.a. the Black Death during The Middle Ages.  Although researchers did not discover any plague bacteria in the fleas sampled (yet!), there’s no guarantee of future safety. “If these rats carry fleas that could transmit the plague to people,” says the study’s lead author, Matthew Frye, “then the pathogen itself is the only piece missing from the transmission cycle.” What’s our best bet?  Denial. Stop reading these on-line publications forwarded by well-meaning friends (and don’t pet lab rats).

     Okay, so headlines about local weather, rodents and transportation aren’t the end of the world. Spring will come (eventually?) and so will the Second Avenue subway (although I might be dead or too old to use it).  What about global news?  Those headlines are so much worse that you might want to consider cancelling your subscription to the local newspaper, and pulling the covers (in this weather, preferably a down quilt) over your head.

     What’s the worst headline of the week so far? Check out “A Thin Line of Defense Against ‘Honor Killings’” in The New York Times (3/3).  Not for the faint-hearted, this article is the second in a series on “Women’s War,” and examines the result of efforts to help Afghan females in a culture that treats my gender as servants and sex slaves. Subject to life-long abuse by their husbands and families, the women in the NY Times article carry deep scars, including knife grooves on their faces and chain marks on their backs.  Some limp from broken bones, while a few have faces ravaged by acid (a favorite weapon).  And these are the lucky girls and women who have made it to shelters built with our help during the war.

     After writing about the state of feminism in America last week in a (mostly) upbeat tone, I had planned to move onto a completely new topic this week. (Feminism –The Sound and Fury 2/27/15).  But now I find there is no escape from the dehumanizing horrors being perpetrated on my sisters around the world.  The hyped up issues in local news suddenly seem light-hearted and humorous.  Last week I wrote about on-line attacks perpetrated against outspoken feminists here in the USA; these verbal  assaults are a tempest in a teapot compared to the torture and abuse of females by Muslim extremists on the other side of the world, where anyone born with a vagina is doomed. Girls who rebel –daring to choose their own lovers and husbands— are beaten, disfigured and tortured.  Girls who run away to escape the abuse of their assigned husbands are hunted down and killed to assuage family “honor.”  This is not breaking news. The whole world knows about the systematic abuse of an entire gender.  However, the word “honor” will need to be re-defined if beating women and throwing acid in their faces is considered honorable. Certainly there’s no “honor” (usually implies integrity) when Afghan families convince their daughters it’s safe to leave the shelter and return home, and then shoot them outside. Likewise “family” takes on a whole new meaning in Afghanistan—or perhaps it loses meaning entirely, since civilized human beings (and even many animals) have long understood that families exist to nurture and protect the young.
     Yes, I know that the mistreatment of women across the globe has been going on for thousands of years. Are we BORED by another recitation?  Do we just fold our newspapers, change the TV channel, and get on with our lives? I just can’t do it. Not today. Today my mind fiendishly taunts me with questions, such as: What would have happened to my daughter Sarah if she’d been born in Afghanistan?  If neurotypical girls are treated as less than human, what happens to females on the autistic spectrum?  Are they killed outright? I shudder to think, or just beaten and mistreated more severely for their inability to respond as desired?  I can’t really begin to imagine Sarah’s life (or mine for that matter) if we lived in Afghanistan. After all, I need to be able to sleep at night. That means I won’t stay awake worrying about the rats carrying the bubonic plague, the unfinished subway or the bone chilling cold. Instead I’m hunkering down here in America, swathed in extra layers of clothes and snow boots, determined to wait for spring.

 

Friday, February 27, 2015

Feminism - The Sound and Fury

   
  Despite harassment and on-line abuse, feminist writers will NOT go gently into the night. Last week The Washington Post ran an on-line article about prominent female authors, bloggers, and speech makers who have been subjected to hateful name calling and death threats—not just once in a while but every day, around the clock.  Jessica Valenti, author of five books and founder of the blog Feministing.com, admitted that if she could start over, she might prefer to remain completely anonymous. 
          “It’s not just the physical safety concerns, but the emotional ramifications of constant abuse,” Valenti tells young women aspiring to write about feminism.

     While cyberspace offers feminists unlimited opportunities to speak their minds, technology also enables misogynists and critics to vent their fury and hatred easily and publicly.  Men’s rights groups such as A Voice for Men, the misogynist Reddit Forum, The Red Pill, or even Twitchy, (a right-wing Twitter group) are barraging feminists with so much  vitriol that some writers have withdrawn from the internet. Abortion rights activist, Lauren Rankin, stopped writing online and (mostly) on Twitter because the continuous on-line attacks against her became so stressful and exhausting.  Rankin continues her work as a board member of a reproductive rights non-profit, and she still acts as a volunteer clinic escort, but she no longer engages on the internet.
   
    On the other hand, famous feminist Gloria Steinem continues to speak out despite—or perhaps because of—the angry backlash.   At Johns Hopkins’ Foreign Policy Forum this week, Steinem addressed most of the hot-button issues. Violence against women and reproductive control are root causes of the world’s biggest problems, according to Steinem. A self-described “hope-aholic,” she  says “humans are linked, not ranked” and that “nature is a circle, not a hierarchy.” Steinem believes the human race is like a butterfly with two wings (male and female) and can’t fly if one wing is broken.  Taking the long view, she acknowledges that changing society is a slow process that may take a hundred years but WILL happen.... Bravo, Gloria Steinem, for pushing feminism forward with such eloquence.
     
     Sometimes feminist support pops up unexpectedly.  At the 2015 Academy Awards, Patricia Arquette, recipient of the best supporting actress title, went beyond the usual boring thank-you list.  Capitalizing on her moment before a world-wide television audience,  Arquette demanded equal pay for female actresses, on a par with their male counterparts in this country. Meryl Streep—along with other wealthy and powerful actresses—rose from their seats, to applaud and cheer loudly for Arquette’s message.  Some of my friends might argue that—feminist slogans or any political messages—should not be expressed at the Oscars. What do you think? 
     I’m happy Patricia Arquette kept her speech short, and since I happen to agree with her values, I didn’t mind the mini-departure from award etiquette. Besides, she wasn’t talking about abstract ideas or an issue of interest to a limited few.  I found the actress’s brief and unexpected exhortation on behalf of women(relevant to half of the audience, at least!) refreshing and inspiring as well as entertaining, a bright moment during  the three and a half hour marathon of vanilla acceptance speeches.  Better yet, Arquette was able to speak her mind safely and leave the stage with her golden statuette free of the harassment many feminists endure


     Some feminist battles are fought in murky territory. Monday’s New York Times describes a “he said, she said” case in the article, "A Silicon Valley Harassment Trial Casts a Long Shadow." Former employee Ellen Pao is suing a prominent venture capital firm.  Pao contends that a married colleague pressured her into having an affair with him, and then retaliated against her after she ended it.  Pao claims she suffered discrimination and received undeserved poor reviews which ultimately led to her dismissal.   The venture capital firm fired back, saying the affair was consensual and no discrimination occurred.  Furthermore, the firm contends that Pao “lacked the ability to lead others, build consensus and be a team player, which is crucial to a successful career as a venture capital senior investment partner.”

     Who will the jury believe?  The answer may have far reaching effects.  Many women in technology feel Silicon Valley discriminates against them, failing to hire, promote or take them seriously.  Confronted daily by sexism and harassment, these women are not treated with respect and become discouraged.  If the jury decides the venture capital firm is guilty of discrimination, the verdict may be seen as a broad indictment of the high-tech world.  On the other hand, a dismissal might strengthen the argument of those who insist gender issues are exaggerated.

  
   Perhaps the most perplexing piece of the feminism puzzle unfolds while trying to understand why three teenage girls would leave home to join ISIS and become terrorists. Why would anyone join an organization that would strip them of all human rights?  Yet three British teenagers—two 15 year olds and a 16 year old—were pictured on the front page of The New York Times (2/25) departing London’s Gatwick Airport on a flight to Turkey! It is believed they traveled to Syria to join the terrorist group, known as ISIS or ISIL.  These girls are NOT impoverished or uneducated; nor are their families proponents of radical Islam. On the contrary, the families of these girls are ashamed and horrified. Classmates describe the runaway girls as “studious, argumentative and driven.” A fourth girl from the same school who left in December was also described as “very intelligent, very liked, very bubbly, kind, caring.” (?!) 

     Why would (seemingly) intelligent and educated young women run off to join a violent Islamic State? Is this an extreme—and perverse—form of teenage rebellion for these girls?

     From the radicals’ point of view, it makes sense to recruit girls at younger ages than their male counterparts; a fifteen year old girl makes a good (compliant, disempowered) wife. My question is why would a girl WANT to marry a fighter in a foreign country and become part of a violent culture that subjugates women?  Instead of fighting FOR freedom they are fighting AGAINST it.  I’m completely stumped. 


     Somehow we MUST develop a powerful antidote to whatever crazy propaganda ISIS is using to lure young women into its evil clutches. Feminists around the world need to be part of the solution.  Internet intimidation should not dissuade us from speaking out.  After all, the internet has proven to be a powerful weapon in the hands of ISIS recruiters.  We women MUST learn to communicate as safely and effectively in cyberspace as our enemies.  We can do it!  And if all else fails, women still have one very significant advantage.  We are mothers; and as mothers we can teach our girls AND boys to love and respect each other as equals from the moment they leave our womb.

Friday, February 13, 2015

Disservices for the Disabled—Hell to Pay!

Disservices for the Disabled—Hell to Pay!

     What’s next for my daughter, a high functioning young woman on the autistic spectrum?  I’ve been attempting to answer that question ever since Sarah graduated cum laude from Pace University with the Class of 2014.  (See “Miracle Milestone,” 5/25/14).  Ever the savvy Mom of a special needs kid, I’d already sent in voluminous papers regarding Sarah’s disability months before she received her diploma. My plan was to get starting early in helping her secure a job through ACCESS-VR, a government agency that funds providers of job counselors, assessments and coaches. Alas, the Pace staff member responsible for sending Sarah’s papers to ACCES-VR quit academics to go into the hiking business.  Sarah’s paperwork was lost, I discovered, after several months of follow-up. I had to copy and resubmit all her tests and reports AGAIN and (of course) WAIT.  Finally she received approval for ACCES-VR in late December.  As of today, job assessments and training are supposed to start “soon” (fingers crossed).

     Thanks to my persistence and Henry’s collaboration with attorneys who specialize in helping families with disabled young adults, Sarah was approved for Medicaid, SSI and will (eventually, I hope) get a half-fare metro card.  Our daughter was also approved by the OPWDD (Office for People with Developmental Disabilities) and is now eligible for life skill support services and the low income housing wait list.  The good news (and bad news) is that we convinced enough government professionals that Sarah suffers from disabilities sufficiently severe to qualify her for the “safety net” of life skills support. For me (and perhaps for my daughter as well) the testing and evaluation process was a painful crash landing, an anticlimax after the joy of graduating college cum laude.  With Henry holding my hand, I’ve been gritting (and grinding) my teeth, hoping against hope that protecting Sarah as an adult, and navigating the government services available to her, will not be as arduous and frustrating as our yearly fights with the Board of Education during my daughter’s childhood to pay for her special education.
     I should have known better.  Before Sarah could be eligible for home and community-based services, I was required to attend two hours of Family Education and Training (FET) to gather the information “necessary to make informed decisions and to teach parents about service alternatives.”  (UGH!) Dutifully, I trekked from to 26th Street and 12th Avenue for my “training” session at SKIP, a 501©3 non-profit. What does the acronym “SKIP” mean? Sick Kids (Need) Involved People (!?).  Who makes up these annoying acronyms?  If they are supposed to be user-friendly short-cuts, intended to simplify a hellishly painstaking quest, then these acronyms fail miserably.  I don’t know about other parents, but I’m tired of snappy nicknames. Who wants to LEARN and REMEMBER what all these initials actually MEAN?  

     Hello, out there; can you hear me? Parents with special needs kids have enough challenges without memorizing a whole new language of abbreviations before setting off on the complex process of obtaining services for our kids.  No, thank you. We don’t want emojis or sound bites.  Just cut to the chase. Give me a simple step-by-step “to do” list: where to apply, who to call, when and how to follow up and—if possible—a reasonable time-line.

     Speaking of time-lines, I arrived 20 minutes late to SKIP’s Parent training session, and it was a good thing I did. The first half hour of the session was entirely devoted to instructing parents on reports and papers necessary to apply for OPWDD eligibility (BEEN there, DONE that).  Before taking my seat, I picked up a formidable pile of papers that had been handed out to all 5 parents who were present.  Included in the tree-slaughter was a “resource booklet for individuals and families.”  The booklet, 51 pages long (plus a table of contents) was entitled:  Front Door – Access to Services. If that wasn’t enough to overwhelm harried and emotionally drained parents, there were additional separate (but useful) hand outs:  Listing of Nonprofit Providers Offering MSC Services, Non-Medicaid Case Management Programs, NYC Front Door Numbers/OPWDD, NYC Front Door Numbers/OPWDD.”  (Not exactly soothing bed-side reading)!

     “Am I in the right place?” I asked SKIP’S Deputy Director, who was leading the session. “My daughter’s already been approved for services. I thought I was here to learn what to do next.”
      “We’re just about to talk about that.  If you could turn to page 9…”

      I sat down next to one of the four other mothers in the room and flipped to the appropriate page.  There I found what looked like three mini-slides with microscopic print, explaining Medicaid Service Coordination, OPWDD Service categories and “General Supports May Include.”  Next to the slides were empty lines for taking notes on the discussion. I couldn’t help noticing there was a presentation screen on the wall. Was it broken? I wondered.

     Although the SKIP instructor seemed kind and helpful, my mind trailed off.  Three of the other mothers had questions and concerns about seeking services for their under-18 kids.  Only one other mom was there to learn about services for her 26 year old daughter with cerebral palsy, and her needs were also completely different from mine. What we had in common was being married to securities attorneys, and both our daughters were interested in music. Kindly, the other mom wrote down a few quick ideas for Sarah. I tried to pay attention to the SKIP instructor, and even took notes, but I couldn’t help feeling like I was sinking deeper and deeper into verbal quicksand.

     Luckily, this one-size-fits-all info session ended before I drowned in words. (I’d sort through all the papers and decipher their meaning another time.) But I received the necessary “certificate of participation,” confirming my attendance at SKIP. Phew! I could take the next tiny step forward in securing help for my daughter. At the end, I did finally get a chance to ask a few questions privately.

     “Isn’t there a simpler way? This process seems very long and complicated,” I couldn’t resist adding.
     “We’ve been trying to simplify it,” the SKIP Deputy admitted.  “We applied for a grant so parents like you—who are capable and well-informed—could self-register, but we got turned down…”

      Frustrated and bewildered, I headed home in the bitter cold.  Hoping for enlightenment and encouragement, I emailed our attorney who specializes in helping parents of young adults like Sarah navigate this labyrinthine system of securing support services. Did I get the answer I was looking for?

     Here’s what our lawyer wrote: “I’m going to put together a package of the documents everyone is asking for which I will send for your review.” (Oh, goody!)  More trees would have to die in order to convince somebody somewhere that Sarah needed life skills help. I’d have to call my attorney to brainstorm and discuss (alas, more legal fees).  I continued reading the email, which ended as follows:  “There are long waiting lists for many services.  This is the result of cutbacks in funding and the current popular belief that too much money is being spent on people with disabilities already.”  (My italics).

I’m not surprised.   Are you?

 

 




               

Friday, February 6, 2015

Buried Treasures

    
     Despite our annual spring cleaning ritual— dutifully dragging out industrial-sized garbage bags of each year’s detritus— the Elisofon family nest has accumulated way too much, well, stuff.  After over 20 years in the same apartment raising our twins, our nest has become cram-packed and full to the brim. Even though I summoned  the Salvation Army with alarming frequency (to pick up dozens of shopping bags filled with old clothes, books, toys and sports equipment) a tsunami of clutter still covered every flat surface, filling bureau drawers, crowding cabinets and bookcases until every nook and cranny overflowed with objects some family member couldn’t  bear to lose.  


     For many years, cleaning up had seemed like a lost cause.  But last September Max spread his wings and flew out of the family nest to live with his girlfriend in Brooklyn. Would we leave Max’s room as a messy shrine to our son’s childhood? (I have a friend whose mom maintains her brother’s room the way he left it more than 3 decades ago!)  Or would Henry and I reclaim the precious, newly vacated space in our compact apartment and convert it into something new and shiny that we could actually enjoy?  With no debate, Henry and I rolled up our sleeves and began to clean and clean. . . .   

     Finally, the room was ready to become a cozy den (see “Nest Lift,” 11/14/14). We repainted, bought a new rug and a sofa bed, (in case Max needed to stay the night). Then we felt inspired to give the rest of our nest a quick upgrade too. At this point our rehab project took on a life of its own. Replacing our dining table (ruined during one of Max’s high school science projects) was at the top of our list. In addition, our dining chairs were literally on their last legs; one had already collapsed under me— to uproarious laughter—during a family dinner three years ago.  (That chair went to furniture heaven after 22 years of faithful support).   Henry and I found a new (nearly indestructible) granite table and six bright red chairs.  Wow! I could finally sip my coffee in a chair that didn’t wobble, and look up from the newspaper without seeing the razor slashes across my dining room table top. And Henry got to watch the Super Bowl in the den on the new 48” TV that arrived just in time.

     Next our attention turned to the living room and book cases, where we confronted an ugly truth:  MORE cleaning was mandatory. Ugh! Over the years we’d accumulated a gallery of family photos, an impressive book collection, and enough cancelled checks and financial papers to stymie the IRS if they ever DARED to audit us.  Sifting through all of these items, I discovered some of my old writing. Ancient writing, in fact, these stories and notes stretch all the way back through college and high school to the very first poems I wrote at 15 about the long-haired boy I thought I loved.  After a nostalgic read, I threw out most of my adolescent poetry, tear stained diaries, Shakespeare papers, an old Psychology exam, and memos from my first job (in public relations).  What I kept was: my college fiction, old letters from friends, some non-fiction and a few (later and better) poems.  
     Reading through my long-lost words took me on a journey into the mind of the young woman I’d been so long ago, before meeting Henry and creating a family.  I’d forgotten how lonely I’d felt for so many years. I’d forgotten the taste and flavor of coming of age in the 1970s, when “first wave” feminism was transforming women’s roles.  Back then magazine covers proclaimed that women could (and should!) “have it all:” husband, family and career.  What those glossy pages  failed to mention was that women were being paid half men’s salaries for doing the same jobs, while we were  expected to work twice as hard (to prove our worth!) and continue cleaning, cooking, entertaining and networking with our spouse’s clients and – oh yes, having hot “free sex” with our husbands on a regular basis!   

     Am I the only woman who noticed that it was horribly unfair—not to mention exhausting—that we’d been assigned mission impossible? I was smart enough to know my anger was very uncool, so I kept my head down and my chin up. (How is that even possible?) I followed the new and many splendored path American culture had laid out for me. I looked for a job, (a career, even) and dated as much as possible (and palatable).   Even now (more than 35 years after graduating from Vassar), I can’t help noticing that angry women are still perceived far more negatively (think: hysterical, depressed, whining, irrational) than angry men (think: righteous, aggressive, strong, and reasonable). And I was supposed to feel liberated?

     Somewhere in my early 20s—around the current age of my twins, Max and Sarah—I tried to develop a sense of humor about my confusion over finding my place in the world.  Amongst my many unearthed papers and teenage creations, I discovered the beginning of a book—The Career Handbook—a subject about which I knew virtually nothing at the time. 

     “Is there life after college?” I’d written.  “And if so, how do you enter it and where?  What happens after they hand you a diploma and tell you to go out and conquer the world?”

     “If you are one of the ‘lucky’ ones who decided to become a lawyer, doctor, or banker, your career path—if not easy—is at least clear.  But if you’re an artistic type, thinking of film-making, advertising, or writing, the road to success may well turn into a bewildering labyrinth, unless you’re aware of the many monsters that await you.”  (Really, how did I know such things)?

     “Not that monsters don’t attack lawyers, doctors and other business people, (I continued musing like an experienced pro) “but these monsters are a different breed.  As you’ll see in the appropriate chapter, monsters who attack openly are easier to identify, and the means to destroy them are well documented.” (Ah, there’s nothing quite like bravado powered by youthful ignorance.)
     “However, anyone who’s not sure about a career and tries to synthesize their interests with a job that sounds glamorous or lucrative in the spirit of ‘life-is-a-giant-buffet-and-I’d-like-to-taste-different-dishes-before-I-commit-to-lobster-fra-diavolo’ is in for a bad case of indigestion. I know because I’ve been to the buffet table.”  (No doubt, I was referring to my early disappointment with low-paying jobs in publishing and public relations).

     Here comes the hilarious (and, yes, also sad part):  “I’m writing this book for all of you who dare to dream about becoming the next ‘you’re not sure who yet, but you’ll fill in the blank later.’  I want to save you all some time and Maalox.” Go Max, go Sarah! My younger self seems to be lobbying for the twins who will one day be the age I was when writing my career handbook. 
     Ever whimsical and determined, my 20-something self continued: “I also like to write about what I like to write about: this subject of careers for example. Or maybe I should say I write about what I care about.  Of course, in some ways I wish someone else had written this career book about ten years ago.” 

     Probably someone else DID write that career handbook, long before I’d thought of the idea and long after I’d abandoned it.  The truth, according to the psychotherapist I’d seen at age 24, was that Michelin’s guide to my life had been torn up (if, in fact, it had ever existed). Now, all these years later, I’m thinking that there is no Michelin’s guide— not for me and not for anyone.  We all plan our paths, and then life hijacks us in new directions.  Giving birth to pre-mature twins?  Raising a child on the autistic spectrum? These weren’t my choices, and likely they wouldn’t be yours either. But who you become grows out of what you do each time life offers you a fork in the road or an uphill journey. Even in my 20’s, I got that part of The Career Handbook right: moving forward with your life and becoming your best self is up to you.

 

 

 

 

Friday, January 30, 2015

Blizzard Boondoggle

      History was made this week—but NOT the way meteorologists expected.  Record snowfalls were predicted in a seemingly endless (and tedious) loop on every news station all weekend.  In anticipation of an overnight snowfall of two to three feet, Governor Cuomo and Mayor De Blasio shut down New York City at 11 PM Monday night.  No more subways or buses until further notice.  All non-emergency vehicles were forbidden access to roads in preparation for the army of trucks and ploughs necessary to  cart off the soon-to-be perilously mounting piles of snow. For the first time I can remember, schools were closed the night before (instead of early in the morning) to the delight of all city children. But before kids could pull out their sleds—alas—Central Park also closed, for fear of falling tree branches under the weight of all that snow.  In fact, our mayor, ersatz nanny-and-principal, urged everyone  to leave work early, go home, and stay inside. “Duh!” Anyone looking out the window Monday afternoon didn’t need much convincing.

     However, before we plucky and practical New Yorkers decide to batten down our hatches, turn up the heat in our apartments, and hunker down for the duration, we have to prepare for this mother of all storms, right?  Everyone—and I do mean everyone—ran to the supermarket.  Who knew how long the Big Apple would be shut down?  How would our groceries get delivered with two feet of snow on our streets?  At 2 PM on Monday, I hurried to Food Emporium where I found every shopping cart taken and people waiting to pounce on an empty one as soon as it got unloaded.  Even after I succeeded in snagging a precious wagon, navigating the crowded supermarket turned out to be quite a challenge. Is this what it would be like if there were an impending nuclear holocaust?  Or had I wandered into an episode of The Walking Dead? 

     Quick, quick, grab the Bumble Bee tuna packed in water for Sarah’s diet, I silently chanted, willing myself through the human labyrinth.  Oh NO, all that’s left on an almost-empty shelf of tuna is the high calorie Bumble Bee soaked in oil.  Crouching down to the bottom shelf, looking deep into the  back, I managed to spot and grab a lone four-pack of Star-Kist tuna in water.  Phew!

     Time to captain my wobbly-wheeled, metal cart toward the beverage aisle.  I checked my list for the Elisofon preferred sodas and waters.  In shock and chagrin, I discovered that competing shoppers had already scooped up every last small bottle of plain Perrier and Poland Spring.  All that was left were lemon and lime flavors nobody in my family likes. Quickly, I grabbed a few large plain bottles and threw in the last 12-pack of Pellegrino—not my preferred brand—but, hey beggars trapped by Mother Nature can’t be choosers.  At least there was plenty of Fiji water, Henry’s favorite.
     I’d have fled the market at that point, but we still needed eggs, cheese and cold cuts.  In the dairy section, more bad news awaited me.  Forget about jumbo or extra-large eggs.   Only the “large” eggs remained, (by comparison, these tended to be quite small) but scrambled eggs on Saturday are a must, so I carefully perched a carton of scrawny eggs on top of the other necessities in my wagon.  En route to the cold cuts counter, I scooped up a wedge of Jarlsberg, leaving only one more wedge on the counter.  (Normally, there was a pile of 20 or 30 hunks in various sizes.) Next, attempting to approach the cold cuts area, I encountered a seemingly endless line of shoppers waiting to check out. The cold cut counter was completely obliterated by the throbbing, impatient masses wanting to pay and escape the market.   

     “Excuse me.” Gingerly, I slipped into the crowd, reassuring everyone that I wasn’t cutting the line. “I just need some turkey and roast beef,” I promised. “I swear I’ll to go to the end of the line afterwards.”

     The “end” of the line stretched halfway through the store, past the milk and dairy section, snaking through the meats and beyond.  As quickly as possible—without crashing into a baby carriage or knocking over an old lady with her walker—I slid behind a young woman holding a small basket of items and nonchalantly photographing the surrounding chaos with her iPhone.  As I caught my breath, she snapped a selfie.

     The powers-that-be at Food Emporium had obviously mandated all shoppers to stand in one gigantic, serpentine line—instead of the usual EIGHT smaller lines for each cashier. (Maybe they’d  imagined our progress would be more efficient in this new configuration?) We inched along.  Suddenly, I realized I’d better grab some more toilet paper.

     “Don’t worry.”  The woman in front of me graciously offered. “I’ll save your place and pull your wagon behind me.”
     I looked at her dubiously.  My wagon was heaped and overflowing. “Are you sure?”

     She waved me off with a smile, and I sprinted across the aisles toward paper goods. No more Charmin Ultra Soft.  Our fannies would survive on Cottonelle.  Returning to the deli counter, the approximate area where I’d left my cart, I saw that the line had suddenly surged forward in my absence. Luckily, I recognized the kind woman who’d offered to help me still dutifully dragging my cart.  Slipping in behind her, I said “Thanks. I owe you.”
     Approaching the cashier area, chaos truly reigned.  Some shoppers had carts piled high with groceries; others clutched baskets with less than a dozen items.  No one directed traffic.  Small orders did not go into an express line, but mixed with people like me who had huge orders for delivery. I felt sorry for folks with under a dozen items, but there was literally no room to maneuver my cart in order to let them go in front of me.  And even if I had somehow managed to let that person with only bread and milk slide into the line in front of me, well, wouldn’t the next shopper with only a few items want the same favor? And the next?        

     Looking at my watch, I realized it was much later than I’d thought.  My doctor’s appointment (already confirmed) was only fifteen minutes away. I didn’t want to be late because I knew the doctor and his staff would need to leave early.  I also knew that rushing down the sidewalk was a bad idea: I might slip, fall, and need an orthopedist appointment next. I shuddered at the vision of the orthopedist’s crowded waiting room, filled with my compatriots who also fell in the blizzard. . . .

     Uh, wait a minute, you might say. What blizzard? 

     Indeed, what did happen to the bales of snow that were supposed to fall all night Monday and all day on Tuesday?  Looking out the window Tuesday morning, Henry informed me that there was not a single snowflake falling.  Oops, the metereologists at the National Weather Center had made a mistake.  The storm—named Juno—had taken a last minute turn eastward. Long Island had  been pounded with over two feet, and Boston’s suburbs got hit even worse.  But in New York City, only a measly 8 to 10 inches in total had wafted down.

     “Sorry,” the metereologists said (with rather less enthusiasm than when they’d been reporting the oncoming storm).

     “Better safe than sorry,” the politicians chimed in.

     The New York Post called it: “the great snow job of 2015.”  Making fun of our mayor on the front page, the headline read: “De-Railed! Scandal behind subway shutdown.”  Further, the Post calledmeteorologists “forecast flubbers” who “flaked on this one,” and derisively referred to the “historic snowfail.”  Clearly, the editors had fun with their story (as I’m having fun with mine).  Call the storm what you will— I call it a boondoggle best enjoyed  from Florida, on a flat screen TV.