A Bewilderment of Pain: Folks may differ over the quality of the film or Mr. Clooney’s portrayal of the beleaguered dad descended from Hawaiian wealth and aristocratic lineage, but something powerful was rendered here. This film condensed a familial process in two hours that takes years to achieve: alienation from emotional connectedness amongst all four members, with the core of the disorder in the relationship between husband and wife, the broken heart of the home. And something else that is so familiar to me as a clinician: the bewilderment of pain that Clooney convincingly portrayed throughout much of the film.

Years In The Making: It takes years for couples to descend to the point of alienation that is capably rendered here, yet Clooney’s character appears surprised and bewildered as he stumbles across the inescapable evidence of the marriage’s decay when he learns that his now comatose wife had an affair, news to almost no one else but him. I have seen that look of “How did we get here?” on the faces of many couples, yet, one asks, weren’t you a part of the getting there, and still they are stunned, stunned. And not necessarily because an affair has been revealed. Sometimes it is just because someone is done or both are waking up to a huge void in their nest, a hollowed-out space between them left behind by kids growing up, moving out and taking what is left of the family glue with them.

The Unattended Coupledom: There is an energy captured in the Descendants that matches my observations of couples in real life, real-time, an energy of action over observation, emotion without attention, reaction without wonder. Lives laced together and seemingly propelled by a sensibility based on the belief that doing is everything, “running” is the metaphor for emotional powerlessness, while the action of paying attention to what we are doing, saying or feeling with each other, has no home here. The powerful spectacle of the comatose mother of two, whose breath of life is mechanically managed, stands for all that remained unspoken and unattended to in the marriage, in the family. A suitable metaphor for what is now no longer retrievable. And as Clooney bends to say his final goodbye to his wife, there seems to be a shallowness in his grief, something ultimately hollow, perhaps a flaw in the acting, yet consistent with the suggestion of a marriage that never deepened, a marriage neglected and unattended to.

The Observant Coupledom: Attention paid in real time to the thoughts, feelings and actions of oneself with one’s partner is fundamental to a healthy connection. Hindsight is better than no sight and when couples learn the importance of taking note of moments with motives other than to judge good or bad, who was right, who was wrong, blame or defend, a real dialogue of intimacy can occur. The Descendants hinted at reasons for the couple’s divide that seemed to stem from a typical Coupledom neglectfulness: no one was really listening to the other, or to themselves, and solutions were sought in distractions, fast boats, professional ambition, money and social life. This is a no-fault tragedy. This couple did not have the tools to make it different. No one ever taught them how to be real with their own needs and real with another’s. Hurts were suggested, apparently not read as hurts but as demands. Folks just don’t know how to talk the language of emotional longing or need and their listeners don’t know the code needed to decipher the communication. The conversation “drops” and the line of communication goes dead.

Clueless No More: Clooney’s character Matt King showed only half of the King Coupledom but you get the sense that these were not people who stopped, listened and learned. The marriage devolved into the parallel play of each doing their own thing with joint public appearances at parties and or kids’ stuff. Even the daughter’s obvious acting out was not enough to alert these two to the rot of their relationship. No one should ever let that become their marriage. Awaken your partner to the absolute fact that unless “we learn to share some feelings, and try to understand each other better and ourselves” we are going to “descend” too. Clooney’s character had the typical wake-up call of an affair which might have forced them into couples therapy. But for their Coupledom it was too late. Don’t wait for a “wake-up” call in your marriage. If you need help to learn how to be that “observant couple” seek out a couples therapist and learn the language of intimacy now.

If viewed properly, The Descendants could be curative. 

©Jill Edelman, M.S.W., L.C.S.W. 2012

Oh, Lazy Me: Here is the lazy part. My patient was traveling so I was uncomfortable tracking her down to change her time, as she was new to my practice. Instead I wrote numerous emails to the ABD (Ability Beyond Disability) staff telling them to call me when our daughter was with the doctor, also informing them of her “double vision” issue (which our daughter also planned to tell staff and the doctor). I reiterated that several times and sat through my session with cell phone nearby, having first informed the patient of the impending call. No call ever came in. Earlier that morning the staff person in charge emailed to ask again (!) if she should call me when with the doctor. Wasn’t I clear enough? I emailed back yes and never heard further from her. (Later I find out that she doesn’t have access to her email when on the road, though I emailed back to her within fifteen minutes.)

Again, Who Was The Decider Here? My only conclusion was that nothing much occurred so after the session I called the staff. Oh yes, all went well. The doctor (“He is so nice and funny”) gave our daughter a choice, glasses or an eye patch. She chose the glasses and skipped across the hall and ordered a pair. OH. Then I spoke to our daughter and got the real story. The choice was glasses or surgery (and probably the patch thrown in for a gal whose heart belongs to that great pirate Johnny Depp). And who made this decision? Our daughter and a young staff woman, without me.

Fit To Be Tied: Don’t you just love that expression, if you really think about the visuals here? But I wasn’t tied, I had both arms free and put in a call to the doc. The doctor returned my call and reiterated the choices: surgery or glasses. And again who made that choice? What was the doctor thinking? Honestly. I am our daughter’s guardian yet even the doctor did not seem to notice that a decision was being made by a staffer and a special needs adult. Hardly kosher and certainly not legal.

Notices Went Out: I actually felt scared, the kind of scared that goes along with “loss of control.” Now I knew all about this surgery for Diplopia. We had discussed it years ago. The doctor remains skeptical that our daughter will be able to sit through the snipping of a small muscle in her eye with just a local anesthetic. “She will giggle.” I don’t think so doc. You make her giggle. And yes, no harm in trying the glasses again. But never again will anyone make those decisions for our daughter except her guardians, unless there is an emergency. What did we sign all those papers for if no one is trained to understand their purpose? My question to the higher-level staff was how did this fundamental procedural issue get missed? Was the staff out that day or oops, forgot?

Oh That Slippery Slope: Here is that timeworn parental dilemma. We don’t want to ball out the staff (which for all parents at one time or another include teachers, camp counselors, principals and coaches) because they can grow to hate us and take their hatred out on our child. It is a very slippery slope to register a significant concern without raising your voice, without threatening anyone’s job, without using four letter words, without worrying that staff will take revenge on you through your child, yet making absolutely certain that this kind of thing is never, ever going to happen again. Also, I really don’t want to humiliate or maim anyone. These are good people but that is hardly the point.

Stupid Stuff: The senior administrative staffer knew just what to do with me. She got it and said all the right things when I tracked her down on the phone. The junior staffer defended her even more junior staffer with some gobbledy gook about being sure there is a “reasonable explanation.” First get the facts, don’t just stand by your staff by saying “I’m sure there is a reasonable explanation,” when you actually have no idea. And I didn’t even attack the staff. Honestly, can’t people who are in a bureaucracy still retain the ability to have normal human intercourse without platitudes, jargon and BS?

My point was basic…putting aside for the moment my five ignored emails and misunderstood messages, someone didn’t understand basic protocol. Medical decisions are made by guardians unless there is an emergency, not low-level staffers on an outing with a client.

Our Nightmare: This is what parents of special needs children fear most. That someday we will not be around and our adult children will be dependent on “providers” who are misguided, indifferent, distracted or destructive and no one will be there to stop that. That is why I became so frightened because this incident gave off a whiff of incompetence that unsettled me. Even now as I am writing this, I think how I need to emphasize to family who will oversee our daughter’s care after I am gone or going how much monitoring and checking in is necessary. This little excursion was relatively harmless, though I will have to revisit it all again after the glasses are worn for a while. But it was a wake-up call. Double vision indeed. Clear vision at all times, that’s what mom needs. And another wake-up call. When it is important, verbal confirmation is still best, despite all the emails and texts in the world. So I can say “Repeat what I have just told you so I can be sure we are both clear-sighted and on the same page.”

Choking Potential: But these people are really good too. For several years now I have worried about our daughter’s eating habits. Specifically that she puts too much food into her mouth at one time and adds more before she has thoroughly chewed and swallowed the previous intake. I don’t know if this habit developed during boarding school, feeling pressured to eat fast to get to classes and chores or what, but recently her rapid devouring of big forks full of food became really scary. My attempts to provide verbal cues were treated like so much mother vapor and blew away just as fast as they were emitted into the air. But lo and behold, the residential coordinator and staff noticed the dangers as well and contacted me to discuss the matter. Wow, I thought, they really are on the ball.

A Plan: Together we came up with a plan of action. Knowing what a visual learner our daughter is, I suggested the use of films that they found and viewed with her, mostly on choking and the Heimlich maneuver. The team then rapidly put in place a series of cues to enable our daughter to stagger her eating pace, taking sips of water, breathing between bites, chewing and swallowing thoroughly, putting less on her fork, and all coordinated with her apartment-mate who had developed similar habits. They are all working on this as a team, and our daughter, who loves to learn about the body, is soaking up the information including the hazards of ingesting too much food with the resultant consequences of indigestion, heart burn, and of course, choking.

Lessons Learned?: Too many to mention. But one is very clear. It has always taken a village or a team to teach our daughter many critical things and though I have to keep my watchful gaze on all, it is still very reassuring that I am not doing this alone.

©Jill Edelman, M.S.W., L.C.S.W. 2012

Try A Little Humor With The Heart: Now I am thinking, how you approach Valentine’s Day each year can mirror where your Coupledom is developmentally. Looking through articles on phases of marriage has produced little inspiration here. So I have decided to create my own developmental phases for the purpose of this Valentine post:

Phase 1: The Valentine Date For Two: Once you have established that you are a “couple” that first Valentine should be the easiest and perhaps the most traditional: candy, jewelry, a massage or a romantic dinner for two. Sounds simple but if this first Valentine is fraught with angst or disappointment, turn it around by talking about how to make it better this year or next year. Don’t use it to tarnish the new bond; rather to polish it up for the future. Without removing all the sparkle, see if you can unearth your expectations and double-check if they make sense. If not, create something more satisfying and realistic together, based on who each of you is and how the Coupledom you create together can reflect both your styles.

The Yin Yang: It is typical that the yin yang characteristic of mate selection (opposites attract) usually translates into one as the romantic, the other the pragmatist. The romantic will paint the red, pink and perfect picture of lovers’ bliss but the pragmatist might speak of budget, time allotment and location. Rather than fight or feel insulted, recognize that you are looking at a sliver of the shared life as it really is: a mixture of two potions shaken together to create an original blend of both. Drink up.

Phase 2: Valentine With Responsibilities: Now you are no longer a blend of two but a melange of at least three or more. And that doesn’t mean just children. Could be a mortgage, rent, demanding boss, a dog, two cats, academic deadlines, children or all of the above. Now Valentine’s Day means sitters, perhaps an exchange of cards before bedtime or left at the breakfast table on the way out to catch the train. Maybe a promise of a weekend away when the baby is weaned or the bonus comes through. How does this Valentine sound now? BORING! Yes, but here is the moment for a developmental leap. Squeezing the “we are lovers, right?” between the sheets of this phase of married life is more complicated but it is also not forever. Keeping a perspective on the transient nature of these passages can place a more accepting expectation of this lovers’ celebration. Figure it out together, don’t set up your spouse to disappoint you. Look at his or her day and say, hey let’s make a moment that works for both of us.

Shared Humor Is Sexy: Opportunities for humor are everywhere, just check out popular sitcoms or chick flicks, The New Yorker Magazine cartoons or YouTube. The usual dirty diaper joke or the coitus interruptus youngster who is having a nightmare moment in the other room is always available for a few yuks. Rather than personalize the obstacles or realities that interfere with your Valentine dream, recognize the great bonding opportunities of shared humor, as sexy an exchange as anything can be, and the “let’s be real together” rather than the very corrosive “let’s test each other’s love or sexual desire.” No testing! Pleasing yes, but with a useful dose of what is possible, likely and mutually acceptable.

Phase 3: Valentine With Trust and Wisdom: Okay, so now you have survived the early years of marriage and the kids are big enough to let you guys go out by yourselves. Money is still tight and time remains limited but out of the house is doable. Is there trust that you are both on board to care for and love each other? If so, Valentine’s Day should be more of a mutual “let’s have an adventure” rather than try to resurrect the sparks of a decade or more ago. Those sparks ignite naturally. But you have so much more now, too. You have the wisdom of knowing what works best for shared enjoyment. And if you don’t know yet because you have been sacrificing “personal” wants for family unity then dig around together to figure that out. “What would be fun for you?” “What attracts you?” This is an opportunity for each of you to fantasize your Valentine with the other and try to put together a mix of both visions. Is it a day, a weekend perhaps or a long awaited vacation? Budgets, time constraints and inclinations are all equally significant. But don’t fight. If your ideas clash initially, leave the conversation for another day. Or surf the web together. Use your wisdom and trust to make the matured mixture of a shared life into a fun outing to celebrate a love of some duration. And watch out for the sparks that might be ignited by kindness and respect. They can be mighty powerful.

Phase 4: To Infinity & Beyond: How do senior couples mark Valentine’s Day? No, this is not a setup for a joke (but I do like a good joke so please post some on the blog as comments). Senior couples who have seen many Valentine’s Days together might go for novelty. Or perhaps nostalgia. For new couples who are seniors, see Phase 1 and have fun. For this post, I would love their wisdom on what keeps love alive over the decades. My beliefs are evident from these concepts: value your Coupledom (that third entity that you create together in which your relationship resides), think outside of the box, be flexible, try something new and keep a healthy perspective on it all.

Happy Valentine’s Day.

©Jill Edelman, M.S.W., L.S.C.W. 2012

What Does That Dream Look Like Today? How do you paint a picture of a dream? How do you match the paint colors with the images of the mind? Maybe Salvador Dali could answer that question but as a non-painter yet a committed dreamer, I can vouch for the fact that a dream can be transferred from the mind to the canvas of a life. Even when it is not your life. And that, so far, is what has occurred for this mother of a special needs child. My dream for our daughter has been realized in her world today. Imagine that!

A Typical Week: Our daughter’s “work week” begins at nine Monday mornings at her DSO (Day Services Option) program where a group of recently “aged-out” young adults attend six hours of social programming at Ability Beyond Disability’s Bethel, Ct. headquarters. At three o’clock our daughter then returns to her apartment and either exercises at the Ridgefield Park and Recreation Center with her apartment-mate and staff or attends another activity. (For a while she was attending a yoga class.) Tuesday she returns to the DSO where they might go bowling, attend a music class, help with volunteer activities or some other pursuit. Tuesday evening she and her apartment-mate participate in Angelfish Aquatic Therapy. Wednesday is errands and an apartment meeting with the behaviorist and other staff and a physical activity. Wednesday evening includes a special outing. Thursday is a vocational day where our daughter helps set up “chair yoga” at the senior residence Ridgefield Crossings with her vocational life skills staff. Thursday evening she participates in SPHERE, a theater program. Friday she goes to two jobs: ROAR, the animal shelter where she helps clean out litter boxes and receives training in how to care for the animals, and The Complete Cat Clinic, where she helps to groom the cats and socialize the kittens. Throughout the week our daughter does her chores, shops and cooks with staff who work with her to increase skills for independent living.

Weekends: Friday night is usually veg-out time at the apartment. Saturday she has her Pegasus Therapeutic Riding Program, though during the winter she attends their un-mounted program and has just acquired the skill of taking a horse out on a lead. Saturday and Sunday afternoons are replete in a variety of stimulating activities: going to a museum, a nature center, a flea market, theater, a fair or a movie. And interspersed throughout is quality time spent with her family, who both drop in to take to her lunch, or on an errand, or for longer outings to extended family functions, theater, whatever moves us. The ease with which she can be a part of our lives and we a part of her life delights us all in a profoundly meaningful way.

What A Leap: Does our daughter like her new life, and her new home, and her apartment-mate and staff? Totally. Have there been glitches? You bet. But what a leap from twelve months ago when all was a dream. I am aware that the perfection of this moment is not forever. Nothing ever is. But I can dream that the worst is over, that the formless canvas of her adulthood that rippled through our lives for two decades has filled in beautifully and will never be as frightening again. Fingers crossed.

©Jill Edelman, M.S.W., L.C.S.W. 2012

The Beast Of Narcissistic Vulnerability In All Of Us: For some couples, the role of co-narcissist is fixed and rigid. The co-narcissistic partner is valued by the other as long as they satisfy their partner’s spoken and unspoken needs at the expense of their own individuality and emotional reality. The co-narcissist has been trained in childhood to subsume their identity into the folds of a parent’s needs, their day-to-day security in the “loving” parental bosom is only as good as their ability to mirror that parent’s greatness, goodness, talent, beauty, genius, or perfection in all things including parenting. By the time these youngsters reach adulthood, integrated into their psychological DNA is a finely attuned vigilance to another’s needs, along the lines of a lady’s maid or his lordship’s obedient servant, whose survival rests on anticipating and gratifying the lord’s or lady’s every whim. If they fail at their task, the beast dwelling within the seemingly normal human facade breaks out and roars, whines, whimpers, accuses, withholds or withdraws, with the taint of unworthiness, incompetence or cruelty smeared all over their partner’s character and self-image. In some Coupledoms, these roles are fixed. But in most Coupledoms, individuals take turns playing the parts, depending on a lot of variables including context, trauma, age, illness, loss and failure.

Owning The Narcissist Within: A surefire method to protect your Coupledom from Invasive Narcissistic Couples’ Disorder (my term), a virulent destroyer of mutual love and respect, is to own the narcissistic inclinations and attitudes within you. Most of us are replete in narcissistic habits of thinking, behaving and feeling. And a closer scrutiny of our tenaciously held belief systems in relationships will reveal some of the most toxic/self-absorbed, narcissistic ones. With an open mind and honest examination of self, matched by a willingness to hear how your partner experiences you, owning your narcissist within can save a whole marriage. Wow!

The Defensive You: What makes us all so defensive in exchanges with our partners about our “imperfections” is that we think any correction, suggestion or complaint, means we are all bad, all defective, failures at being lovable. So we bark, and balk about any single “criticism” or attack the other, feeling righteous and victimized. Oops, normal but not good and too much of it is creates long-term damage. Defensive responses, such as “I don’t do that but you do” (“turning the tables on the other” or “blame the victim”, familiar maneuvers to us all) or “I am never good enough.” Or “there is always something, I can never please you” can often be the narcissist in us speaking. Catch your defensiveness and you will find fearfulness, the threat that lurks beneath it and is based on very young notions that “I have to be perfect or I am unlovable, shameful or bad.” Change that nine-year old thinking and voila you have graduated middle school, skipped high school and now are an adult! At last.

Owning The Co-Narcissist Within: Alternatively, even as you are narcissistic at times, you may also be the one tiptoeing around on some issues or during particular stages of your relationship with your partner. Areas of discussion that are taboo are often indicative of co-narcissistic moments. A partner who won’t bring up a critical topic with their spouse ever, for fear that they will be perceived as having broken an unspoken vow, or being seen as an enemy, may often throw someone else under the bus as a consequence. Perhaps it concerns a child or parents, or the partner themselves, yet the threat of being perceived as hurtful or untrustworthy impairs judgment and impacts unfairly another, maybe you or your child. This could be around a spouse’s job loss, an illness, an addiction, or a sexual disappointment. If you notice that you are hyper-vigilant and micromanaging others, children particularly, around your spouse at certain times, you need to uncover the belief system behind these feelings, haul it out and question what you are doing, the ramifications for all, and make different choices, perhaps with help. This can be crucial to you, your marriage and your family.

Narcissistic Personality Disorder: Then there are those folks who suffer from and suffer others with their “Narcissistic Personality Disorder” which is vividly described in an article by Gudrun Zomerland, MFT, who is adept at capturing both how co-narcissists and narcissists come into being, and their impact on the Coupledom. The disorder, in its most severe form, is very hard to treat. Someone with Narcissistic Personality Disorder (NPD) often finds individual or couples therapy terribly threatening due to a mostly unconscious fear that others may see their “imperfections or flaws.” This possibility threatens to reveal their big secret, that they are in fact worthless, unlovable and shameful souls. Do they know that? Are these feelings so camouflaged by their opposite – self-love, self-importance, self-absorption and an inability to have empathy or interest in anyone who isn’t serving their needs – that even they don’t know what lies within their hearts? I don’t have the answer. Some may suspect and others may even give life to those feelings, but often that is just a fleeting moment before they fall back on their defensive, narcissistic posture.

The “N” Word: Villainizing Your Partner Or Your Ex: Writing this piece is a bit worrisome to me for fear folks may use it destructively. I have observed a trend in recent years where angry partners slam each other with the “N” word, making it more a weapon than a description of behavior or attitude. And ultimately weakening its usefulness. This piece is an attempt to elevate a conversation between two parties who share a relationship where each can own their “N” or “Co-N” piece without shame and ultimately mature together in the process. I work with couples that come into therapy convinced in their belief that the other wants to demean them or put them down, only to find out that in fact, this is not the case. This “narcissistic vulnerability” makes them view a partner’s initial attempts to describe the other’s impact on them, or some minor correction, as something personally threatening and ultimately so mangled and distorted in their personal viewfinder that instead of understanding, suspicion and distrust ensue. Particular subjects, such as parenting for women, and earning power for men, sexual appeal or ability for both, are sensitive spots and therefore are viewed as a personal attack, insult or assault. Finding out that this is not the case, that there are two people in the relationship which introduces multiple possibilities, reactions, beliefs and styles, liberates everyone to be able to trust again, grow up and become a much healthier, satisfied and happy Coupledom.

Help: This is work, wonderful work. For the therapist and for the couple who strip themselves of archaic belief systems which cripple trust and begin to embark on a real bonding based on honest self-reflection and empathy for another. Get an expert to help you do this very important work. Everyone benefits, the individual, the couple and the family.

©Jill Edelman, M.S.W., L.C.S.W. 2012

Spared For Now: Our daughter is not one of those with an Autism Spectrum diagnosis. She falls into the amorphous category of cognitive disability, neurological impairment or the stigmatizing and hateful Mild Mental Retardation, yes that word, (DSM V may use the diagnostic category Intellectual Disability in its place) because her I.Q. meets those requirements, though I prefer Dr. Michael Powers’ description that she is in fact an Artichoke. That is why years ago when her scores came in, it was clear that when she aged out of our school district at twenty-one, she would qualify for life-long adult services, as long as we lined up all our ducks before her eighteen birthday. Ironic indeed. “You never know what to wish for.” Nope.

Mon Dieu: Over the decades as we fumbled along the special needs highway toe-to-toe, heel-to-heel with families whose kids were each unique in strengths and weaknesses, I began to recognize how arbitrary these designations can be. The New York Times provided yet another article that underscores the mercurial nature of this process. A documentary on the treatment of Autism in France revealed that some mental health clinicians, specifically in the French psychoanalytic circle, treat Autism as a psychological trauma brought on by a cold and frigid mother. Mon Dieu! This notion, once sadly popular in the United States and similar in its horrific accusatory nature to the notion of the “schizophrenogenic mother” that reigned as recently as the 1970’s, apparently still has adherents in France. Rather than viewing Autism as a medical disorder that benefits from behavioral treatments and training, there are French children who have ended up as psychoanalytic patients to the point of being placed in an “asylum” for six years to undergo psychoanalysis. Frankly, as an American trained psychoanalyst, I find this fact particularly mortifying.

In other words, how a “condition” is viewed by the medical and mental health community determines the fate of the individual and history has shown how mercurial, judgmental and destructive that view can be.

Our Friends: Our daughter has many friends from her years at her special education boarding school Riverview whose diagnoses are on the Autism continuum, yet with I.Q.’s too high to qualify them for adult services. With the impending revision of the diagnostic categories that allowed these children services, fear is spiking that the current crop of children will not meet the newly revised DSM V qualifications for developmental services. Without these services, how will these children grow up to become successful adults in a social world?

Revision Sample: I have reviewed the DSM V revision sample online. Take a look. It seems pretty comprehensive and inclusive to me so please let me know if I am missing something.

Short Term Solutions Become Long Term Drains: There must be no doubt that providing the tools for successful adulthood, in childhood, is a benefit to all society. While still supported by their parents with shelter, food, clothing, transportation, medical services and love, children in public schools can be taught to socialize and communicate with their peers in their communities at far less cost to the government, the tax payer and society in general. If  those same training tools were withheld, that would render the adult versions of these youngsters more likely to become burdens to the medical and legal institutions and places enormous stress on their families. And stress of that nature, research has shown, introduces additional costs to the medical and mental health arena as well as taking a big bite out of worker productivity. Short term cost cutting solutions, where human beings are involved, evolve into long-term drains for all.

Fingers Crossed: By the way, our intellectually disabled daughter just completed reading forty pages of “My Sister’s Keeper” in two days (“I like the movie better)…the Jodi Picoult novel for high schoolers and adults and will probably finish it off pretty soon. (Ms.Picoult is popular with women’s book clubs.) Does our daughter comprehend it? You bet, enough to know that the hot guy in the movie has not appeared in the book, so far. But can she pay a bill, safely cross the street, travel on her own or make critical decisions in an emergency? No. But she sure can read, thanks to years of special education services! Fingers crossed these precious special education resources will remain intact for the severe, the so-called mild, and all those in between whose success in adulthood depends on them. Fingers Crossed.

©Jill Edelman, M.S.W., L.C.S.W. 2012

Chronic: Loss of a spouse or partner from a degenerative disorder is perhaps one of the most debilitating for the Coupledom, as subtle changes in the climate of the relationship may be felt long before a diagnosis is rendered. A kind of tension has tinged the emotional airways. Someone who formerly enjoyed socializing seems disinclined to attend parties or movies, traveling to foreign ports or sharing the T.V. remote. “Set in his/her ways” may not truly reveal the whole picture. A hint of moodiness is sniffed in the air, or a spark of anger more intense than previously seen, is easily triggered. Inflexible positions are taken on how to spend money, or when to visit the relatives. A sharp powerful mind seems a bit clouded. The changes are subtle at first and irritating. Then mobility issues or marked forgetfulness are noticed, initially attributed to over-exercising or mild senioritis. But with time and visits to the internist and finally a neurologist, a diagnosis emerges, and The Coupledom shifts with a powerful jolt. Someone is becoming a caretaker, and someone else is losing their edge. This is a slow crawl with pockets of loss all along the way. And grief.

No Shame: Many today know this kind of loss where the person is still with you but their character is changing along with their body; an ambiguous loss, not a death but a dying off of the familiar attributes of the beloved and the consequent shift in the role of the partner. Can the couple talk about these changes, these losses, locate something new that can replace what is being lost? Yes, but typically the healthy spouse doesn’t want to burden their partner with their pain, sadness or weariness. Extended families are important and friends who need to validate the grieving process with reality, not with false hope, denial or disapproval when faced with the anger, annoyance or frustration of the caregiver. The caregiver needs support and is at high risk for developing their own illnesses due to the stresses of carrying the banner of the relationship, filling two pair of shoes to maintain the shared life. For the caregiver, there should be no shame in wishing that they were free to live their former lives, no shame in leaving their partner in the hands of someone else so that they can touch base with essential pieces of their personal reality. This is necessary and if not gratified, depression and illness might ensue, complicating an already challenging time.

Grief Is A Shared Reality: A Coupledom faced with a slow and steady loss can grieve some of this together. Though memories are fading for one, the steady reflections of the other offer up opportunities to shed some tears or share some laughs together. Why not? Pretending that all is the same protects no one and stresses everyone. Loss is normal, human and provides moments where the depth of the bond can be acknowledged by the shared pain of its changes and losses for both partners. There is no ambiguity in grieving together what is lost.

Acute: The sudden onset of a terminal illness by one member of The Coupledom freezes time like nothing else. There was pre-diagnosis life and post-diagnosis life and they have little in common. Time and energy spent on treatments dominate daily life and interpersonal transactions for the couple. Other family members, children and parents, need care and protection from overwhelming fears and distractions so they can get on with their lives while the fight for health unfolds. But as the illness progresses, or the treatments take their toll, losses are already occurring. Mom and wife, father and husband, daughter or son, look different, act different and can’t quite muster their characteristic oomph or interest in the lives of their loved ones. Patients of mine, whose parents became ill while they were still in the throes of their childhood, poignantly describe these losses but often with the caveat that the adults around them never acknowledged the reality of what was being lost. Grieving was put aside as if to protect the “innocent.” Sadly. For both spouse and children, sadness and loss need language even as hope is still in the picture. However long the journey, the button of emotional expression should not be on mute, in The Coupledom or with other family. Again, the depth of the bond is revealed and nourished in the moments of shared grieving. These moments remembered when the loved one is gone can ease the pain because of what was shared with them along the way: something real, mutual and honest.

Unexpected Loss: Tragic unexpected death is the ultimate “blind-sided” experience. Rips open the heart and leaves speechless the surviving partner. The staggering impossibility. Shock and groping. What makes this experience so bafflingly cruel is the absence of preparation, no file in the emotional cabinet for this loss. Blankness and blindness, and the person who might provide the light to find the way is the one who is gone. Here is where the community of family and friends need to wrap themselves around the naked survivor who has no map for this experience. No map at all. Each day, in ways that match the needs of the widowed, a path of small steps is sketched in, a new reality slowly traced out alongside the grieving process. The personal identity that the partnership formerly provided is overthrown in a moment and something new that identifies “me” has to be born, over time, with the support and love of others. This will take time. Yesterday I was a wife, a husband, a lover. Today I am a widow, a widower, alone.

Small steps: Each day, baby steps mark the way towards a tolerable reality. Unexpected loss strips the survivor of their confidence in the predictability of life and this can be quite debilitating. Rebuilding a trust in the everyday world might take some professional help as well as the passage of time. Time is a paradox in loss. It is time whose excruciating tred moves so slowly along in the grieving process and yet it is time whose gentle hand can be so healing.

Our Coupledom Life: When we sign on for the shared life, written in invisible ink along the margins of the contract to love another is the profound truth: one of our twosome will depart first. Does that keep us from love? Hardly. Loss is life’s most consistent theme. If you need a hand to guide you when you are faced with the unfathomable, seek out family, friends or experts. Don’t totter alone. This deepest of all human emotions needs company.

©Jill Edelman, M.S.W., L.C.S.W. 2012

Texting While Sleeping: And so it was that I found myself texting while sleeping. This is probably a common occurrence in the dream states of younger folk, who would rather text than talk, and at last I understand the reasoning when a friend texted me while at the beauty salon “covering her gray” so that she could share some very private stuff in the presence of hair dryers, hairdressers and “social spies” who love a bit of gossip, even when provided by a complete stranger. Duh, no one can hear you! Got it. With our daughter, secrecy really is not a requirement but she has absorbed her peer culture and madly texts away. I responded to her texts using my uncoordinated digits making numerous errors which are further compromised by laughable substitutions (please iPhone, don’t try to read my mind or my digits) and finally reverted to the default position and called the gal, in the hope of placing a stop-gap to the compulsive texting. In the case of the missing DVD, a phone conversation alleviated nothing.

Lunatic Mom: Thus, in between texting and working, I was spotted wildly driving after a UPS truck (desperately and mistakenly) which I flagged down two blocks north of our home to inquire of the package’s whereabouts. The driver, checking his clipboard, assured me that the problem was likely our postal service. An hour later I invited our local UPS driver into my home office to view the tracking information on my computer screen who confirmed his colleague’s diagnosis: it was USPS, not UPS. Three phone conversations later with a local postal worker named Heidi and a kindly gentleman from Amazon’s help line did not resolve the mystery of the traveling DVD. Only late that evening, returning home in darkened surrounds, did I find the aforementioned package in our mailbox, probably delivered by a neighbor who wrongfully received the precious parcel. Desperate measures for so small a prize, lunatic mom.

It’s Always The Mom: What, you ask, makes this woman so neurotic? Well, many things personal and historic but one is certainly the contagious quality of our daughter’s anxiety and the pressure that I feel to reduce said anxiety to relieve both of us. The silliness of the ordeal – after all, we were not awaiting responses to college applications or emergency medical supplies – speaks to my inability to redirect our daughter or myself. This was a movie about a dolphin who sadly lost its tail, a movie she had already viewed on the big screen. And even though there is the lure of Harry Connick Jr. playing a staring role in the film, we had just seen him on Broadway in On A Clear Day, in the flesh. The next day, after delivering the item and having a delightful lunch with her, my fears that this would be a hell ride for a bit longer were allayed. However, on Friday at 3 P.M. I received a text, “I am exhausted”, and when I followed up with a call, our daughter burst into tears describing a helpless state of fatigue and other sundry problems that I couldn’t decipher over the phone. A subsequent conversation with staff went something like this: “She was fine until she spoke to you. I don’t know what happened. She seemed just fine.” So it’s me, mom, the trigger, the button pusher, the problem. Or is it me mom, the maternal permission slip that lets loose all the pent-up feelings of exhaustion and pressure built up in the child’s person? I do think it is the latter in this case. As I reminded the staff, a lovely young woman who is not yet a parent, “Moms bring out this stuff in their kids.” In other words, I didn’t create the problem lady, I just stepped into it.

Sleep Is The Answer: Blessed by the need to work for the next three hours into the evening, I did not view the following two texts assailing the staff person who was applying the stiff upper lip approach to our daughter, which tends to backfire. In the protective custody of my office chamber, I was unable to respond and by the time I exited at 7 P.M. to attend a friend’s birthday party, the last text was three hours old. I neither called nor texted that evening. I later found out that our daughter thankfully slept for twelve hours straight that night as well as the following night. Our conversations returned to normal, the feverish texting ended and our daughter took pleasure in her weekend activities which included the first session of her Pegasus’ Horses and Me Program, an unmounted winter program where students learn to groom horses, clean stables and receive education on horse health and anatomy. She loved her first class. She also regaled me with a hilarious description of her visit to a local cutting edge contemporary art museum, which she described as “BORING!” and puzzled aloud why a bunch of bottles stuffed with something would be called art.

Riding Out The Storms: Could there have been a better way to handle our daughter? I think so but I have never found out what it is. Is it me? Partly because my indulgent character is probably not an asset in these situations. Is it her? The difficulty with redirection is a characteristic of many children/adults with special needs and the added factor of exhaustion exacerbates greatly the behavior. For the last two decades I have ridden out these storms to the best of my ability. Whether our daughter resides in our home, four hours north at her boarding school, or in the next town, when she is in the throes of these obsessions she finds me, or staff finds me, and together we take that ride. Normal strategies backfire or intensify the situation. But one thing I surely have learned: I will never order anything from Amazon using USPS again. That’s what my UPS driver taught me. He said, “It just isn’t worth the few bucks you save.” You can say that again.

©Jill Edelman, M.S.W., L.C.S.W. 2012

Pitfalls Of Only One Pair of Eyes: Trust is a basis for successful communication and its opposite, distrust, its nemesis. From my observation what creates or sustains a trustful financial component of The Coupledom is transparency, the ability of each partner to know as much as their spouse regarding how money is earned and how money is spent. This transparency becomes especially significant when other obstacles confront the family nest, such as economic downturns, requests for monetary help from relatives or friends, time spent apart when one travels with an expense account and the other is in charge of paying bills, deciding outlays of funds for household maintenance, or children’s activities. Often, when a couple’s relationship hits the skids, accusations around money flare up because someone has access at their fingertips of the financial fountain and someone else is clueless. Not good.

The Subjectivity of Money Meaning: Money has meaning, but not always the same meaning to everyone. For one member of The Coupledom, money is broken down into how many literal pennies are in the bank; to the other, it is simply a state, we have it or we don’t; for a third, no amount of money spells security. For someone else money is scary, and ignorance about its details is preferred. There are folks who only feel in control when they are at the financial helm and cannot trust another to handle the checkbook, online or otherwise. For others, money is gender related: men earn it and control it, women receive their portion of it and spend it. Thematically, in western culture, money means power. Divorcing women whose homes ran along traditional western style money habits bemoan their ignorant years of marriage where hubby alone knew where the money went. Regretful that they didn’t demand “transparency,” the ladies are left to feel ripped off and robbed, though the evidence of that is often ambiguous. Why the assumption? Only one pair of eyes was focused on the statements, the investments, the W2’s, the yearly tax statements sent to the IRS. Not good! As prevention is a key focus of these posts, my aim here is to suggest that couples revisit how they run their finances and consider some modifications.

Accept Difference: A commonplace financial battle is around perception. One member of the couple sees expenditures as in line with income. Another disagrees, feeling much can be cut, much is extravagant. House cleaning is one of those areas where, for women, getting extra help to manage the chaos left by young children, laundry and dust is a means to the end of creating a greater sense of order and relief once every couple of weeks. For their husband, it means money that is needlessly spent when a good strong woman, their wife, is quite adequate to complete the task. Who is right? Who is wrong? No one. What money may offer one partner as relief, may do nothing for the other. A round of golf costs a penny but provides therapy for the body and mind. Just like housecleaning. Yet, rather than allow for difference and with two pairs of eyes look at the budget and decide the breakdown with both needs equalized, couples fight, accuse and blame. Again, not good.

No Deciders Here: College tuition is another grand slam big bang of a fight. One believes in state schools, the other wants their child to go wherever he or she wishes, private or not. Two pairs of eyes need to know the budgetary facts, what can be relinquished to afford the other, when values are at odds. Is the parent who wants the option of sending their child to a private college willing to yield up some of their personal perks or return to work part-time? No one person should be the “decider” in family finances. “And that is final” are words not worthy of expression in our times; rather, they hearken back to the age of rigid roles based on gender implied by “father knows best,” or “father is an idiot and mom knows best.” Now the mantra needs to be, “We together can figure out what will fly.” Not best, not worst, but negotiable and with two pairs of informed eyes, looking at a budget on a screen, with bank accounts and investment accounts side by side to provide a “shared reality.” All veils lifted.

Information is Power: And money information is particularly empowering. Today our financial life and worth is online. Need I bother to list for folks that everything from credit card expenses to cell phone and mortgage accounts to broker trades, iTunes costs, savings and business accounts, is up for grabs with just the input of an arrangement of 8-16 letters and a couple of numbers or punctuation, for all to see. Empowered folks are those who know the contents of the family vault, literally and figuratively. Don’t kid yourselves, no matter how great a guy or gal your spouse may be, they are not perfect, may need another brain to figure out how to run the family finances and decide priorities for all rather than base it on the mindset of one. And a heads up here: the need of one partner to control the monies is not the best sign in a Coupledom either. If you have a partner who feels burdened by bill paying and account balancing yet refuses to share the password or allow you to take over some of the payments, have a serious conversation. What’s up with that? Trust, fear, secrets, issues of personal identity, esteem or fears of being viewed as incompetent or an inadequate breadwinner? Listening skills required here, as well as heavy draughts of empathy and curiosity with a sensitive eye toward tweaking what isn’t working without condemnation or judgment.

Money Is Very Personal: And so is the shared life. To make a success of one, you need to have a transparency of the other. Good luck, see an expert if your Coupledom hits a wall here. And welcome to Coupledom Finances 2012.

©Jill Edelman, M.S.W., L.C.S.W. 2012

Unfriended: Is that the correct Facebook terminology? I believe our daughter has been unfriended by one of the two remaining typical peer friends from that earlier period. How do I know this? Not from prying but from her not commenting on a particular incident reported on my Facebook page by this peer that would have alerted and, in fact, been of concern to her. She said nothing, which was puzzling, so I mentioned the situation her friend was facing. She had no idea. I did my own search and saw that this name was no longer listed amongst her friends. Previously we had to remove the name from her “contacts” on her phone because she began texting a bit too much, which she understood, and agreed that…”taking temptation away is a good thing.” But the Facebook deletion, that could be quite confusing.

Requiring Translation: This is not the first such incident. The Facebook and phone texting world can be a challenge for a special needs young adult whose inclination to be unusually focused on someone can feel like stalking, inappropriate or embarrassing. On one occasion, a friend of our son told our daughter in no uncertain terms to stop commenting on his photos on Facebook. That angered her and hurt her feelings. I think it also embarrassed and confused her. She didn’t get it. Another “typical” peer did something similar but since she had learned from the previous young man, she weathered the second “rejection” with understanding. Facebook invites many mortifying moments for vulnerable teens and young adults. Perhaps mature adults as well. So I cannot say that a special needs young adult is alone in this mix. But there is a difference. Reading social cues or grasping implicit social protocol, cyber style or not, is very difficult for the special needs world. And now that this young man (and usually it is a male who inspires her most active communications) has dropped her, the teachable moment has arisen once again. It is not for lack of kindness or goodness on this young fellow’s part. Nope, it is simply from his experience. When he had an emotional crisis last year, our daughter texted him constantly and made what might have been embarrassingly sympathetic comments on his Facebook page. It is simply a practical and preventative measure to bypass further embarrassments. Hence, the unfriending. Alas, it is not so easy to teach the nuanced distinction between appropriate empathy and what might feel like over the top, awkwardly soppy comforting.

Social Fact Facing: Our daughter does not choose to read this blog. And though she has been invited to participate in it, she has not. However last week I asked her for some input for my latest installment and her response was “Saying Goodbye To A Friend.” That was her input. Again her focus was on a young man who was off to study abroad, a “typical” friend (most are her brother’s pals who get her and care for her, and for him best of all) whom she knew she would miss. This is what moves her. She will probably communicate frequently via Facebook while this fellow is abroad, though I imagine he will have little time to respond. Will our daughter discover that her other friend has removed her from his Facebook listing? I think so. Do I need to tell her before she figures that out? No. And maybe I am wrong, perhaps he is still there somewhere but I couldn’t find him. But when she does notice his absence on her page, we will have a talk. Probably she will have her own ideas about why she has been dropped. And from her own ideas, she can learn. That is the good news. And learning social nuances, whether in cyber space or down here on the ground, is necessary for all humans, isn’t it? Taking a page out of a social skills workbook for special needs is probably a good idea for everyone.

Painful Process? In earlier times, I felt more pained for our daughter when she hit the jagged edge of social transaction, with the subsequent confusion and hurt. Now I do see that she learns something useful from these rocky crossroads. Something, not everything, because as so-called normals, we know it is hard to walk in another’s moccasins, especially when our toes fall beneath their soles.

©Jill Edelman, M.S.W, L.C.S.W. 2012