Wednesday, August 27, 2014

Nest Getaway

    Could my husband Henry, our family tour guide and travel agent, plan one more exotic summer vacation for our WHOLE nuclear family? Not this year.  (See “Ottoman Odyssey,” 9/6/13 for last August’s adventure). 
     For one thing, it was impossible to predict when our son Max would finish his movie script and return from Los Angeles to New York.  So how could Henry know which weeks to plan a vacation?  Further, when Henry considered the European cities he’d previously skipped, he didn’t feel inspired. Prague, Budapest and Amsterdam might be lovely, but they didn’t excite my husband the way Istanbul, Paris and Florence had.  We thought about Israel, but then another war started.  Two Malaysian airplanes went down, and I started to feel even more nervous about flying.  Besides, a long airplane ride and ambitious sight-seeing tours wouldn’t be good for Henry’s aching back.  Why spend our frequent flyer miles and hotel points on an uncomfortable flight to a destination that didn’t quite make the cut?

     I had a better idea: “Why don’t the two of us go away for a romantic weekend over Labor Day?” I suggested.  “Skip the airplanes, the hassle, the schlepping, and just go to a resort?”

     “What about the kids?” Henry always wanted to include Max and Sarah because he spent far less time with them than I did.

     “Sarah will be with her boyfriend,” I replied. “Max will be with his girlfriend the way he is every weekend.” Like my kids, I wanted time alone with my significant other.

    “Aren’t you worried about leaving Sarah?”  Henry worried.  “We’ve never left her alone before.”

     I knew he was thinking of all the weekends in the past when our little girl on the autistic spectrum had no friends and nothing to do unless we included her in our activities. “It’s only a weekend,” I reminded him “Sarah now leaves us every weekend. She’s 23 and busy with her own life.”  (Back when she was a screaming, socially inappropriate six year old, we would have sold our souls to know that one day our daughter’s life would be filled with friends and romance.)

     “Every year we’ve taken these wonderful family vacations….” My husband’s tone was wistful.

     “And this year,” I pumped enthusiasm into my voice, “you and I will have a wonderful weekend away together.  We’ll walk on the beach, stare at the ocean, get massaged… ” My voice trailed off.  “What if Sarah’s friends are away?” Henry persisted. “What if her boyfriend is busy over the holiday weekend?” As usual, he zeroed in on the worst possible scenario.
     “That won’t happen.” I assured him. “I’ll make sure she has a plan before we make our reservations.”

     It was time for Henry to read the last chapter of Emptying The Nest, where the author explores opportunities for couples to reignite their relationship after their young adult children go out on their own. (See “Nest Negotiations, 8/15/14).

     “Think of all the money we’ll save because it’s just the two of us,” I pep talked.  “We can always plan a longer, more exciting vacation for another summer.  Your back will be better, and we can go sight-seeing from dawn till dusk.  Who knows? Maybe by then the world will be a little safer too.”

     “Where could we go?”  Henry was finally starting to waver.
     Age old butterflies stirred in my belly. I was making progress. “What about Gurney’s Inn or Lake Mohonk?”I suggested.  “They both have spas and enough activities even if the weather isn’t great.”

     After a short discussion over the pros and cons of beach vs. lake, we agreed on Gurney’s Inn at the beach in Montauk.  I was almost home free. My next hurdle was trying to convince Henry to add an extra day onto the weekend, so we could drive home Tuesday and avoid experiencing horrendous Labor Day traffic as the grand finale of our vacation. Ever the practical pessimist, Henry argued for waiting to see the weather forecast before investing in a potentially rainy day. 

     “Think how nice it would be just to sit on a lounge chair under an umbrella,” I urged, “while everyone else is in cars creeping along on that miserable two-lane highway.”
     “Maybe we should go back on Tuesday.” Henry decided, perhaps remembering how upset I can become in traffic.  “Maybe you should call and book an extra night.”

      Before I had a chance to extend our reservation, Sarah came home gushing with great news.  “Guess what?” She burst through our front door. “I’m going to sing the national anthem at Convocation for the freshman at Pace University. It’s a SOLO!” Her voice rose with excitement. “The dean also invited me to sing the alma mater with her up on stage.  I’m allowed to invite my friends and family.  You guys have to come.”
     “Of course.  Just tell us when.”  I smiled.  This was my reward for the Mother Wolf letter I’d written the dean in April—about not choosing Sarah to sing the national anthem at her graduation (See “Singing the National Anthem,” 5/2/14). I’d accused the school of failing to honor or include its autistic spectrum students outside the classroom, suggesting that the college wasn’t really committed to acting in the true spirit of diversity.  At the time I’d mistakenly thought Sarah had been rejected from a choral GROUP, when in fact only one singer had been chosen.  Obviously, Sarah had demonstrated enough singing talent (and my letter had been persuasive enough) to convince the dean to offer her another performance opportunity.

     “Tuesday, September 2nd,” Sarah read from the schedule.

     Uh oh, there goes our extra day at the beach. “What time?”  I prayed for the afternoon.

     “Eleven thirty in the morning.” She chirped.

     “We’ll be there.” I bravely tried to match my daughter’s smile.  As it so often worked out, my reward for being the ferocious mommy advocate also brought about my punishment. 

     Before our twins were born, Henry and I had once driven home from East Hampton on Labor Day, and it had taken over five hours instead of the usual three.  To say I became irritable and claustrophobic was an understatement.  (Has anyone ever heard of a passenger feeling road rage?) I vowed NEVER again to drive home from East Hampton on Labor Day. But Gurney’s Inn at Montauk is even further away from the city than East Hampton. On the other hand, how could I miss my daughter’s performance?

     I would have to break my travel oath or lose my weekend alone with Henry.  Whenever I plan a romantic getaway, something pops up that takes priority.  On our 25th anniversary, I’d booked a lovely room with lake views, but had to reschedule at the last minute because it conflicted with Max’s final performance in a comedy show at Vassar before his graduation.  How could I skip that last show either? Henry and I ended up celebrating our anniversary two weeks early on a chilly April weekend. (Brrr!) The good news: we were able to enjoy both events. The bad news?  On our 25th anniversary we settled for a small room, facing the mountains instead of the lake.

     That time we got stuck with the mountains, this time it would be the torturous, stand-still traffic.  Maybe I’d convince Henry to leave a day early instead?  At least we could avoid traffic one way.  Predictably, my husband wants to know the forecast first.  Probably, the weather wouldn’t  matter because other people had already booked Thursday of Labor Day weekend long ago,  preferring the possibility of  rain over the certainty of terrible traffic. 

     Nevertheless and no matter what, we have to enjoy our nest getaway and RELAX (even if that means bringing a portable potty or popping a sleeping pill on the way home).  Still, despite the inconvenience, Henry and I are looking forward to hearing Sarah sing the national anthem in front of Pace University, her alma mater. Just the way we weren’t willing to miss Max’s last comedy show at his college, we wouldn’t miss Sarah’s solo for the world.

     So much for prioritizing nest getaways! Sometimes I wonder if there’s a magnet hidden among the twigs and straw that pulls us all back home. Or does the nest suck us back in like a vacuum? Honestly, are parents EVER free from the gravitational pull of their children? And vice-versa? I wonder what it would feel like if the nest really emptied….




Friday, August 15, 2014

Nest Negotiations

     This week I decided to post my very first book review on The Never-Empty Nest.  What could be more a propos than reviewing Brad Sachs’ Emptying the Nest, about “launching your young adult toward success and self-reliance?”  With my young adult twins half in and half out of the house, I obviously have a keen interest in the subject and a personal stake in negotiating this challenging transitional stage in our family life.
     As a psychologist and father of three young adult children, Brad Sachs has the right credentials and experiences to offer parents helpful advice. Sachs is also the author of well-known parenting books, The Good Enough Child and The Good Enough Parent.  So far, so good.  However, I was still a bit skeptical (as I always am). Could this well-qualified “expert” offer me any ideas on the best way to handle my 23 year old twins, a daughter on the autistic spectrum and a son with ADHD?  I had my doubts about whether my kids would fit into any of his five categories of struggling young adults: progressing, regrouping, meandering, recovering and floundering. Other than generic sympathy, would I be able to relate to any of the families whose issues were resolved in treatment with Sachs and used as examples in his book?
     The answer is a resounding yes—but not necessarily in the ways I expected.  Sachs begins with an insightful and compassionate analysis of why today’s young adults are having such a difficult time. Early on he acknowledges “a swelling generation of students who are accustomed to having their parents conscientiously play the role of their educational advocate, because the students have experienced learning challenges, attention deficits, autism spectrum disorders, and other neurological and psychoeducational difficulties.”  So, yes, I was hooked on page 10, realizing that Sachs was addressing families like mine.  He also talked about the revolution in psychopharmacology and how these medications may cause young adults to lose faith in their own inner strengths as they grew overly reliant on external help.  Hmm…this definitely rings a bell.  And instead of blaming the tough economy, Sachs believes that “many young adults have simply not been expected to practice financial self-sufficiency and restraint during adolescence, which hobbles their capacity to do so as young adults.” My twins both fit into that category (clearly our fault and not theirs).
     As I considered Sach’s five categories of struggling young adults, I could see both of my kids as a combination of meandering and floundering. (Great news, huh?) According to Sachs, meanderers are young adults who are moving ahead with their lives, but their growth is “more wayward, more often proceeding sideways, or sometimes even in reverse, rather than directly forward,” as seen with those who are Progressing or Regrouping. The flounderers are those who “have not yet summoned the capacity to leave their parents’ house and remain developmentally marooned, frustrating both themselves and their parents…  They remain adolescent in behavior and outlook, and thus they bring on themselves the kind of parenting that adolescents require, leading to a strained climate and high-octane clashes because the parents no longer want to raise an adolescent and the floundering young adult is tired of being treated like an adolescent.”  EXACTLY!
     Emptying the Nest breaks down the tasks of understanding—and then facilitating—the launch of young adults struggling to be independent in a way that is both simple and illuminating. Sachs presents this complex subject in what my daughter Sarah would describe as a series of “small manageable bites.” Grieving, Interdependence, Overcoming Fear, Identify Without Becoming Identical, Developing a Personal Philosophy are each covered in sections no longer than two pages.  In my opinion, the best of these sections was “Creating a Temporarily Toxic Home Environment.” Here Sachs describes the needs of many young adults to “spoil the nest so that it becomes a little easier for them to spread their wings and fly away from it,” and easier for the family members whom they need to leave behind. If the young adult creates enough conflict and tension, then flying away feels more like a relief than a loss for both parent and child.  I guess that’s why Max has kept his room messy enough to drive even the most laid back parent into a crazed fury. 
     Sachs also asks the reader to think about what type of family you have.  Is yours a “Centripetal Family” that causes young adults to feel overwhelmed by their loyalty to their family, unable to break free because of guilt?  Or do you have a “Centrifugal Family,” where the child feels neglected and pushed out of the nest regardless of whether he’s ready? If neither centripetal nor centrifugal describes your family, Sachs suggests a blended third type: “The Mission Impossible Family,” where the parents hang onto the child at the same time as sending him out into the world.  Rather than being truly independent, the young adult is allowed and encouraged to depart, but only with specific “marching orders,” including the need to report back regularly.  While it may be beneficial for parents to ask themselves these questions, my guess is that the majority of Sachs’ readers are “Mission Impossible” families—the most complicated and troubled group.  Cold, scientific terms like “centripetal” and “centrifugal” belong in a physics textbook, not a how-to book for stressed-out parents.  Periodically, I would confuse the terms and reread them, feeling irritated and slightly illiterate. (Aren’t I stressed out enough?) In an otherwise warm and direct style, this was my one small criticism.
    My favorite parts of the book were the last two chapters. Offering lots of good insights and advice, "Enduring Intimacy,” talked about the challenges and opportunities in a couple’s marriage when their young adult children leave the nest.  Aside from the sections on centripetal and centrifugal marriages, I found lots of helpful and inspiring suggestions: Grieving and Forgiving, Redefining and Reimagining Your Relationship, Communication and Renewal.  Particularly comforting was the advice to parents to forgive themselves, in addition to their young adult, for being less than perfect.  Sachs says it’s difficult to avoid seeing the various milestones in your child’s development as some sort of referendum on your parenting, especially during early adulthood, since this is when all of our efforts are supposed to finally come to fruition and pay off.  When these efforts don’t pay off—and the author guarantees us they won’t—we will scour our past trying desperately to figure out what we could have done differently to have created a better outcome.  A better idea, Sachs suggests, is to open up to all that we still can do as parents and as people.
      In the last chapter, “Dancing to the Music of Time,” Sachs offered more reassurance and comfort.  “It is extremely difficult to get parental love right, to be certain we are appropriately ‘in tune’ with our children,” regardless of their age or stage of development. We just have to hope we’ve been “good enough” parents, (echoing the author’s earlier book) “to stir in our children the capacity to rally their resources, call forth their strengths and overcome their liabilities when life becomes frustrating, difficult or overwhelming, as it inevitably will.”  When the nest emptying process is not going well, Sachs says the parents “should not harden into a position of resentment and indignation,” but try instead to open our mind and hearts to allow a larger perspective to emerge.  Both parents and children must use their collective imagination to solve the problem and find a creative solution.
                It all sounds great, but I still haven’t evolved into Henry Kissinger in my nest negotiations.

Friday, August 8, 2014

Shades of Autism

     When I saw the cover story, “After Autism,” in Sunday’s New York Times Magazine, I must confess to feeling both vindicated AND envious.  From the moment my daughter, Sarah was given the dreaded A-word diagnosis at 12 months old, I always believed in the possibility of a complete recovery.   Maybe it was magical thinking, but I had to wake up each day with the hope that I could somehow help my baby girl grow up, make friends, graduate from college and live an independent and productive life. Back in the early 1990s—before autism was an epidemic and Applied Behavioral Analysis (ABA) was the preferred treatment—I stubbornly believed that Sarah would one day catch up to her neurotypical  twin brother, Max.  It didn’t matter that most of the “experts” and test scores predicted that she would NEVER catch up—let alone graduate from college. 

     Diagnosed very early, I had hoped that intensive, early intervention would enable Sarah to emerge from autism completely, like the teenagers featured in “After Autism.”   However, unlike those success stories, Sarah’s progress was painfully slow.  We tried MANY treatment approaches: speech therapy, occupational therapy, Dr. Greenspan’s floor time, vitamin B supplements, cranial sacral therapy, skin brushing, joint compressions, special schools, along with a variety of drugs.  It was not until Sarah was seven and her behavior was completely out of control that we tried ABA (against the advice of her psychiatrist).  By age 7, we were told by the ABA therapists, “it might be too late” for Sarah to benefit, but we tried it for a few years anyway.  At age 10, she began seeing Dr. Harry Wachs at the Vision & Conceptual Development Center in Washington D.C. (now in Bethesda, MD).  I also took my daughter to an allergist and tried a modified gluten free diet.  There was no panacea, so I felt obliged to try everything. My strategy was practical and unscientific: throw enough you-know-what against the wall and hope for the best.  For reasons I still don’t understand, Sarah finally began to improve dramatically when she hit puberty.
     Did my strategy work?  Yes and no.  Like the old Virginia Slims commercial, Sarah has “come a long way, baby.”  My daughter is “high functioning,” (but not Asperger’s).   On the positive side, Sarah graduated cum laude from Pace, after earning an Associate’s Degree from Landmark College (also cum laude).  However, it took her 5 years (including summers), careful selection of a major, and a tremendous amount of tutoring.  Along the way, Sarah managed to make a small group of friends, find a boyfriend, and work summers, volunteering with young, special needs kids as a teacher’s assistant.  She even co-starred in a film, “Keep the Change,” about young adults with autism who struggle with relationships.

     Sadly, though, Sarah is NOT cured.  Try to have a conversation about what’s going on in the world, or about anything that isn’t simple or straightforward, and you will still see the symptoms of autism.  Her voice will grow loud and defensive.  As Sarah becomes agitated, she will repeat herself, talk in scripts, and probably stop making eye contact (which is nearly normal) when she’s on familiar ground.  There are still many life skills and social situations which pose a challenge.  We still haven’t convinced her that money doesn’t grow on trees or endlessly pop out of an ATM.  Then again, there are probably many neurotypical 20-somethings who haven’t mastered budgeting either.

     Of course I am profoundly grateful for all the progress my daughter has made.  I’m proud of Sarah for her courageous motivation and work ethic that made her many achievements possible. I know how much worse it could be from reading in “After Autism” about the young man who made little progress, despite doing the same ABA program for the same number of hours as another boy who has completely recovered.   Catherine Lord, one of the researchers in the Times article, who has studied autistic kids for 40 years, says: “I’m pretty good at what I do. But I can’t predict who’s going to get better and who’s not based on what they look like when I first see them.  In fact, I not only can’t predict who is going to turn out with optimal outcome, but I can’t even predict who will have high functioning autism and who will be low-functioning.”  That’s a pretty scary and discouraging statement coming 23 years after Sarah was born.  Frighteningly little has changed over that period of time. How is it possible, after billions have been poured into research, that no one knows what has happened to the brains of people who no longer have autism?  Were their brains different at birth from those of other autistic kids? Or were their brains similar at birth, but changed from treatment?
     Unlike 20 years ago, there are now people who are against eliminating autism. Welcome to the world of neurodiversity.  Ari Ne’eman, president of the Autistic Self Advocacy Network, says “autism isn’t an illness in need of a cure.” He believes that certain qualities of autistic people, which don’t conform to society’s norms, are actually valuable to a person’s identity and to the world.  As always, Temple Grandin, the famous autistic author and animal scientist is the prime example.  Grandin has always believed that her autism—which manifests in intense focus on details and unusual visual-spatial skills—enabled her to design humane slaughterhouses for livestock. Furthermore, Ne’eman argues, “What proof is there that those who lose the diagnosis are any more successful or happy than those who remain autistic?”

     Ne’eman has a point.  Carmin Diflorio, a no-longer autistic 19 year old said: “When I was little, pretty often I was the happiest a person could be. That went away when my sister started teasing me, and I realized that (hand) flapping wasn’t really acceptable.”  I still remember Sarah flapping her hands with joy and excitement, but I also remember my daughter wouldn’t let anyone HOLD her hand.  Trading in hand-flapping for hand holding has enabled my daughter to connect with a boyfriend, and might one day help her realize her very normal dream of getting married.
     The truth is nobody knows whether a person with autism is “better off” with or without the symptoms.   Lower functioning people with autism are unable to communicate their feelings on the subject.  Higher functioning people with autism who ARE able to communicate their feelings and preferences cannot speak for the entire spectrum.   As a parent, I honestly wish my daughter was among the 10% of autistic people who made a full recovery.  That does NOT mean, as Ne’eman suggests, that I’m really saying ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child.’ I wouldn’t trade Sarah for anyone.  (Ne’eman obviously has no idea what it’s like to be a mother.) What I want for my daughter —and what I suspect parents of other autistic kids want—is for their children to be able to voice their own feelings in this complex conversation.     
     I’m glad there’s a conversation that de-pathologizes autism.  Let’s find new ways to talk about autism, and let’s hear from the young adults on the spectrum who were yesterday’s kids.  But we should listen to ALL of them, not just the ones who articulate best (or loudest). Let’s not marginalize (or ignore) the voices of all the children on the spectrum who CAN and do benefit from medical and other therapeutic interventions  Early treatment of autism—whether or not it “cures” the child completely—often makes a tremendous difference in the quality life for the child AND the family.  Sarah can tell you.


Friday, August 1, 2014

Social Insecurity Revisited

     Social Security is supposed to be a catch-all financial safety net for retirees and Americans unable to work because of physical or mental disabilities, right? Talk about a misnomer! The truth is there is NOTHING “social” about the service (or lack thereof). “Social” suggests a warm, friendly atmosphere with caring, helpful people. “Security” conjures up images of protection and safety. Conceived by Franklin D. Roosevelt in 1936, Social Security was a great idea. But sometime between 1936 and 2014, Social Security took a few wrong turns and became an oxymoron.

     Our initial visit to the Social Security office seeking disability payments for our daughter, Sarah, (on the autistic spectrum) had been a nightmare montage of endless waiting under infuriating conditions, (see “Social Insecurity,” 9/27/12). After that, I figured we had at least a few years to recover before returning for a “review” session. However, after Henry’s 66th birthday on July 7th, he decided to apply for retirement because he learned that our disabled daughter might be able to collect half of his benefits. That’s DOUBLE what she currently receives –a HUGE difference for our daughter.

     Was Social Security going to come through for Sarah? Maybe FDR’s institution would last just long enough to offer our daughter some security? Will someone please pass the smelling salts? 

Henry was told that he didn’t even have to apply in person. Instead, he could apply for his-and-hers benefits by scheduling a conference call. Better yet, Sarah might not need to be present. Sound too good to be true? You betcha! I was not the least bit surprised when the Social Security representative called our home and asked to speak on the phone with Sarah only, minus any pesky help from her lawyer father or (Wolf Mom) me. Leaving our daughter to be interviewed alone over the phone was out of the question, and so another in-person appointment at the Social Security office would have to be endured.

     To begin with, when I made the appointment with Social Security, they gave me the wrong address! Yes, that’s right: Social Security directed me to 230 West 48th Street, instead of 237 West 48th Street, where the office is actually located. You may be wondering how that’s possible.  However, I assure you that Henry and I were misdirected by Social Security personnel, not once but twice. I can only guess they were hoping that we (and everyone else) would get lost and eventually give up. For the record, there is NO building at 230 West 48th Street. It simply doesn’t exist. This fictional address might be amusing if you were watching a Steve Martin and Goldie Hawn get stranded in the remake of "The Out of Towners." But as New York City natives, wandering up and down Broadway (wondering if we’d lost our minds), there was nothing funny about our situation. Especially since we were already worried about providing for our disabled child, and in so doing, we were starting to face our own mortality.

     Eventually, a random stranger provided me with the correct address, but bad news was already waiting when Sarah and I finally arrived at the 5th floor office of Social Security, where we found Henry seated and doing legal work
    “It’s going to be a very long wait.” He informed us, looking up from his papers with a sigh.

    “How do you know?” I plopped into one of the hundred plastic chairs, noticing that an alarming number of them were filled. “Don’t we have an 11 AM appointment? Aren’t we in the computer?”

     “I checked in at 10:30, but the receptionist didn’t give me a number this time,” Henry replied. "I asked the supervisor, and he said they would call Sarah’s name. But he warned me that won’t happen for a long time.”

    “How long?” Last time, when we had an 11 AM appointment, we never ate lunch and didn’t leave Social Security until after closing time at 3:15 PM. While starving, I’d read two old newspapers, even finishing the puzzles, and had plenty of time left over to feel my stomach digesting itself. This time I’d brought a book, (but not lunch.) I was beginning to panic. Was it possible that Sarah and I would be forced to miss an important doctor’s appointment scheduled for 3 PM?

     “Probably we’ll be here for hours. The supervisor asked me to let him know if we decided not to wait, so he could cross us off the list.” Howard’s voice had the tone of an attorney, accustomed to long waits in courtrooms at inconvenient times and in uncomfortable chairs.

     As my husband returned to his legal work, an elderly Chinese man entered the waiting room. He hobbled up to the receptionist and began asking questions in Chinglish. Unfortunately, the receptionist was disabled and had a speech impediment. The Chinese man spoke very little English. Intelligent or useful communication was impossible. In desperation, the Chinese man approached an Asian woman, who was also waiting for her appointment, and asked if she spoke Chinese.

     “Sorry, I’m Korean,” she replied, embarrassed.

     Undaunted, the Chinese man turned to the armed guard, sitting at a desk. “Men room?”

     The guard held out a key, and he shuffled off to the one men’s bathroom which was occupied.
     “Key-no-work. Need bafrum,” he told the guard.

     “The key works, but someone’s in there. You need to wait.”

     For a moment, the elderly man looked like a flustered five year-old who’d waited too long for a toilet. I was afraid he might pee on the floor, but instead he sat down with the air of someone used to long waits.

     By 12:30 PM, my patience had run out. Henry was calmly reading and underlining a legal document; Sarah was resting her head on my shoulder, half asleep. My stomach was growling, and I was tired of sitting (and sweating) in a plastic chair. “I’m going to check with the receptionist.”

     “Good luck getting ANY information from HER.” Henry chuckled.

     “Please-sit-down-someone-will-be-with-you-soon.” The receptionist chanted in a mechanical tone like a recorded announcement.

     “How soon?” My voice rose. “You said the same thing 45 minutes ago.”

     She shifted in her chair uncomfortably. “You’re next. Please-sit-down and—”

     “I’m NOT sitting down until YOU or SOMEBODY gives me some information,” I exploded. A micro second later, I glanced over my shoulder to make sure the armed security guard hadn’t reached for his gun.

     “The representatives are all out to lunch now.” The receptionist shrugged.

     Everybody here is ALWAYS out to lunch… I thought. “When do they return?” I said out loud.

     “They should be back at 12:45 PM.” Finally, at 1:15 PM, Sarah, Henry and I were ushered beyond the locked doors and plexiglass windows to a metal desk where a very kind young woman named Ms. Bonilla apologized for the wait. We sat in office chairs while she tapped at her computer to bring up Sarah’s information. The good news was that we’d applied for Sarah’s Social Security while she was still 22. That meant we didn’t have to fill out new papers, repeat her life history, or send in medical reports again. The bad news was that we needed Sarah’s original birth certificate to establish Henry’s paternity (and her entitlement) to benefits. Assuming Henry could locate the original (a copy was unacceptable), someone would have to bring the birth certificate to Ms. Bonilla on Monday and wait for her to make a copy. Why had no one instructed us to bring this all-important document to our meeting? Probably for the same reason we had been given the wrong street address.

     Social Security, like most insurance companies, makes it as difficult as possible for people to collect money. In their defense, fraud is rampant. Plenty of healthy people who are capable of working cheat the system and collect disability payments. Recently, a“60 Minutes” segment exposed attorneys who have been enriching themselves by helping healthy clients do the necessary paperwork to receive undeserved disability payments. Flagrant examples of cheaters who have been caught include a “disabled” man on jet skis and another guy hauling an enormous sailfish into his boat.

     It’s no wonder that Social Security is scheduled to go bankrupt in 2033. Medicare will be exhausted even sooner—in 2026, according to a “Government Programs” article on Google. Those dates are approaching faster than most people think: 10,000 baby boomers reach retirement age and qualify for Social Security benefits every day. As usual, Washington has been unable to reach an agreement to strengthen the finances of our government’s biggest entitlement programs, which added up to about 38% of federal spending last year. Meanwhile, Obama has already offered to break his 2008 re-election campaign pledge not to cut Social Security Benefits. In negotiations with GOP leaders, Obama has agreed to adopt a new measure of inflation that would give Social Security recipients smaller cost-of-living adjustments (COLAs). For an average 85 year old man, that would mean a $1000 reduction in Social Security benefits.

     What do the proposed cuts mean for Henry, Sarah and the rest of us? I have yet to find out: not knowing is part of social insecurity...

     As for our case, Henry located Sarah’s original birth certificate and delivered it to Ms. Bonilla with only a half hour wait. He recognized Ms. Bonilla’s supervisor and asked if he could bring her the birth certificate.

     “That’s against Social Security protocol,” the supervisor replied. “Take a number and have a seat.”

     But Ms. Bonilla had promised on Friday that she would not make Henry wait, and true to her word, Ms. Bonilla came out to take the birth certificate, copy it and return it to Henry.

     Now all we have to do is wait for a decision. Will Sarah receive half of Henry’s benefits? Social Security is supposed to let us know in the next two months, but I’m not holding my breath.

Friday, July 25, 2014

Global Numbing

     Growing up as a baby boomer, it seemed like the worst thing that ever happened was the Vietnam War.  My friends and I worried about all the young men (some of them boyfriends) who might be drafted and die in a war many people believed we shouldn’t even be fighting.  “Make love, not war,” was our slogan.  The 60’s were a time of economic expansion, when there was still a middle class, when young people still valued idealism. (War is not good for children and other living things.) Back then it seemed like we cared about each other and our generation thought we could make the world a better place.  In some ways we succeeded; after all, there have been profound changes for minorities and women, (although more changes are still needed.)  But back in the 60’s, no one talked about—or to my knowledge—even considered global warming.

      Life was a lot simpler 50-plus years ago.  The worst problems of the day seemed like minutiae compared with the violence and horrors reported now.  Of course there were criminals and psychopaths; planes were hijacked, presidents and innocent people got murdered. But nothing in my lifetime compared to 9/11,. No one in the civilized world ever imagined terrorists becoming suicide bombers and using civilian airplanes as weapons to destroy New York’s financial center, the Pentagon, and the White House—along with the lives of thousands of families.  The failure to imagine and prepare for that  evil cost us dearly.  It took months and years to process the terrible events of 9/11, graphically portrayed and replayed in the news media.  During that time we had to figure out ways to protect ourselves in the future.  For the first time in years, the rest of the world empathized and grieved with us (until we went to war with Afghanistan and Iraq).  Collectively, we all suffered from post-traumatic shock, assimilating, grieving, trying to move on with our lives and find ways to prevent this type of tragedy.

     Unfortunately, even in the short time since I started this blog, tragedies and violence have proliferated at such a frightening rate that I (along with most of the rest of the world) find it difficult to make sense out of it all.  How are we to understand the shooting of 26 first graders and their teachers in Newtown, CT?  Or the nuclear disaster in Fukushima, Japan; the kidnapping of nearly 300 school girls by the Boko Haram in Nigeria? What about: the mysterious disappearance of a Malaysian airplane over the Indian Sea; the kidnapping and murder of three Jewish teenaged boys in Israel followed by the revenge murder of an Arab teenager and a new war in Gaza; the killing of 298 innocent people on another Malaysian plane, (probably) mistakenly struck by a Russian missile?  I’m sure I’ve left out many other atrocities here and abroad that resulted in widespread bloodshed.
     Oh yes, I almost forgot about global warming!  All those photos of the ice caps melting, sad looking polar bears, and the threatened extinction of various plants and animals essential to the continued health of the human race are quite alarming. Although most sane individuals agree that our planet is undergoing profound climate change, there are still people (most notably from the businesses emitting destructive pollutants) who deny the situation exists. Since the 1970s, temperatures have risen faster than ever before, with the 20 warmest years beginning in 1981 and all 10 of the warmest years occurring in the past 12 years.  Sea levels have also been creeping up.  Researchers project that by 2100, sea levels will be 2.3 feet higher in New York City.  While no one can say whether the next century’s super storm Sandy will swallow the Big Apple, scientists are predicting that heatwaves, droughts, blizzards and rainstorms will continue to occur with greater intensity due to global warming. Moreover, 97% of climate researchers agree that global warming is real and caused by human activities, especially the burning of fossil fuels that pump carbon dioxide, methane and other greenhouse gases into the atmosphere.

     What do we propose to do about all of these costly and overwhelming problems? Thanks to government gridlock, our elected officials here in the U.S. have been unable to agree on doing anything about anything.  Politicians in the rest of the world don’t seem to be doing a better job—and many are doing far worse. Witness the travesty of President Putin denying responsibility for providing the missiles to Ukrainian separatists who shot down the Malaysian airplane last week. And how many more innocent school children will have to die because of the omnipotent gun lobby?  If people can’t take responsibility for the violence and destruction happening daily all over the world, RIGHT NOW, how can we persuade people to worry about what happens to our planet over the next 100 years?  

      Global warming has been slow and insidious, while front page news bombards us daily with new stories of tragedy and bloodshed.  Instead of being galvanized into taking action, inspired by outrage and empathy, it seems like our hearts and minds have shut down. We’re overwhelmed and overstimulated. It’s all just too much.  What could be worse than killing innocent people and destroying the Earth?  I’d call it global numbing.

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.