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 Developmental Disorders
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
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
Uneven Terrain: 12-19-11
Ducks In A Row: Our daughter had a superb week, all ducks in a row, clear, cool weather including a day of Christmas shopping with mom at the mall, followed by an unexpected outing with both parental members to the Yale Museum of Art yesterday. Her apartment-mate was under the weather, which left our daughter with the option of staying in or hanging out with us. She chose us and delighted in the early American portrait paintings of ladies in ribboned, indoor bonnets (aka mob-caps) and was particularly intrigued by a painting of a view from the World Trade Center prior to 9/11. “I am going to tell Ms. Shannon about that when I see her at the DSO tomorrow.”
Ten Pounds: One of the goals of her new adult life was to shed the extra ten pounds packed on to her small frame the last two years at boarding school and she did it! An amazing accomplishment recommended by her physician and facilitated by her residential staff. The young lady is very proud of this achievement, twirling around in the petite section of Macy’s to reveal her svelte frame, and I am very relieved. Portion control seems to be key in addition to low sodium and unprocessed foods. Hoorah. The Ability Beyond Disability staff: when they set a goal, they mean it. Very impressed.
Not Within Reach: What still strikes hard at this special needs parent are the jolting reminders of disability with basic concepts. Our daughter informed me that her plaid wool jacket had a tear in the armhole seam and needed repair. She attributed the tear to her weight loss. Excuse me? Yes, “My jacket is too tight because I lost weight.” Without attempting to replicate our conversation, I wish to convey that we had a rather lengthy discourse on how losing weight should have made the jacket looser rather than the opposite, hence reducing the likelihood of a tear in the seam. This dialogue matched many such excursions into wardrobe confusion. Shoes that are too small are often too big. A young man who is short in stature is “shorter than me.” He is not. The jacket is ripped in the seam, but the culprit appears to be the hoodie she wore under it this Fall, rendering it tight indeed, weight loss aside.
Analog Watch: Does anyone really know what an analog watch means? I do now. “A clock or a watch that represents positions on a timepiece with dials” or “of a time piece having minute and hour hands.” Such was the holiday gift our daughter received from her cousin. The watch is cool with a big round face, purple in color with roman numerals marking the hours. Not only non-digital but also non numerical. Oops. Here is another non-computing arena for our daughter. What is the neurology of her brain, this uneven terrain that can absorb fountains of information and apply it not as an idiot savant but with meaning and useful application, yet struggles to distinguish short and tall, causal relationships of less and more, half a cup, time, money? Who can grasp historical significance in the story of Anne Frank and yet read fifty-nine dollars and ninety-nine cents as fifteen nine nine, not a typo. These lacunae of knowledge are characteristic of the category of life our daughter occupies, where deep gaps of understanding render cooking (recipe measurements), budgeting, and all matter of spatial correspondence outside of her avenues of “mastery”, so far and for so long, despite hours of IEP protocols: “…shall count up to one hundred pennies…”
Uneven Terrain: This is the uneven terrain of adult special needs. I am awed by our daughter’s literary achievements; reading and writing skills increase monthly. Vocabulary grows, conceptual awareness deepens. But the terrain that rests within her brain that eludes change, will that ever be different? Life is long. Much is possible. In the meantime, these needs and many others require that our daughter receive services to make her world safe. Fingers crossed, those services will always be available…to walk her across a street, help her make a hot meal, and figure out whether the shoe fits or not. If it fits, Voila, wear it.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Phase ll Of Parenting Adult Special Needs: One Week At A Time
Back To Business: A full week away from writing my blog has been strange indeed. Though the time was bathed in the joys of turkey grease, sweet potato skins, family fun and amazing Fall weather, I do enjoy being back at the keyboard. A daily ritual was absent and no surprise that the experience was as if a part of me fell out of my identity kit. Perhaps I have turned into a “writer” as in a person who needs to write. I describe myself as a compulsive communicator, so adding this piece to my identity rounds me out quite well.
The CRS Open House: On the Tuesday before Thanksgiving, the Ability Beyond Disability team held an open house at our daughter’s apartment, mostly for ABD staff though the Ridgefield town selectman and two members of SPHERE were invited (none of them attended). The purpose was to provide a viewing of this new residential model to other staff who may be in positions to present the model as an option to new clients. The apartment looked amazing, with staff adding those little touches that make a house a home, including a series of small canvases painted with acrylics, grouped above the red couch, one by each of the apartment-mates, several by residential staff and a jointly composed abstract. The grouping is charmingly individual, with our daughter’s colorful floral composition, her apartment-mate’s sunny rainbow, and staff popping some touching mottos on top of original designs. Readers might recall that our daughter rejected contributions from her father’s ample supply of original oils, most of them landscapes, which surprised staff and the other mother, but made complete sense to me. After all, she is young, cool and “independent.” Dad’s wonderfully executed artwork did not match up with the aforementioned attributes at all.
The Third Storm Behind Us: I guess you could say the girls and staff have now survived three stormy episodes since the move-in date of August 1. There was of course Hurricane Irene, whose powerful winds returned the young ladies to their parental homes less than three weeks after the occupants took residence of their CRS. Then the Halloween Nor’easter that knocked down thousands of power lines and provided yet another round of outages, cancellation of volunteer jobs and general havoc. But most disturbing of all, Storm # 3, the Interpersonal Storm that lasted the longest (twelve days but who is counting?) during which time the apartment-mates were “not happy” with each other, “needed space,” resisted redirection, aborted attempts to inspire empathy via a board game and stayed loyal to the mantra “I am not ready to forgive her,” all ending on a wonderful note last weekend with a pre-Thanksgiving passing of the proverbial “peace pipe” so to speak, just in time to see “The Wiz” at the local high school. Whew!
The Other Mother And I: Throughout those dozen stormy days, the other mother and I never communicated, not an email, a text or a call. Wisely, I thought. We both know our daughters, are more than familiar with their “shtick” and at least from my end, saw no point in hashing it out together. I never called her to ask what she thought. I knew what she thought. It was the same thing I thought. This is what our daughters do, did, have done.
Pure Hell Revisited: Sitting next to each other on the red couch at the CRS open house after the guests left and the girls went up to their rooms to ready themselves for dinner and Angelfish swimming, the two mothers and the team spontaneously reviewed the episode. The staff spoke glowingly of the girls’ resolve to make up, acknowledged that it was tough going for quite a while but placed the emphasis on how well the ladies worked through this challenge. The other mother and I were less inclined to glow, having lived this journey too many times. In fact, sitting closely together on the red couch, mostly we chuckled, knowing full well that these ordeals are pure hell. And no amount of staff gloss or glow could cast anything positive on the process, except that they survived; the girls that is, still friends. As all said, the honeymoon was over, but the marriage remained intact. The truce was accomplished by the non-professional Saturday staffer who offers the most accepting attitude and placed her accomplishment in the hands of the “wonderful training” she received by the ABD professional team, “You trained me.” That’s cool.
A New Schedule and A Book: Now is the time for a change in the schedule of postings on parenting adult special needs. The honeymoon is over, the marital crisis abated, three volunteer jobs are in place, medicaid coverage has been reinstated, key staffers are on board, and our daughter has approximately five months of “adult independent living” (if you use the official date of onset July 1, 2011) behind her. I began the daily posts on April 1, 2011 and now will post weekly, on Mondays, to supply updates on the next months of her first year of adult life. An added focus will be on putting together a book of these days and writings with the hope that an even wider audience can benefit from our steps, missteps, learnings, failings, emotional highs and lows, bureaucratic bumblings and staff saves. Feedback is that the postings have merit for parents with “normal” children, in addition to parents of special needs offspring. Who knows? Our daughter’s star magnet quality seems to reach audiences far and wide.
Blogging Gal: Another possibility is to turn the gal into a blogger/critic herself. Many have suggested this, as she is adept at reviewing everything from movies to Broadway shows, restaurants to ice cream flavors. Just yesterday, her staff spontaneously stated “Whenever I want to know about a movie, I ask… her (our daughter.”)
Yep, so do I.
The Journey Continues: Please stay tuned. Perhaps the star magnet can offer some insights into her “world” directly, and I would love your feedback on the weekly posts. Let me know if the format works or not. And of course, thank you so much for checking in daily. For those who also read The Coupledom posts, I will be publishing more of those than I have in recent months, as my new schedule allows.
Fingers Crossed: My original goal remains firm: to paint a picture in prose for parents of adult special needs to view and use as a template of sorts to aid in reaching a satisfactory vision of adulthood for their child. As I have written previously, each state has its own confusing process, each adult child their own set of challenges and abilities, each parental body, their unique gifts and opportunities. Some folks do not need government funding. Some folks have children who do not qualify, in our existing state and national system of entitlements, for government funding, yet clearly are ill-equipped to live on their own. Whatever the composition of your child’s patchwork quilt of adult special needs living, if I can help or if this blog has offered something, well, that is very satisfying indeed. Fingers crossed our special children will all get to that place of safety in adulthood. That is the wish, that is the work.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Sunny With No Chance Of Angst; Medication Dilemmas: 11-20-11
Sunny With No Chance of Angst: We hope. The young ladies seem to have passed their first domestic crisis and spent Saturday attending a matinée of The Wiz at our local High School. Last heard from, our daughter was coming back to their apartment for a chicken dinner.
Medications in The Special Needs World: Given the propensity for negativity during “menses” we will revisit options including medication to circumvent a recurrence. We will also address the Seasonal Affective Disorder (one cousin recommended vitamin D) conundrum and anxiety. Our daughter’s history with medications for moods, anger, anxiety, and attention challenges is typical of the special needs community. Many of the students at her boarding school, Riverview, were on a pill potpourri ranging from seizure drugs to anxiety, depression and attention medications. Other health issues including diabetes and childhood arthritis were heard of through the grapevine. The health care center was the busiest place on the campus.
Medication History: As early as first grade, Attention Deficit Disorder medications were utilized periodically but they muted down our daughter’s already delayed speech development and her frolicsome personality and she would crash so badly that they were discontinued. In middle school her anxiety was treated with Wellbutrin and then Depacote was called in to moderate the frequent aggressive and defiant outbursts that were undoing us all. Those medications also inhibited her personality and eventually were disbanded but they did facilitate her learning tremendously. She entered high school sans medications but ended her challenging freshman on birth control pills to treat premenstrual and menstrual mood strife. (Her menses began at age 11 1/2, how ironic that the only area of development on the early end of normal was one of the most challenging for a young girl to handle.) They worked beautifully for years but when she gained weight we decided to give her a break when she graduated high school. Since then she has been medication free.
The Challenge: In addition, we did many trials of natural remedies and I worked for a long time with a naturopath who lived in a far away place and was a disembodied voice coaxing us along. To expedite this long-range treatment I was asked to provide a video of our daughter’s temper tantrums, which I later showed our daughter. She was pretty mortified and apologized. We did the full series of Auditory Sensitivity Training and of course the hallmark of sensory integration treatment in those years, brushing. Our daughter received occupational therapy, physical and speech therapy, naturally, throughout elementary school and continued speech and O.T. in middle school.
A Costly Effort: All parents of special needs of any kind, whether their child be cognitively or emotionally challenged, put hours and dollars into consulting, dosing and ruminating about what works, what makes worse, what burns out, what side effects, seen and unseen, might bring down the whole house of cards.
Talk About Complicated: This is one of the more complicated issues facing folks today in all areas of life. In my field, patients are constantly debating the usefulness of anti-anxiety and anti-depression medications along side fears of life long dependency, often labeling themselves as “weak” for choosing a medication manner for dealing with difficulties. Side effects like dry mouth, weight gain and loss of libido further complicate the process. For special needs parents, the medication issue casts prickly pangs of guilt as we the parents are often the deciders, which presents its own emotional burden. Seeing our children suffer uncomfortable side effects, lose their particular swagger and spirit, or feel somehow punished for behaviors they cannot control is agonizing and terribly sad.
The Proof Should Be In The Pudding, Really? Most psychiatrists today, also known as psychopharmacologists, mix cocktails of medications, customized for the particular medley of symptoms the patient exhibits. This is an art as my husband has educated me to understand over the decades, and requires careful monitoring of side effects, meticulous coordination with medical conditions, and most important, specific feedback well-listened to from the patient. This is no walk in the park for anyone and I have serious trepidation as we now revisit that can of worms with our daughter. Riverview teachers, staff at Ability Beyond Disability: everyone would love to see her on anti-anxiety medications, or medications that enhance focus and attention. Easier said then done. We have been there before and it can be a hellish ride. The answers rest with the young lady and we will approach putting any kind of pudding together very carefully, consulting with experts and for me, relying on my gut. I know her second best. She knows herself best.
The Proof Should Reside In The Pudding but the process of finding just the right ingredients for that pudding can rain havoc and misery upon our gal. The whole process has to have those bright plastic caution ribbons wrapped around it. This is no simple pudding.
©Jill Edelman, M.S.W., L.C.S.W. 2011
A Hairbrush, Forgiveness and Natalie Wood: 11-19-11
Happy Birthday To Grandpa: If our daughter’s maternal grandfather were alive today, he would be 101 years old. Wow. Our children never met either of my parents but their presence is felt by my children in my presence as their parent. Happy Birthday to you Dad.
A Wake Up Call With Horses: My iPhone showed a call made from our daughter’s apartment at 8:34 this morning, which I missed. Oops, I thought. Trouble still in the air, I felt a strong desire to ignore the call. But how could I? As I suspected, the apartment-mate did not want to accompany daughter and staff to Pegasus and watch our daughter ride. O.K. I jumped into jeans and other things and dashed to the apartment to take our gal to meet up with Sneakers, and Pegasus crew. Once at the apartment, instead of being greeted by grumps, my daughter and staff came out of the building smiling ear to ear. Apparently the girls had made up this morning. How? Staff explained that she sat our daughter down, reviewed the importance of friendship, the meaning of Thanksgiving (hey if the Indians and the Pilgrims can do this!) and Voila, the girls refriended. All forgiven but I still had to drive the lass to the horse.
Hairbrush: The day is beautiful and the riders jumped and posted for forty-five minutes. When we returned to the car, our daughter removed her helmet and began to brush her tresses. Stop! That brush again, weighed down by a collection of hair. Yes, I did. I asked if she had her other small brush in her purse, using it to pull that mat of hair out of that brush. I told her that I could throw the hair out the window (I didn’t) because birds use human hair in constructing their nests. “Oh good, they have a hairy nest.” Well, yes. We laughed, but I have to say the staff dropped the ball here. I guess they have other things to do, like meet as a security council and decide whether to intervene on warring nations. Priorities, Mom!
Natalie Wood: Pop culture and news being major attractions for our equestrian, naturally the re-opening of the case of Natalie Wood, a current hot topic, dominated the conversation on the ride back to her CRS. Natalie Wood, known to our daughter mostly as Maria in the film version of West Side Story. (You mean she wasn’t the one singing? Sadly no.) Now let’s see. Was Christopher Walken having an affair with Natalie and did hubby Robert Wagner find out, fight with his wife and then… (drum roll), either push her into the dark seas or not look to find his gorgeous wife? And, my daughter wondered, did they have children? I think so. And why did this come up now? All great questions. Our daughter concluded: “I don’t think they will ever find out what happened. Like with Jon Benet Ramsey, they never did find out who killed her.”
Pop Culture Commentator: Shouldn’t this girl have a gossip column? Or at least be a movie critic or pop culture commentator on cable? Love to get her career launched. The animal specialty has had so many blips, makes one wonder if another direction would be more reliable. When can I get this girl to write her blog, her book? I have invited her to contribute to my blog. She smiles but nothing happens. Oh well.
Setting Positive Patterns For Future Skirmishes: This round of interpersonal difficulties at the CRS with spill over to SPHERE, took up ten tedious days of my life (It’s not about you Mom) and the lives of the girls and their staff. My hope is that now that they have a paradigm for how to resolve conflict, they will get to the resolution sooner, with the likelihood that since their (“girl thing”) cycles are in sync, we can ward this conflagration off by a variety of measures not worthy of discussion at this time.
Fingers Crossed!
©Jill Edelman, M.S.W., L.C.S.W. 2011
Not Checking In: 11-15-11
My Plans: It is 10:30 a.m. and our daughter is at day two of DSO. Last word from her came yesterday afternoon when a 3:24 P.M. text buzzed my way. “My day went well,” followed by a phone chat informing me that she is missing her watch and one doggy patterned sock. Please deliver. So far no watch has surfaced but have located the doggy sock. Deep breath, don’t want to check in. Just want to return to my life; seeing patients, cleaning up laundry room after paint job, writing, and searching for inspiring Thanksgiving dishes. Not easy, that last one.
Fingers Crossed: Maybe I will get away with this plan. The day is still young and most likely I will hear from ABD staff as well as the DSS case manager with a follow-up regarding the Medicaid coverage delay. Last night my book club/former baby group came over for our monthly schmooze and after clear out and clean up I went off to bed pretty worn. A half hour ago, the doorbell rang whereupon I had to sign for a FedEx envelope addressed to my husband, then finished dressing and proceeded to clean up the few dishes from the morning meal. As I was tossing out the coffee dregs in the garbage, I found the Fed Ex envelope there, unopened and now smeared in Starbucks’ Sumatra grinds. I construe from this that I am in need of down time. I am going to pretend that our daughter lives very far away and is fine. Wish me good luck.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Shaking Things Up: 11-12-11
Friday’s Visit: Yesterday afternoon I stopped by to drop off a check for our daughter’s November recreational costs. Though entitlements fund rent and staffing, food, household goods and Medicaid, (if they finally reinstate her) nothing is left over for costs such as clothes, furnishings, and outings of any kind including movies, the recreation center, Sphere and Pegasus. Each month, each mom forks over $140 for the girls’ other needs (which is in addition to paying membership fees or class costs for Pegasus or Sphere or Ridgefield Recreation Center.) When I arrived our daughter was upstairs on her laptop, probably watching The Pacific but came down to chat and open up a birthday card from a Riverview classmate. I was so happy to hear that her first morning at ROAR was a success. They trained her to clean out a cat cage. And then she went off to The Complete Cat Clinic where she also had a good experience. Later, when her apartment-mate returned from her volunteer job (their schedules are flipped so that one staff member can serve both girls, which is how their fundings are collapsed to provide optimal coverage within a tight budget) I actually met the new vocational life skills person who seemed on the ball and substantiated my perceptions of what occurred the day before at the Senior Residence.
Shaking Things Up: Knowing that our daughter has begun her pre-winter seasonal slump (which I believe correlates with a seasonal affective disorder as I have observed this downward trajectory since her elementary school days and have looked into allergies, homeopathic remedies, and much else) I offered some suggestions to her residential staff. Research has shown that the more uninterrupted hours you sit before any screen, television, video or computer, the more mood is negatively impacted. Besides the obvious deleterious effects that a prolonged sedentary state has on our bodies, the endless hours of staring at the computer screen is a ticket to a grumpy kid or adult. In addition, exercise and oxygen (as in getting outdoors) , social contact and variety, stimulate endorphins and counteract depressive tendencies. So ladies, let’s shake things up here.
Too Much Screen Time: The commitment to physical exercise, swimming and the gym, has been implemented by the ABD staff but illness, power outages, shorter days and schedule issues have interrupted what was in the first months of CRS (Continuous Residential Support), a fairly active lifestyle for the apartment-mates. While our daughter’s mate enjoys and is able to play board games and cards with staff in the living room, which I observe when I visit, I often find our daughter up in her room at her desk on Facebook or watching a movie on the computer. Though her choice of movies is pretty high level, stimulates her thinking and expands her knowledge base and her interactions on Facebook are age appropriate social exchanges, the sedentary, monotonous process of screen involvement needs to be shortened and interspersed with “activity.” I think this has been a significant contribution to her recent emotional decline.
Staff Agrees: When I left the girls yesterday, after conversing with staff about this issue, they were inspired to go off to the Recreation Center to swim and apparently stayed in the pool for a full hour. Super. Staff gets it completely. But I will follow-up with an email to the higher-ups regarding monitoring our daughter’s time on the computer, with plans to create more variety and movement, indoors and out, so she doesn’t suffer from computer hangover.
Follow-Up To Vocational Flop: Don’t get me wrong. I am not impossible to please. Grateful that ROAR gets our daughter, gave her a job she could do and according to the ABD vocational staff member, seems to have a handle on how to work with her, I am not on a roll to castigate or reprimand for Thursday’s flop. But I have asked for a meeting with ABD vocational and residential staff coordinators, which was supported by a staff member who agrees that clarifying our daughter’s strengths and challenges with sensible parameters would be good to do, again. I understand that we are in the early stages of “adult independent living.” Much to learn for all of us.
Distance Is Good Too: I have to say that when our daughter lived 200 plus miles away ten months a year, for five years, subtracting vacations home, distance was not a bad thing for an intense mom whose boundaries can be a bit porous. I am sure for staff working with our daughter, that maternal distance has its virtues. For daughter, definitely. Those five years at boarding school were all we could have wished for her. She developed greater confidence and skill in every pore of her being. And though mom and dad are only eight miles away now, thankfully she is still growing, despite the maternal magnet to the east. Once the seasonal affective adjustment works its way through her system and my reactivity to her/it, we should be back on a more even keel.
Fingers Crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Is This A Joke? 11-11-11
Gin Rummy: Our daughter’s first day of volunteer work at Ridgefield Crossings was a bust. The senior lady with the cat was out at a dentist appointment when our daughter and her staff escort arrived. So instead of being a “companion” she was asked to play cards with other residents. Gin Rummy. Did anyone read her file, the scores of reports from her school, the vocational data meticulously documented by her teachers and placed in neat folders which I copied and passed along to Ability Beyond Disability and then reminded them to share and share and share? Gin Rummy. What transpired?
Set-Up For Failure: When our daughter checked in with me early afternoon yesterday to tell me she borrowed the series “The Pacific” from the Ridgefield Library and two holocaust movies, including Sophie’s Choice (“It was hard to follow the story”) I inquired into how her new job at Ridgefield Crossings went. She told me the tale of the absentee senior. I shifted quickly to cover my disappointment and frustration, asking if she were excited about ROAR the next day. Big pause. Big pause that signals trouble. Uh oh. “Is there a problem?” Her answer “I am having trouble with focusing.” O.K. “That’s O.K. That is a part of your disability. You are working on that.” Then she mentions the card game, “I was having trouble with the card game.” Card game? I figured that when she came back to her apartment, they played cards. Funny, our daughter doesn’t really know how to play cards, maybe Gold Fish. Games, numbers, money, are areas of significant deficit for her, in fact her most profound deficit. I could hear that she was discouraged. Shortly after we spoke, when I called the vocational coordinator, did clarity set in. Our daughter had been asked to play gin rummy at the senior residence, with her staff attempting to teach her the game on the spot and of course she wasn’t focused. That is like teaching me to speak Chinese over hot and sour soup at the local take-out. Naturally, she felt like she failed. Great. And she was taking that feeling to her next new volunteer job today, the long awaited animal shelter ROAR, where one assumes those residents, the cats and dogs, will not be out at dentist appointments. Jeezus Beezus!
Prevention: That was the word I uttered over and over with both the vocational coordinator and later the residential coordinator. Prevention. How about Preparation and Prevention? PP. These volunteer settings have to know who our daughter is in advance so they don’t set her up for failure. And the ABD staff on site should provide the essential data to enlighten them. This just isn’t fair. The only job so far that has worked out is the one I arranged two years ago at The Complete Cat Clinic. Is this the weak link in the agency chain that I referred to earlier in this series, agency incompetence, unfortunate coincidence? Or is this a joke? If it is, why aren’t I laughing? Poor kid. This just isn’t fair.
The Curse of 11-11-11? Frankly I am not going to cross my fingers on today’s ROAR event. I’ve lost my optimism and am not inviting any more disappointment for her or for me for the moment. Can it be the curse of 11-11-11 that is sucking the optimism out of my veins? The honeymoon is over and adult independent living has hit some mighty big pot holes.
©Jill Edelman, M.S.W., L.C.S.W. 2011
