The Couples Tool Kit
Working together as a team of three — by Jill Edelman, M.S.W., L.C.S.W., Specialist in Couples TherapyArchive for adult special needs
Two Ladies About Town: 2-20-12
A Pekingese Named Malachy: Our daughter and I had a grand time in New York City last Monday and Tuesday. The Westminster Dog Show was a “hoot” including the “best in show” Pekingese” Malachy, who we were lucky to view in the toy group Monday evening. Our daughter compared him to a “walking mop” and to me he resembled a mop on wheels or a very short Cousin It (from The Adams Family). Cute little duster.
Amazing Growth: Our daughter and I are great city walkers and talkers – being able to multi-task the chatter and the matter along Fifth Avenue and Central Park. Though I never for a moment lose sight of her or relax about crosswalks or crowded sidewalks, there is a kind of repartee that touches on the sophisticated as we stroll along. She was in great spirits and the day after the show we visited her brother in his office near Park Avenue and, at her suggestion, toured Central Park on foot. Twice a man holding a clipboard asked us if we lived in the city, obviously looking for signatures in support of one cause or another. And twice our daughter answered, “I wish I did.” She mused aloud, “When I am single I want to live in the city.” Really? Single? But you are single. I love how she absorbs the pop culture. This sounded like something extrapolated from an episode of “Sex in the City.” Single here means something other than “not married” to her. I am not sure what it might be and she couldn’t explain it; perhaps “all grown up.”
Sharing So Much: Our drive back was spent listening to Tony Bennett’s new duet album and sharing views on the voices of Josh Groban (mutual admiration for his vocals) and Lady Ga Ga, Amy Winehouse, Carrie Underwood, Andrea Bocelli: she knows them all. We share so many interests, some I inspired, others she inspired. In a safe and secure environment, we are great friends. When that environment shifts and I become “the mothering one” the ease and friendship takes a back seat. Normal, I know.
The Moments I Regret: Something of that nature had occurred upon our return to my niece’s apartment after the dog show. It was very late at night and we were both spent. Yet our daughter, who apparently got some toothpaste on her pajamas, decided to wash them in the clothes washer. I only learned of this plan after she had placed the PJ’s in the machine and started it up. She learned how to do her laundry at boarding school and often does it in our home when she visits, as well as in her apartment. I know that she takes pride in having achieved this skill. But this was a different machine and it was almost midnight. So I reacted impatiently, which upset and agitated her, when I opened up the machine where sat the clothes and some liquid soap minus the water. I was not eager to work a strange machine in a NYC apartment with many floors below that could suffer from leakage, though I did try at first to do so. But rather than push it, I gave up. We had some words but ultimately she slept in my PJ’s and I managed in a tee shirt, with the plan for her to wash the toothpaste-spattered top when she returned to her apartment.
I Believe In Apologies: Most of the time I apologize for my tone and impatience. I was so tired that night that I can’t recall if I did so. By the morning, we were fine together and had that great day walking in the park, talking Tony Bennett, visiting her brother, and lunching at the former Rumplemeyer’s on Central Park South, a tender childhood memory of sundaes and stuffed animals with my mom, which is now, sadly, a sports bar and restaurant. But I believe in apologies. And forgiveness. We all do in our little family. Our daughter often apologizes for moody moments and is forgiving though she will forgive only when she is ready. Her often-used refrain is, “I am not ready to forgive him/her yet.” But she gets there. We are a family that tends to own our mistakes without paralyzing shame or blame. That is the upside of the downside of being imperfect: knowing how to take responsibility for it.
The Advantage of Distance: I don’t like being the impatient, irritable mother who forgets to use problem solving skills or empathy. These types of encounters, where our daughter’s cognitive issues clearly play a significant role, and I react badly (I don’t even recall now what I said but it was obvious I was annoyed), make me feel guilty and disappointed in myself. I need my own red flag to signal, “Take a deep breath before you speak.” Living together full-time, until our daughter was almost seventeen, constantly set up such challenges for years and years, causing a lot of self-recrimination and puncturing big holes in my self-esteem as a person and a parent, along with ample bucketfuls of guilt. Which says that for me, the hardest part of parenting special needs was feeling that something I was failing at was causing our daughter harm, to her self-image and her self-esteem. When she went off to boarding school, and now living one town over, we are still close but with some distance, I can monitor my frustrations better and am less challenged as a parent.
Responsibility Is In The Details: Is there any difference in what I have described between a special needs parenting situation and a typical one? Well, if there is, it rests in the details and the level of responsibility. A special needs young adult is a more dependent individual. Why else the designation? Therefore the parent or guardian has more levels of responsibility. When I walk down the streets of Manhattan with our twenty-five year old son, I do not need to monitor him at the crosswalks. When he comes home and does his laundry, I am not double-checking anything. When he makes a new friend on Facebook, I don’t have to be concerned as to who this friend is. There are so many differences. Therein lies the rub. More responsibility, more concern, more likely to feel anxious, more potential “moments.” It is just that way.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Heading To The Dog Show: 2-13-12
Westminster Here We Come, Woof Woof: Today our daughter and I head to Madison Square Garden in New York City to see the 136th annual Westminster Kennel Club Dog Show, a long awaited second visit to this country’s pre-eminent canine competition. And we are psyched. Our daughter has already previewed the Monday night line up and shared with me that among several new breeds introduced this year at the show is the American English Coonhound, descendant of English Foxhounds bred in Virginia, and the Cesky Terrier, from the Czech Republic with the personality of a “shy terrier” and a resemblance to a Miniature Schnauzer. As always our daughter’s swift access to Internet information awes me. No sooner had she popped up the screen on our home laptop computer than she had the breeds and their origins at the tip of her tongue.
Making Life Richer: Our daughter has enriched our lives greatly as a result of her omnivorous curiosity. After exposure to horses at age three while watching her six-year-old brother ride, she fell in love with the giant creatures and through the years poured over books filled with photos of horse breeds. I recall the moment that I recognized the developmental leap in her spatial awareness when she first noticed just how big these animals are, refusing to get on one for the first time ever. Despite this she never lost interest in watching them and continued to visit the local riding school with me several times a week. Eventually she overcame that initial shock and fear, and asked to ride again (which, thanks to the Pegasus Therapeutic Riding Program, she does to this day). She was a middle-schooler. I remember the poster we tacked to her bedroom wall filled with illustrations of the most common horse breeds, Appaloosa, Andalusian, Quarter Horse, Morgan, Paint and so on. Dogs were another four-legged passion which brought her to libraries covering five nearby towns where she would settle herself between the stacks and flip page after page of dog photos closely studying the characteristics of individual breeds (this was prior to easy access to sites on the computer), learning the class designations: working dogs, sporting, hounds, the terrier group.
Ain’t Nothing Like The Real Thing: As she acquired greater reading skill, and computer skill, thanks to the services provided by her school district, her knowledge base expanded exponentially. Yet not satisfied with the paper or online version of animal types, she sought out the real thing, in parks and at stables where she interacted with both dog owners and members of the equestrian world, chatting them up with questions and impressing them with her knowledge. Therefore her curious mind facilitated her social development mightily. And of course, as her companion, chauffeur and escort, I learned a ton too. Having a keen visual acuity and memory for physical characteristics, a talent she shares both with her father and her brother, our daughter has the ability to distinguish members within a particular grouping or breed based on shape, coloration and more subtle factors such as ear shape, markings, snout, that I find illusive. Her attention to detail when stimulated is awesome. I do not share this talent for visual awareness and so am in constant awe and grateful enrichment for being able to view these worlds through my daughter’s far keener eye.
Far-Reaching Appetite: Our daughter’s hunger for knowledge reaches beyond canines and equines to rodents, amphibians, snakes and celebrities, impressionist artists, cooking shows and comedy series, Seinfeld, Big Bang, Family Guy, CSI, World War movies, romantic drama and medical and nutritional videos, musical theater and film. Wherever we are, if there is a flyer or pamphlet available, she picks it up and peruses it. In fact, there is very little that doesn’t hold some interest for our daughter, few areas of life in which she has no knowledge. Ah yes, team sports might qualify as one area of little appeal. But that could have changed if she were raised in a different family, or if she begins to hang out with some Giants fans now.
To facilitate these cravings for knowledge we owned many of the objects of her interest: at ten she got a dog; for almost seven years we housed a rat named Doris, and later one named Jenny who lived in the dashboard of the car for two weeks until she escaped on the pier of the Port Jefferson ferry; a white mouse; a hamster; guinea pigs who birthed more guinea pigs; fish and frogs and turtles in our own self-sustaining tiny ecosystem of a pond. We visited, and still do, museums, the theater, nature centers, horse shows and stables. She had an able body of people, a team, also known as a family, to make for a hands on learning experience, as much as possible.
A Fine Mind: What kind of mind is this that craves learning and stimulation and utilizes that learning socially, appropriately and impressively? A very fine mind and one that reminds us all that “special needs” or disabled, as a designation or description of a human being reveals nothing about the assets or abilities of that individual. Society needs such designations and they serve a useful purpose for allocations of services, support, patience and funding for research. But one must not use them to dumb us down to thinking, “This person has little to offer me or the world.” Quite the contrary. This petite person has enriched their worlds for many, especially those closest to her, and continues daily to do so.
A Multi-Dimensional Gift: I view children as a gift. They make us so much more than we would be otherwise. That loop of love at its deepest level enriches the human experience unlike any other. And this daughter is the gift that keeps on giving. It is doubtful that I would have attended a dog show or a horse show in my life were it not for this “gift.” Nor would I have appreciated the humor of endless slapstick moments, or men dressed as women, or dogs dressed as men and so much more. And now we are off to the dog show, six years since we last attended as guests of my sister. Six big years during which time our daughter moved mountains, leaped tall buildings, lived at a boarding school, graduated, aged out and returned to her home state to set up adult life one town west of her childhood home. We are back to Westminster, accompanied by friends, and so much has changed, so many fears for the future have waned. This will be a great show indeed to share with our daughter and to celebrate the outstanding young woman she has become.
Follow-Up: At my request, our daughter’s team sent me the medical documentation from her ophthalmologist visit last week. I have yet to see the glasses. When I picked our daughter up at her apartment Friday to bring her home for a birthday dinner with her brother, she did not bring her glasses. Today she stopped by to drop off her overnight bag on the way to DSO (Day Services Option.) We saw no glasses. Perhaps she has them in her purse. If so, I am interested to learn if she notices a difference and eager to see how they look on her face. Maybe they will enhance her viewing tonight. Her double vision is related to muscle fatigue so if her eyes get worn out by ogling the pooches at the show, she can pop them on for better “viewing.”
I will keep you posted.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Double Vision Wake Up Call: 2-6-12
Remain Watchful, Assume Nothing: I did get lazy, feeling too comfortable letting others care for our daughter. Reliable and wonderful persons but not perfect. Our daughter had an appointment to see her ophthalmologist who has been following her since childhood. I had scheduled a psychotherapy patient at the same time thinking staff would take her to what was to be a simple check-up. Alas a couple of days prior to the appointment, our daughter mentioned having some double vision in one eye, a condition known as diplopia which is a muscle weakness she had been diagnosed with previously. She had been prescribed glasses off and on over the years for the condition, which waxes and wanes, but had not needed them in well over five years.
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.” 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. 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 staffers. This was to be a check-up and for a staffer to escort a client makes total sense. However, decisions regarding procedures that can be delayed should be passed along by staff to guardians.
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
Leap Year: 1-30-12
Six Month Review: How symbolic that the Connecticut Department of Developmental Services (DDS) has scheduled our daughter’s six month review on February 29, 2012, Leap Year! It will be six months since the August 1, 2011 move to her apartment in Ridgefield that has become her adult home. Leap indeed. What has transpired in these six months seemed like “The Impossible Dream” a year ago, a dream that only a Don Quixote of a mother could believe would come true.
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
Who Defines Disability? The DSM V and Autism: 1-23-12
Who Defines Disability: The New York Times last week published two articles back to back regarding the controversy in the medical and special needs communities over the revamping of the Autism Spectrum diagnoses including Asperger’s Syndrome and Pervasive Developmental Disorder NOS (“not otherwise specified”) for the 2013 publication of the DSM V also known as the Diagnostic And Statistical Manuel Of Mental Disorders. This is a large volume produced by the American Psychiatric Association and is the bible that guides the medical and mental health community in establishing parameters for the diagnostic categories that determine insurance coverage, treatment protocols and special education categories. The concern is that by refining Autism diagnoses, those with the milder forms such as Asperger’s and PDD-NOS will no longer qualify for treatments that have been deemed essential for their development. The fear is that services such as speech and occupational therapy, neuropsychological assessments and social skills training covered by insurance companies or provided by public school special education departments would no longer be available to children who now qualify under the current DSM IV designations. This is scary business for many families and touches upon issues that make raising a special needs child riddled with fear and feelings of powerlessness.
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
Typical Friends And The Cyber Social World: 1-9-12
Question: There are many wonderful friendships made along the special needs pathway both for our daughter and for her family. Devoted, kindly and generous souls who emerge via a variety of interfaces, and most last. But I have a question here. Have those friendships that grew out of typical peers helping their special needs classmates last into adulthood and on? I don’t anticipate an answer; rather, more of a discussion. Our daughter had some “typical” smart and loving peers from her one year at our local high school, though none from her years in middle and elementary school, before she went on to her special education boarding school. Seven years later, only one of those four is available for actual time together. Some of this is geography. But Facebook doesn’t require proximity nor does text and cell phone contact. Nope, I believe this is a matter of “difference”. At least in our case.
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
Medication Rears Its Ugly Head: 1-2-12
The Holiday Season: We had no breakdowns this holiday. Our daughter spent Christmas weekend with us and New Year’s with her apartment-mate and staff and all went swimmingly! Well, almost all. She did have a bit of a setback that confusing Monday post Christmas when transitioning back to her CRS (Continuous Residential Support) life and a bit of a stomach bug conspired to create some tense moments. The usual gifting issues arose when an appetite for a new laptop case set off continuous text messages, exhausting an already super-tired mom, and finalizing several days later in a desperate phone call to the Vera Bradley store at a mall an hour and a half away. Transitions, as all parents know, can take the most resourceful children down, and special needs children find the shift from parental abode to school, dorm or new home particularly unraveling, even when the “home” is only twenty minutes away. It isn’t loss or homesickness per se that dogs the process. Nope, it is change, readjustment and reorientation. We all know what that is like.
Current State of Daughter’s New Life: We are now beginning the sixth month since move-in August 1 and a new calendar year. The machinery of daily living is rolling along nicely, with three volunteer jobs, loads of social and physical opportunities, and relationships with staff and apartment-mate in fine working order. One issue looms down the road: medication. Our daughter’s professional team has witnessed the impact of anxiety and attention issues on our daughter’s functioning and requested that we, her parents, review the possible benefits of medication. The relationship between anxiety and attention is the chicken and egg question that no one has yet answered. The week prior to Christmas my husband and I met with an Ability Beyond Disability psychiatrist (my husband is himself one of their treating psychiatrists and the two men are colleagues) to review our daughter’s status. For many years our daughter has been medication-free and the interplay of meds such as Ritalin, Wellbutrin, and others introduces that slippery slope that we slid down years and years ago, beginning in kindergarten and terminating in late middle school. Most medications mute down her sparkling personality, and though she becomes more focused, rob our daughter of her bouncy spirit and quick wit, intolerable losses. Some led to crashing moods. When younger and her behaviors took a more dramatic form, giant temper tantrums and refusals to go out to social events, the price was necessary to pay. Not anymore. That’s my position.
The New York Times: I had sent an email to the team reviewing our daughter’s past trials with a variety of medications as preparation for the meeting. The behaviorist and the residential coordinator met with us and the ABD psychiatrist. Wisely our daughter was not invited, as this was just a stroll down the medication lane without any plan to prescribe. It was the morning of December 21. The discussion was useful but I grew impatient with some of the dialogue because I have at the tips of my fingers complete recall of what ensued whenever our daughter was visited upon by some chemical cocktail, and though the psychiatrists know the chemicals, I know the kid. New medications were discussed and no decision, or even a decision to make a decision, ensued. The next day the New York Times, in their series on the treatment of the developmentally disabled in New York State, published an article chronicling the sometimes abusive use of medication in various facilities around the state. I am providing the link to the article not because our daughter is currently at risk for such treatment. She is not, because I won’t let that happen nor do I think anyone wants that to happen. But because it is happening to others, and the potential evil, even when “good” is intended, for medication abuse of the intellectually disabled is heartbreakingly real.
War Horse: Coincidentally, our family went to see the movie “War Horse” over the holiday, and the corollary for me of animal abuse and the potential for abuse of the intellectually disabled, or children, who cannot “voice” their distress or when they do, are not understood or seen as the authorities they are on themselves, rendered me in a painful puddle of tears and ambivalent about recommending the movie to anyone prone to such reactions. Of our family of four, I alone left the theater gutted, with reddened nose and eyes. But that is what mothers are for, isn’t it? To feel for those less powerful than we, and do something useful with that feeling.
Historical Concerns: There is nothing new here about well-intentioned educators, vocational or residential staffers suggesting that our daughter’s performance at tasks might benefit from medication. The last evaluation from Riverview in the spring of 2011 unequivocally recommended that the family review medication options. And so we are. But I am wary and wise from experience. Who knows? Life is long. Daughter has matured. And new meds are always on the horizon.
Stay Tuned To 2012 Parenting Adult Special Needs: One Day At A Time
©Jill Edelman, M.S.W., L.C.S.W. 2012
The Artichoke: 12-12-11
Update: Our daughter’s past week of adult living has been a hearty combination of successful vocational programming, physical activity and social fun. Actually, I didn’t see the gal from our brief interlude last Monday until Sunday evening, though we texted and talked. She swam with Angelfish, sang with SPHERE, cleaned and combed cats at ROAR and The Complete Cat Clinic and set up chairs for the elderly yoga class at Ridgefield Crossings. She attended two days of DSO (Day Service Options) and dined out with her dad at the Olive Garden yesterday after their Christmas shopping at the mall. The staff and her apartment-mate decorated a live Christmas tree for their living room, and though she was unable to attend her last Pegasus riding class of the Fall season because her roommate couldn’t be roused out of bed, she handled that disappointment with forgiveness and tolerance (we were notified too late to get her there on time on our own).
Balloon of A Moon: I was missing the girl, so by last night, driving back from a gathering in Manhattan, I called our daughter and then the apartment staff to ask if I could stop by for a bit. Affirmative. So I continued my journey up the Saw Mill Parkway, the night air super clear and an amazing yellow balloon of a moon floating above, actually to the east of my driver’s window. A wow of a moon bouncing along with me, like those sing along markers, keeping me company as I sailed up the ancient highway (ancient in the American sense of old), exiting on to Route 35 and entering the town of Ridgefield where I saw the most pleasing of New England Christmas sights. Main Street was lit with white lights shimmering up and down sidewalk trees and classic Victorian porches and the Ridgefield community center, a grand old mansion, was as if soaked in a vat of sparkly diamond juice, so ablaze was the building. As a Jewish girl from Long Island, the classic New England Christmas of modern times still bowls me over. Lucky girl our daughter, I thought, to live in such a beautiful town where joyful festivities are right outside her apartment door.
Tracking The Journey: I have been reading two books by parents of special needs children. The Anti-Romantic Child, A Story of Unexpected Joy by Priscilla Gilman, a glorious, personal and profound book and An Unexpected Life, A Mother and Son’s Story of Love, Determination, Autism and Art by Debra Chwast, wonderfully illustrated with paintings by her son Seth Chwast. Both tales start off with the kind of groping in the dark of discovery that “your child is different” that is almost identical to my own, where someone outside the immediate family points out that the child has issues (though the parent has already worried that thought) and the first response is to plead and pray with the powers that be, NO, this can’t be. And then the equally agonizing process of realization that the “difference” part is there and will never go away. That this child will not grow out of difference or up into anything completely “normal” ever, the signature of discovery that brands your parental skin with a searing and permanent marker. And grief for the child and the childhood that would never be. Loss, as Ms. Gilman so poignantly conveys, is at the core.
Half blinded by the piercing light of this revelation, the parents stumble along, from one specialist to another, starting the therapies, nose to the grindstone, reframing all that they knew and expected of life. But with time, hard work, and most importantly, getting to know your child freely while forsaking the “expectations” of the norm, liberation sets in and true appreciation of their very specialness and its gifts to you unfold.
Anti-Romantic Indeed: Priscilla Gilman’s title of her book cups in four words what those early days and months reveal: this is not your conventional parent-child romance. This is not the child who brings home the trophies, report cards, and bouquets for mom, who runs effortlessly through fields of tall grass, or trounces about in eyelet dresses wearing ribbons in her hair. Nope, this is a child of another kind altogether.
Dr. Powers: When our daughter was in first grade, the late Joan Parker, one of those angels who crossed our path during the “dark ages” of raising our daughter and the finest director of special services ever to work in our school system, referred us to Dr. Michael Powers for an evaluation, with the hopes that Dr. Powers would nail down just what was “different” about our daughter and maybe, I hoped, prescribe the silver bullet (still fantasizing that there would be such a thing, silly mom). Up until that point, we were dancing around diagnoses but never settling on one. Our daughter was so difficult to test, so anxiety ridden and resistant that I held little hope that this enterprise would offer anything useful. But fingers are always crossed. Just getting our daughter up to Newington, two hours or so away, without her tearing the car apart was a considerable challenge. But we succeeded and after some visits, I can’t recall how many now, Dr. Powers sat us down to tell us this: “Your daughter is an artichoke.” She was not autistic, too social. She had significant peaks and valleys so she didn’t fit with the flat trajectory of abilities of mental retardation either. She was an artichoke, with serious language disorders and math disorders, social anxiety, fine motor and gross motor issues and sensory integration issues, but capable of symbolic play, abstract thinking and social perception (he continued to observe her over the years and was the first person to assure me that she would definitely read someday, which she did and does quite well). But she was still an artichoke, and an artichoke she has remained.
Is This Romance? Yes, because I love artichokes, and unique individuals, and most of all, our daughter. And so do many other people, fortunately. As with the authors of the aforementioned books, the best part of parenting special needs is that you stretch beyond convention and perfection and welcome out of the box living and loving.
Safe Joyousness: Thank you Ms. Gilman and Ms. Chwast for telling your very personal stories. In fact, the hallmark of these stories is just how personal they are. Lucky us who walk on the wild side of parenting. No one ever thinks that we are lucky but these ladies know that we are. May that luck go with our children in their life long journey of embracing difference in safe joyousness.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Super Good Week: 12-5-11
A Complete Program: Last week ranks as the first ever where all pieces of our daughter’s independent adult life were up and running. Miraculous. For starters, she went to three volunteer jobs, and none of them had a glitch. Ridgefield Crossings, the senior residence, gave her the task of escorting seniors to their yoga class. Our daughter helped set out the equipment (not sure what that was) and participated in the activity. From what I could gather, since she texted me later, the seniors did their yoga sitting on chairs, “I like it better on the floor.” Okay.
SPHERE: That evening, Thursday, she returned to her SPHERE group after a hiatus during her “lapse” and apparently had a “ball” — even singing a solo of “Deck The Halls…” Friday she had both her ROAR job, and The Complete Cat Clinic, whose chores included combing cats and cleaning counters, “Which I did not like.”
Pegasus and Angelfish Therapeutic Swimming: Earlier in the week, she and her apartment-mate swam with Angelfish, with the director sending me a video of our daughter splashing the water with one of those foam noodles, having a great aquatic time. Saturday morning she attended the second-to-last of her Fall Pegasus riding classes where she jumped, which she describes as a sensation like being in a “rocking chair.”
Weekend activities included walking a staffer’s golden retriever Cinnamon, attending a holiday stroll through the Ridgefield community to participate in the festivities which included ice sculpture displays and culminating in a holiday party Sunday hosted by the male residents of an Ability Beyond Disability group home in town.
The Dream Week: Really, what more could a mother want? I visited with her briefly on Friday afternoon and didn’t hear a word from her until Sunday evening, when she called to follow up on an earlier conversation with the name of the actress who stole Robert Mitchum away from Polly Bergen, his alcoholic wife, in a made for television 1980’s World War II series “Winds of War” based on the Herman Wouk novel. The aforementioned Mitchum paramour was played by one Victoria Tenant. Who could figure that one out? She did.
The Interloper: I just returned from a quick visit with our daughter and found her, her apartment-mate and two staffers seated at the dining room area table. The two ladies were busy filling out a questionnaire of some sort. All were totally immersed in what they were doing, happy and barely lifted their heads to acknowledge my presence. I felt I had interrupted “family time.” And I think I did. The interloper. Though our daughter knew I was arriving to drop something off and take measurements for the Katy Perry photos we plan to hang above her bed, the staff did not know. I busied myself, than chatted for a bit, and went home, kind of feeling weird. The normal weird.
Kids All Grown Up: I think our kids are grown up now. All grown up in the sense that our home is just a temporary place for them now. A place to “come home to” but not to live in. Leaves a hole, doesn’t it?
©Jill Edelman, M.S.W., L.C.S.W. 2011
