Friday, July 18, 2014

HIPAA Flaws and Follies


      Who dreamed up a law that prevents parents from access to medical information about their over 18 year-old kids—unless these famously still-adolescent offspring have signed a HIPAA waiver?  I’m betting that in most cases even neurotypical kids want and need their parents’ help in dealing with doctors.  Especially when filling out endless forms, asking for a detailed family history, medication dosage and frequency, and, yes at the very bottom of the paper mountain, that pesky HIPAA form. Since most young adult kids are covered by their parents’ insurance (up to age 26, thanks to Obama), many parents are still making and paying for medical appointments.  It seems like an obvious disservice to everyone to keep caring and paying parents in the dark.  If kids are emancipated minors who pay their own bills, that’s another story.  Those young adults have proven themselves to be highly independent, capable of managing their own lives, and they have earned the right to privacy.
      However, it seems that none of our brilliant lawmakers thought much about the plight of young adults with disabilities or their parents. I’m quite certain if one these brainiacs had a young adult child on the autistic spectrum, (or with ADHD, bipolar or borderline diagnosis or some other mental disorder), he or she would NEVER have written the HIPAA laws in their current form.   Surely the lawmakers and parents of kids with disabilities would be aware of the scientific evidence demonstrating  the prefrontal cortex—the part of the brain associated with good judgment—does not complete growth until age 25 in neurotypical adults and even older for adolescents with issues. This is a HUGE population!!

     Thanks to the current HIPAA law, yesterday at the doctor’s office I was unable to pick up my daughter Sarah’s medical forms. These comprise the very last piece of a package that needs to be submitted to the Office for Persons with Developmental Disabilities (OPWDD) in order to secure enough support and funding to allow my daughter’s dream of being independent to come true.  At the doctor’s office, a nurse explained the glitch:  While Sarah had signed her name on the HIPAA form, she failed to put my name on it. (See “Mommy Vortex,” 6/14/13, where I described the limits to Sarah’s independence and her difficulty filling out detailed medical forms). The office receptionist told me the HIPAA form needed to be redone correctly. I should bring a blank form home to my daughter, have her sign it, add my name and return it to the doctor’s office the next day. (!!!) So the disenfranchised Mom gets to do errands for her daughter, placate an uncaring medical secretary, and redo a medical form that could have been filled out correctly the first time if we’d been given proper instruction or if anyone had bothered to look at it while we were there. Adding insult to injury, Mom has to pay the doctor bills BUT receive NO information.  By the way, at the time of Sarah’s appointment, I tried to be thorough by asking the medical secretary if my daughter had properly signed the HIPAA form. At the time, she said yes. What she neglected to add was that Sarah had failed to put my name (or anyone else’s) on the form, thus rendering it meaningless. Who else has played Catch 22 with their doctors? And if I can’t get a straight and complete answer from the medical secretary, what hope does my daughter have of navigating the system alone?

     When Sarah was 19, the HIPAA laws created a big problem for her.  During freshman year of college in Vermont, (at a school where all the students have disabilities) Sarah was sexually assaulted by another student.  Our daughter almost didn’t tell us, and she had a limited understanding of how badly she had been violated.  When we reported the incident to the administration, the college offered to take her to the hospital, but she didn’t want to go.  Sarah preferred to continue on with her life, go to dinner and a party as if nothing had happened.  Even after we convinced to her allow college personnel to take her to the hospital, the hospital had asked her if she wanted various tests for pregnancy and STDs.  Our daughter said “no” because the law allowed her to do so.  The problem was that Sarah didn’t understand WHY she needed the medical tests or why they were important. No one had explained things to my already vulnerable daughter in a way she could comprehend. No intelligent person says “yes” to a medical procedure they don’t understand.  As soon as I explained things to Sarah, she was willing to return to the hospital and undergo the appropriate testing.  Why didn’t the special needs college or supposedly educated hospital personnel try to communicate with our daughter in a way that a young adult on the spectrum would understand?  I can only guess they didn’t consider it part of their job description.

      Of course the flaws and follies in the 1996 law known as HIPAA go way beyond my own family.  Consider the horrifying killings in Isla Vista, CA on May 14th by Elliot Rodger, a mentally ill young man of 22.  Did his parents know everything they needed to prevent that tragedy, or did the privacy law prohibit doctors and psychiatrists from sharing “protected” patient information?  Perhaps some thought should have given to protecting this patient’s potential victims.  Continuously rejected by women, Rodger had targeted attractive female college students and sexually active men in his revenge shooting rampage. Many serious mental illnesses, like schizophrenia, begin at the end of high school at exactly the age when HIPAA prevents doctors from sharing a patient’s information with his or her parents.
     Speaking of schizophrenia, it’s pretty crazy how lawmakers go out of their way to protect the privacy of all 18 year olds, yet are perfectly willing to send them to war.  According to our laws, young adults are mature enough to kill and die for their country, but not old enough to drink alcohol. In fact, if they are unlucky enough to be caught drinking alcohol or with a phony ID, they can be kicked out of college and end up in jail.  Meanwhile, sororities and fraternities have continued to thrive on college campuses with parties and binge drinking rampant among the many under-age students.   Imagine how precipitous the decline in college applications would be at schools where the administration assiduously and consistently worked to eliminate all drugs and alcohol on campus.  Sure, a handful of kids are arrested and expelled, fraternities and sororities shut down, in order to satisfy the letter of the law and protect against SOME (but not all) drunk drivers.

     Who else hasn’t been protected by HIPAA?  It’s not just young adults (or their victims) who suffer from poorly written, short-sighted laws, it’s also the elderly.  As medicine improves and more of us live longer, there will be an even bigger pool of aging and frail adults.  Many of the elderly will develop Alzheimer’s or suffer from elder abuse, either too cognitively impaired or too afraid of their families to report symptoms.  Under current laws, the doctors who are supposed to care for and protect the elderly do not have the legal authority to report suspected abuse or neglect unless it’s extreme. If some octogenarians are more like eight-year olds, don’t they deserve the same protections as children?
     Of course most parents understand that young adults want to be able to confide in a therapist, seek contraception or even an abortion without a parent being notified. In those cases, confidentiality should be respected. Otherwise, the thinking goes, there would be more unwanted pregnancies and suicides because kids would be afraid of their parents reactions to seek medical care.  But what about all of the other situations and populations I’ve mentioned (to say nothing of those I haven’t thought of)?

     Simple misundersanding of the rules also contributes to the problem.  "There's a tremendous amount of misinformation among the general public and the medical community about HIPAA," says Carolyn Wolf, head of the mental health practice at Abrams Fenster, a New York law firm. Doctors often don't understand that there are situations where they would be allowed to reveal information.

        It’s not my job to correct HIPAA’s flaws and follies.  But, as a taxpayer, I have the right to point them out.

Friday, July 11, 2014

Shrinking Down

     Why weren’t psychotherapists included in my lament about all the time and money our family has spent on doctors? (See “Doctored Up,” 6/27/13).  The answer is both simple AND astonishing.  Thanks to the mind-boggling variety of practitioners we affectionately (and not-so-affectionately) refer to as “shrinks,” I firmly believe psychotherapists deserve a blog post (if not a book) of their own.  Psychiatrists, psychologists and psycho-pharmacologists all belong in the over-crowded category of shrinks.  To make matters even more complicated and confusing, there are many types of psychotherapy: Behavioral, Cognitive, (CBT) Dialectal, (DBT) Psychodynamic and Gestalt, to name just a few. And let’s not forget all of the psychological theories that have been essential to—or completely omitted from— the training and education of today’s mind doctors: Sigmund Freud, Carl Jung, B.F. Skinner, Carl Rogers, Erik Erikson…the list goes on and on.

     There are probably as many different types of shrinks as there are flavors of Baskin Robbins ice cream--especially if all the sub-specialties are included.  How do these therapists “specialize” in crazy? Just like regular physicians, shrinks often choose to work with specific demographics: children, adolescents, geriatrics. In addition, there are shrinks who specialize in drug and alcohol abuse, grief, marriage, divorce, family systems, and chronic illness. Some shrinks gravitate to patients who are crazy in different styles: bi-polar, manic, schizophrenic, psychopath, borderline personality disorder, along with the garden variety of patients suffering depression or anxiety. Some shrinks rely exclusively on “talk therapy,” while others combine medication with free-association and soul-searching.  What about the philosophical divide between those practitioners who fervently believe in long term therapy, versus those who ardently advocate short term therapy?

    In today’s world—if you happen to be anxious, depressed or even mildly crazy (whatever that means)—it must be incredibly difficult to select from the smorgasbord of shrinks out there.  Readers of my vintage who grew up in the ‘60s (when everyone still worshipped Freud) had only two real choices.  The first choice was psychoanalysis, where we stretched out on a couch at least 3 times a week, free associating and trying to understand dream symbolism in the reassuring presence of a shrink who mostly listened, asked questions and gently led us to an “Aha moment.”  Needless to say, psychoanalysis was an expensive, long term therapy that could go on for a lifetime. Anyone who saw “Annie Hall” may remember Woody Allen’s famous line.  After 15 years of analysis, he says: “I’m making excellent progress.  Pretty soon when I lie down on the couch, I won’t have to wear a lobster bib.”
     The second choice in the old days was psychotherapy—what I think of as the diluted, poor man’s version of analysis.  You went less often, sat in a chair, and often worked with a CSW or Phd psychologist  who was cheaper than a psychiatrist with medical training.  These psychotherapists often took a more active, confrontational approach and relied on an assortment of psychological theories.  Did either of these popular therapies work?  Definitely not, if you ask me or any baby boomer I know who consulted a shrink in their 20’s and 30’s.  What brought some relief to me and my friends was the introduction of Prozac and the other serotonin reuptake inhibitors.  Although not the panacea, at least Prozac and its descendants provided us with a legal “happy” drug.

     These days Americans spend $86 billion on anti-depressants, which are among the most commonly prescribed drugs, according to Google.  How much do we spend on shrinks?  A whopping $44 to 55 billion. You might also be shocked to learn from the NIMH that nearly 1 in 3 Americans (or 75 million people) suffer from a mental disorder.  These patients are served by over 552,000 mental health professionals (aka shrinks), whose main focus is the diagnosis and treatment of mental health or substance abuse concerns, according to statistics from the US Department of Labor.  Not surprisingly, the job outlook is strong for shrinks—especially for psychiatrists and professionals with a specific specialty.
     If you don’t believe that mental illness will impact your life, think again.  For all mental disorders, the lifetime prevalence rate is an astonishing 57.4%, more than 1 out of 2 Americans. That means even if you haven’t personally suffered from being crazy or depressed, a friend or family member has surely been diagnosed with a psychiatric disorder (surprise, surprise).

     So how do most people recover from depression?  According to Michael Conner, PsyD, “almost any strenuous exercise for 30 minutes three to five times a week can reduce or eliminate symptoms of depression.” On his list of recommended activities are:  strenuous walking, hiking rowing, biking, running or weight lifting.  Further, he contends that “combining exercise and psychotherapy is more effective than combining anti-depressants with psychotherapy." Conner insists only 15 – 25% or depressed people improve somewhat from taking anti-depressants.  Apparently, research “repeatedly confirms that 40 -50% of depressed patients get better because of the passage of time, fortunate events or changes they make in their lives.” Duh!   Evidently a successful shrink, Conner triumphantly concludes that “psychotherapy can empower people to make changes and incorporate exercise into their life.”

     I’m not sure I agree.  Personally, I find the right combination of exercise and anti-depressants more effective (and affordable) than exercise and psychotherapy. Of course I speak as a former patient of several shrinks, various therapies, assorted anti-depressants and different types of exercise.  A boring exercise routine does produce endorphins that lead to a greater sense of calm and well-being. And, yes, moving and sweating—however tedious—can be a temporary distraction from depression.  But that’s NOT a cure, at least not for me.  I set my sights higher than a brief endorphin lift.  I’d rather take dance class with Matthew Johnson on Mondays and Wednesdays at Equinox than see a shrink, lift weights or go running.  (See “Nest Escape, 5/16/14).  This dance class is exhilarating, uses choreography I can follow, music that’s upbeat, and an instructor who shares so much positive energy that he makes everyone feel young and alive.  On July 7th—his 27th birthday—he offered us a musical autobiography of his life.  And I’m not the only student who finds Matthew the dance teacher enchanting. Three women brought him birthday cakes. When class ended, he declared to all of us: “You are beautiful. You are strong. You can do anything!”

     Okay, so maybe it’s not 100% true, but these passionate words buoy my endorphin-raised spirits and keep me smiling much longer than 45 minutes worth of head shrinking insights and observations.

Friday, June 27, 2014

Doctored Up

 

     If you are lucky enough to be “healthy”—aka free of terminal diseases—but saddled with the more usual chronic problems, you might just find yourself Doctored Up.  By Doctored Up, I mean spending more time and money in the offices of “health providers” than you ever imagined possible.   First, there’s running the gauntlet of annual check-ups with your internist, eye doctor and dermatologist; then (if you’re female), the gynecologist the radiologist (if you’re over 40), and the pediatrician (if you have kids).  And let’s not forget all of those delightful visits to the family dentist and hygienist simply to maintain optimum dental health.  And that’s just the baseline.  Once you have a cavity, sinus infection or any lumps, bumps, aches or pains, you can start the rounds of seemingly endless appointments with physicians and specialists—sometimes alone and sometimes with loved ones.

     Take this week for example. Yesterday I went with my husband to an orthopedic back surgeon for a consultation.  For many years Henry has had chronic lower back pain from several herniated disks.  About once a year he goes to a physiatrist for an epidural, and that usually does the trick. But not this time.  Henry has had multiple shots in various disks over the past six months, practically turning himself into a pin cushion. Not that he’s anxious for surgery, mind you.  He’s gone for multiple rounds of physical therapy.  Desperate for relief, he even sees a chiropractor.  My husband is not crippled or bent over, but his quality of life has been compromised.  He can’t walk more than eight blocks, has to choose his chairs carefully, and remember never lean to the left. And, did I mention that he sometimes feels like there’s a knife in his back?

     Yesterday, after we waited nearly an hour to see the doctor, we learned—surprise, surprise—that Henry’s not a candidate for spinal fusion. His symptoms are insufficiently severe   He doesn’t have a dropped foot or sciatica, and he doesn’t lean on walls or walk like a hunchback. (!!) Besides, the success rate for spinal surgery is only about 50%.

      "We’ll cure cancer before we cure back pain,” the surgeon told Henry.
 
     Not liking this answer, Henry decided to seek a second opinion from a neurosurgeon.  After looking at the x-rays, MRIs, and giving Henry the same physical exam he’d experienced the day before, the second surgeon came to the same conclusion as the first one:  Surgery is out.  He advised Henry to try more injections into S4 and S5 and continue seeing the chiropractor.  In other words: try to live with the current pain and don’t come back unless it gets significantly worse.  I’m no doctor, but I’ve been giving this same advice to Henry all along.  Unless I’m in a casino, I don’t like 50/50 odds.
 
     Henry might be finished with doctors this week, but I’m not.   My daughter Sarah has an infection in one of her pierced ears, so I made an appointment for her to see our dermatologist.

     “Please DON’T come with me,” she demands. “I’m NOT a baby.  I can go myself.”

     “Of course you can,” I assure her.  I need a day off from doctors and I know she’s capable of dealing with an infected ear lobe.  This has happened so many times before I know she can handle it.  But I WILL have to call the doctor’s office, remind them of her disability, explain why she’s going, and arrange payment.  I’m beginning to think it might be easier (and cheaper) to give up on Sarah having pierced ears.

     After my one day off from doctors this week, I must go with Sarah down to NYU Langone to visit her diet doctor.  Those pesky last few pounds are sticking to her like glue.  Plus my daughter has just come off Abilify—the drug that made her gain all the weight in the first place—and  I’d like to see her  start to come off the stimulant drugs used to offset the metabolic side effects of Abilify.  Now that Sarah is off Abilify, she’s more anxious and sometimes gets “stuck,” or chatters too much.  I’m hoping maybe the best solution is no drugs at all.

     Next week it will be my turn to go to the dermatologist for a mole check because my mom had melanoma in her 50s.  Just around the corner in July is the appointment that every woman dreads— my yearly mammogram and sonogram.  Perhaps the only thing worse than seeing my radiologist is going for a colonoscopy (but at least that’s every three years).

     What are the 20 leading primary diagnosis groups for office visits?  Other than routine health check-ups, gynecological exams and heart disease, a few of the leaders surprised me.  According to the U.S. Department of Health and Human Services, spinal disorders (like Henry’s) and metabolic issues (like Sarah’s) were right up there with cancer, diabetes, asthma and cataracts, all contributing  to 1 billion office visits per year!

     How much time will you spend in a doctor’s waiting room?  The average waiting time is 21 minutes, but can easily run over an hour (as recently happened to Henry and me). Obviously, the answer depends on where you live, who you’re seeing, and whether a particular physician accepts insurance.  A doctor who accepts many insurance plans will usually have a crowded waiting room.  Here are a few tips to shorten your wait: book earlier in the day before emergencies are squeezed in and the doctor falls behind schedule; call ahead to find out if the doctor is backed up.  If you can’t get an appointment as a new patient, go on a wait list and check each day for a cancellation.

     I know my family is lucky to have health insurance so we can afford to see all of our fine doctors, and luckier still that we’re all basically healthy.  Of course, it’s possible that with Obama care our policy could be cancelled or become prohibitively expensive.  As much as I might complain about the time and money we spend on doctors, we can’t live without them.   If we want to have the best chance to “live long and prosper” as Mr. Spock in “Star Trek” once said, better to be Doctored Up.

Friday, June 20, 2014

Special Father's Day Gifts

      Early last week our twins went into Barnes & Noble together to buy Father’s Day gifts after having a rare lunch together. Just the fact that Max and Sarah shared a meal alone together was in and of itself a gift.  Despite being twins, they are opposites in so many ways.  Everything that comes easily to Max— reading, getting As in school, and making friends—has always been a herculean struggle for Sarah, who is on the autistic spectrum. 

      In the early years, Max was embarrassed by Sarah’s meltdowns and envied the extra attention she demanded from us.  He was always kind to his sister and protected her from bullies, but steered clear of her as much as possible. And who could blame him? More competitive than Max, Sarah envied her brother for being better at almost everything—especially his superior conversational skills and sense of humor—which earned him many friends and the lion’s share of our attention at family dinners.  Even when Max tried to include his sister and ask for her opinion—something as simple her favorite song in a Broadway show—Sarah would become nasty and defensive, worried that she couldn’t come up with the right answer.  As the years passed, our twins increasingly led separate but parallel lives, only intersecting briefly over occasional dinners, holidays and vacations.

     As hard as I’ve tried to bring my twins together, I’ve realized that it’s not possible unless they are BOTH willing participants.  So imagine my joy when Sarah suggested to me that she’d like to be closer to her brother.  To my great surprise, she quoted a friend of mine: “Jealousy is a wasted emotion,” she informed me. “How can our relationship get better?”

     This was music to my ears. “Maybe start by asking him to lunch?” This would be easy for both of them because they had done it from time to time in the past.  Sarah is very comfortable talking about food and restaurants.  Max would let her take the lead. 
     After sharing grilled calamari and salads, Max suggested going into Barnes & Noble together to buy Father’s Day gifts.  It was Max’s idea to buy Henry a book (his first store-bought gift ever).  Sadly, Sarah has never read a book that wasn’t assigned for school, nor would she set foot in Barnes & Noble unless absolutely necessary.  However, if Max was going to buy a book for their Dad, our ever-competitive Sarah was determined to buy one too, notwithstanding the fact that she had NO IDEA how to pick a book for my finicky husband.  But Max was savvy enough to guide her through Barnes & Noble to non-fiction in the History Section.

     According to Max, Sarah had tagged along yanking out books at random:

     “What about this one?” She’d pulled out a book about Bill Clinton.

     “Do you even know who Bill Clinton is? Max had asked, certain his father would not be interested in a book on any of the presidents who’d served during his lifetime.
     “He’s married to Hillary Clinton,” Sarah answered. “And he was also president.”

     Later, Max and I found this response very funny, as was Sarah’s next gift selection: a giant book about Hitler.

     “Not that one either,” Max had advised.
     “Hitler was a meanie,” Sarah agreed. “He killed a lot of people, and was a real Mr. Sluggo.”

     Our daughter had never studied the Holocaust.  Special Education schools have their hands full just trying to teach the Civil War to kids with learning disabilities, let alone tackle genocide.  Like many neurotypical people, Sarah was unable to wrap her mind around the enormity of Hitler’s atrocities.  Instead she compared him to the clay villain, Mr. Sluggo, in the “Mr. Bill” cartoon series she had enjoyed watching with Henry when she was  younger.
     Max continued searching the stacks and eventually found a book for  Henry, but he was unable to buy it and make it to his next appointment because the check-out line at Barnes & Noble was too long.  My twins left the store together, bookless.

     Later that day, Sarah wandered into a different Barnes & Noble by herself and bought her father a book.  Proudly, she texted me that she’d paid for the book using a gift card she’d received for graduation. She’d even managed to get the book gift-wrapped.  Scrolling through the rest of her rambling text, I learned that she had chosen “A Theatregoers Guide to Shakespeare” because she believed it was “a mix and match” of her interest in theater and her dad’s “interest in theater and history when he was in college.”

     Hell would freeze over twice before Henry would ever read this book, but my eyes welled with tears anyway.  Just two years ago Sarah had gone to Barnes & Noble with her Social Literacy class (one of the autism support offerings at Pace) and had a major meltdown.  The plan had been for each student to ask for help with locating a book.

     “BUT I’M NOT SUPPOSED TO TALK TO STRANGERS!” Sarah had protested loudly. Over and over she repeated that mantra to the teacher.”  Being rigid and overly literal is a common symptom of autism.

     Although the teacher patiently explained that it was the salesperson’s job to help customers find books, it took a long time to convince Sarah to ask for help. Even under the best of circumstances, Sarah hates asking for help.  In petulant tones, she insists that “she’s not a baby, and would prefer to be treated as an independent adult…” 

     Later I would explain the difference between random strangers on the street and people with service jobs—waiters, cab drivers, salespeople—who are paid to “help” all “independent” adults. “What’s the difference between going to a restaurant and asking for soda with no ice and asking for a history book at Barnes & Noble?”  I had asked Sarah after her 2012 Barnes & Noble meltdown. At the time, she did not have answer.

     Fast forward two years to Father’s Day 2014.  Sarah went into Barnes & Noble independently, asked for help finding a Father’s Day gift, paid for the book, and even asked another “stranger” for gift wrapping services.  It wouldn’t have mattered if she bought the Farmer’s Almanac, Space Travel for Dummies or a New York Times bestseller.  Our special girl gave her dad a very special gift.




Friday, June 13, 2014

Nest Shifts

     The way our family lives now has completely changed from ten years ago—but not necessarily for the better.  Ever since New York City started work on a subway for Second Avenue—where unfortunately our nest is located—our quality of life has gone downhill.  Even with the windows closed in our apartment, we’ve been relentlessly bombarded by noise: jack-hammering and blasting from the subway construction, along with the tooting horns from snarling traffic caused by closed off lanes. Perched 9 stories above 2nd Avenue, our  formerly pleasing “city view”  has been transformed by ugly trailers, white metal cylinders and a hodgepodge of tools and large orange and white cones framing an endless traffic tangle.   Up until recently, some of these structures spewed gas fumes, dust and mysterious microscopic particles. Have these emissions shortened our lives or increased our risk for lung disease? Who knows? Sometimes I feel like I’m in a revival of “Prisoner of Second Avenue,” Neil Simon’s black comedy about a middle aged couple trapped by circumstances….

     While external environmental changes have impacted our nest, internal changes have also profoundly affected our family dynamic. Perhaps most importantly, when our twins left home for college in 2009, we all began to live semi-independent lives.  Now that Sarah and Max, 23, have both graduated from college, we ALL yearn to live on our own.  What was once a relatively comfortable nest for a family of four, now feels crowded and tense.  There are no longer high school curfews or restrictions, but our young adult kids are less than delighted  about keeping their parents informed of their whereabouts and, for example, whether (or not) to expect them for dinner.  Other than showing up for classes and turning in papers with due dates, Sarah and Max have gotten used to doing everything—eating, sleeping, laundry—whenever they felt like it.  But now that they have returned to the nest, that kind of spontaneity no longer works. Half the time I don’t know whether to plan a meal or file a missing person’s report.

     Nevertheless, we have all embarked upon our separate-yet-overlapping lives. Since neither twin has secured full-time employment or become self-supporting, both have moved back into their childhood bedrooms. Five nights a week Sarah sleeps in her lavender twin bed with a moon and stars carved into the headboard. Friday and Saturday nights she sleeps at her boyfriend Jake’s house, (and so far she has managed not to bring home any bedbugs.)  During the day, Sarah is almost never home, but out and about: at the gym, with her friends, or at Adaptations, a program for young adults with disabilities at the JCC.  Not wanting Henry and me to worry (or for us to "bother" her by calling), our daughter has been kind enough to provide us with copious texts on her comings and goings. Next month these news bulletins will be less frequent.  During July and half of August, our daughter will be volunteering as an assistant teacher at the Learning Spring, working with kindergarten kids on the autistic spectrum.  After that, maybe she’ll be filming her movie, (and maybe not).  What will she do in September?  It’s anybody’s guess.

     It’s also anybody’s guess what our son will be doing.  Currently Max is working on a script and hoping his agent can help him find a writing position.  He sleeps at his girlfriend’s house most nights and comes home in the mornings when she goes to her job.   Reclining on his twin bed (green with fish carved into the headboard), he types on his laptop and guzzles Coke Zero.  Clothing spills out from his drawers and fills up a giant laundry bag.

     I try to tolerate the mess until Wednesday when the housekeeper arrives. (God bless that hardy soul.)  There’s no use fighting with Max, I’ve learned.   A much better strategy is to close the door to his bedroom and pop a few Tums.

     Simpler, but more painful, has been our separation from Sparky. Our beloved Norwich Terrier moved out forever six months ago. (See “For Love of Sparky, “1/31/14).  We have given away most of his stuff—doggy toys, treats, bowls, bed, clothing—to neighbors with pooches.  Of course we saved the two sweaters he had as a pup and a few other mementoes.  Although we tried to extend his life with chemotherapy, Sparky had other ideas.  After two treatments, our pooch departed for canine heaven.  Hopefully, he is enjoying endless treats and resting in peace.

      Speaking of peace, how much longer can we all stand to live together?  When I was in my early twenties, I couldn’t wait to leave home.  The moment I earned enough money to scrape by—at 24—I moved into a tiny studio and thought I’d reached nirvana.  Shortly thereafter, my parents sold our coop and downsized to a smaller rental.  After I left, they didn’t need the extra space, and the money from the sale of the apartment was very helpful since my father was older and slowing down.  I still remember how much fun my parents had finding and decorating a new “love nest.”

     Hmm…Maybe Henry and I should move to a two bedroom and escape from Second Avenue? Our lease is up at the end of the year; the rent is already pretty high; and completion of the subway is still light years away.  We’ve lived in the same nest for 23 years, while watching our building go steadily downhill.  Nowadays one of our two elevators is always broken.  A permanent sign in English and Spanish warns tenants to be careful because the elevator doesn’t always “level.” Every summer the antique air conditioning system breaks down more often, usually during the hottest days.  Instead of replacing the whole system—as the super recommended years ago—the owner prefers the cheaper solution of ordering a new part and letting the tenants sweat until it arrives. 

w     Once upon a time, when we moved into the building, there was furniture in the lobby. Nothing fancy, mind you, but there was a table with chairs, and a bench.  If the elevator was slow or the bus was late to pick up your child, at least there was a place to sit.  Not anymore.  When the furniture wore out, it was simply removed.  What happens now to the old people with canes, the working people waiting for car pick-ups, or moms waiting for their kids to get off the school bus?  We are all are out of luck.  Tenants who don’t like the minimal services are welcome to move out.  The landlord will be happy to rent the vacated apartment for hundreds more than he previously received.


     Maybe instead of paying another rent hike or waiting for our young adult kids to move on with their lives, Henry and I should move on with our own lives.  Is it time to shift from a family nest to a couple’s nest?  I don’t know, but I made an appointment with a broker to look at some two bedroom apartments.

Friday, June 6, 2014

Not So Simple Summer

     Summer is supposed to offer time to slow down and enjoy life’s simple pleasures, right?  Now that Arctic temperatures and relentless blizzards have given way –FINALLY—to sunshine and warmth, it’s a tremendous relief to shed all those layers of clothing and skip out the door in a sleeveless outfit with sandals. Children count the days till they‘re out of school, free at last from classrooms and homework.   Adults usually enjoy less pressure at work, casual dress on Fridays, and look forward to a hard earned vacation (or staycation). Eagerly, we all try to plan fun-in-the-sun activities (with plenty of sunblock).

     When my twins were little, summers were simple.  In June they went to day camp, and afterwards we rented a beach house in August. (I know, lucky us!)  Starting at age 9, my kids went to sleep away-camp for seven weeks.  Fortunately, Max and Sarah went to different camps, so we were able to see them off separately, and spend weekends in different states for each of their respective visiting days.  Most summers, as soon as both kids had departed, Henry and I went on trips: Ireland, Scotland, France and Italy.  Those trips were much needed  second honeymoons, times when Henry and I could rekindle our relationship and pay attention to each other instead of getting lost in the hectic needs of everyday life and our kids. (Of course, we scheduled carefully to be available for both camp visiting days.)  How I used to look forward to those vacations!
     Like all parents, I missed my kids when they were away at camp, but once I knew they were happy, I felt happy and free.  Unlike most parents, I had twins—with one on the autistic spectrum.  After a school year spent shuttling Sarah to therapists, writing notes back and forth to her teachers, fighting the Board of Ed, or looking for a new school, I was always exhausted when summer finally arrived.   Don’t forget, I was also spending time in the neurotypical world with Max and the mainstream moms, trying to ward off the heart break over how widely my twins’ paths were diverging.  For me, summer spelled relief, an antacid for body and soul.

     In 2009 when my twins started college, life became easier AND harder, inspiring me to start The Never-Empty Nest blog. That was 2011, when Sarah was a junior and Max a senior.  Helping my twins to solve their very different emotional, academic and social problems from afar turned out to be much more time consuming than I’d imagined.  But summers were still pretty easy to plan. Sarah took a summer course each June and volunteered as a teacher’s assistant at a special education school for July and half of August.  Max had various jobs and internships which were arranged to end mid-August.  Those last two weeks of August, we traveled as a family. Henry always meticulously planned a vacation for four with ambitious sightseeing the first week, followed by relaxing on a beautiful beach the last week.  During that precious vacation time, we recharged and bonded as a family before returning home to the September stress of dropping off our kids (a day apart) at two different colleges.        
     Now that both twins have graduated from college, planning our summer suddenly became complicated.  No longer do we have the foggiest notion what Sarah and Max will be doing or WHEN they will be doing it. Although Sarah will once again volunteer at the same school as the past three summers, nobody knows what she’ll do after that when September 2014 rolls around. In fact, right now in June there is NOTHING for Sarah to do because—for the first time ever— she’s not taking a summer course.  Trying to help her find a job or SOMETHING to occupy her time (now and in September) has become MY job.  Complicating the job search is the possibility that Sarah’s film, “Keep the Change” will start filming for 25 days in late August…or sometime in the fall…or possibly next summer.  (See https://www.facebook.com/keepthechangefilm)

     Max has one foot in New York and the other in California, as he tries to sell another television pilot while working on a movie script.  If my son is lucky, his agent will have him come back to California to pitch the new script to television stations.  If not,  he’ll  just keep writing here –and maybe there—with no timetable, ready to fly back and forth on a moment’s notice.
     Gone are the days when Henry can delight in planning a family vacation months in advance for the end of August.   No longer can he leaf through Frommer’s guides and gleefully calculate hotel points and airline miles to make our family trip fun and affordable.   It’s too late to lock in lower airfares or get those free nights at hotels.  Months ago I’d suggested that the two of us go away and leave our young adult kids to fend for themselves, since they’re out of our house most of the time anyway.  However, Henry worried about leaving Sarah alone for two weeks (more so than I did).  Maybe we could leave her for a shorter period?  Should we take Sarah with us, and leave Max home?  After all, Max is perfectly capable of taking care of himself, and we’d save a lot of money.  But how would our son feel if we took his twin sister on vacation and left him behind?

     Henry laments that some of the places he considered going earlier in the year—like Prague, Budapest, and Israel—no longer have flights available at the times we want to go.  Even if we knew exactly what our kids were going to be doing this summer, my husband still couldn’t figure out where we should go. All of the places on our bucket list—the Far East, Bali, Australia—are too expensive and require more time than any of us can spare.  As for simpler trips, (closer to home) Henry is NOT excited about North Carolina, Bermuda, or anyplace nearby.  Even though my husband desperately needs a vacation from the most vexing case in his legal career, he feels he just can’t plan anything.  

      Our family’s life is up in the air more than ever before.  There are too many unanswered and seemingly unanswerable questions.  We keep hoping for the “aha moment”—when a great escape springs to mind—but so far,  nothing has come up.  Meanwhile, summer is almost here and, for our family, it’s anything but simple.

Friday, May 30, 2014

Sarah's Next Fifteen Minutes

     Last summer Sarah co-starred in “Keep the Change,” a short film about two young adults with disabilities who struggle to find a romantic connection. (See “Sarah’s Fifteen Minutes,” 5/10/13).   Written and directed by Columbia University film graduate Rachel Israel, the film premiered at the Walter Reade and Paris Theaters and won “Best Film” before moving on to film festivals in Los Angeles, New York and Belgium.  After receiving lots of attention and accolades, Rachel has decided to expand “Keep the Change” into a full-length feature, using her original co-stars plus additional actors with disabilities.
     Sarah is over-the-moon excited about the prospect.  An avid moviegoer, she can’t wait to see herself and her friends’ faces up on the big screens at theatres in New York and all over the world.  My daughter expects to start filming the feature length version of “Keep the Change” sometime in August—if the producers can raise $500,000 before then.  But that’s a BIG if.  Sarah doesn’t completely understand that her participation in the movie depends on finding a lot of money in only two months’ time.  I’ve been trying to prepare her for the distinct possibility that the film’s production might be postponed. But she really doesn’t want to hear it (and to be honest, neither do I).
     In a kick-off effort to finance “Keep the Change,” I co-hosted a screening and cocktail party on May 28th at the spacious home of my oldest friend.  Parents and friends of people in the disabilities world were invited in the hopes that we could raise start-up money.  Also present were the director Rachel Israel and producers Summer Shelton, Anne Hubbell and Amy Hobby, along with my daughter and two other cast members.  After watching the short movie—which happens to be 15 minutes—Rachel and the cast members addressed the audience. 

     According to Rachel, “Keep the Change,” was inspired by her real-life, college experience of observing Danny, a classmate, being rudely rejected by the advances of each young woman he approached.  When Danny finally asked Rachel out, she realized he was “different.” (Later she learned he had Asperger’s and Tourette’s Syndrome).  Although Rachel didn’t date Danny, she agreed to be his friend and help him find romance. Rachel brought Danny to the JCC’s Adaptations Program, a social outlet for young adults with autism and other disabilities in Manhattan. There he met his first girlfriend.  Realizing that adults with disabilities yearn for love and acceptance just as neurotypical people do, Rachel wanted to make a movie that showed the similarity of emotions in all human beings and, hopefully, create greater appreciation of people who communicate differently.

     My daughter described “Keep the Change” a little differently: “The movie gave me my first opportunity to perform an important female role.  All my life I auditioned for plays at school and camp. Mostly I received no part or only a very small role. Rachel is the first person to believe in me as an actress.”  Sarah paused and smiled at her director. “She chose me to play the female lead because she thought I could do a better job than a mainstream actress.” (Rachel had auditioned 100 mainstream actresses before Sarah). “In some ways I understand the character—also named Sarah—better than anyone, because I know how it feels to struggle to communicate.  For me, and other members of the cast, “Keep the Change” is a chance to show the world that people with disabilities have a special voice. We want our voices to be heard and valued, not just tolerated.”  She smiled at me before sitting down.

     Bravo, Sarah! I smiled back. All I could do after her speech and Q & A session was wait and see if our screening and presentation were compelling enough for our guests to write checks. The producers invited everyone to contribute what they could to Artist’s Public Domain, a non-profit set up to handle the finances and provide investors with a tax-deduction.  Donations can be made on-line at http://fs.artistspublicdomain.org/campaign/detail/3083   

For New York readers interested in seeing the short “Keep the Change,” it will be screened at the sprout film festival on Sunday, June 1st at 2:30 PM at the SVA Theatre at 333 West 23rd Street in Program 6, titled ACCEPTANCE. (http://svatheatre.com/about/the-theatre/)  If that screening isn’t convenient, I suggest visiting the Rooftop Film Festival on Saturday, June 14th at 8PM in Industry City, Brooklyn at 8 PM.  http://rooftopfilms.com/2014/schedule/love-hurts-romantic-shortfilms/

Finally, if you have a moment, please check out Keep the Change on Twitter at https://twitter.com/ktcfilm and on Facebook at https://www.facebook.com/keepthechangefilm

Click the “like” button in honor of my Sarah and all the other brave, young adults with disabilities who long for intimacy and connection.  Their story deserves longer than 15 minutes.  In the hands of director Rachel Israel, the full length version of “Keep the Change” is sure to be even more poignant and insightful than the short film. As for Sarah, I’m hoping she can use her starring role to inspire special needs children and their families to keep working toward a brighter future.  Sarah can show the world that autism can have a different kind of face —a beautiful face with a dazzling, determined smile.