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 children with special needs
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
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
Coffee Grinds: The Sequel 11-16-11
Spill Over Into Wednesday: I regrouped, or so I thought, from yesterday’s weariness only to find this morning that my coffee filter was gone. Guess how? Yep, when I emptied the filter onto the Fed Ex envelope that I mindlessly threw into the garbage, the filter went in too. Pretty concrete way to measure exhaustion. Our rather potent garbage mix (thanks to a 21 pound cat’s litter) is kept outside in a wooden bin and today is garbage pick-up day so in bathrobe and socks, I flew out of the house and retrieved said filter in the nick of time. Oh boy!
Katy Perry and The Medicaid Mix-Up: I am beginning to notice that a special needs adult’s life isn’t that different from a special needs child’s life. Everything is complicated. More complicated than “normal” you ask? I think so. Am I surprised? Not exactly, but living it is different then contemplating it. The planning and prevention that is going into taking our daughter to meet up with her escorts and attend the Madison Square Garden concert this evening has probably yielded 10 emails and 3 phone calls.
The Medicaid mix-up, which at this juncture they are blaming on our daughter’s special needs trust (SNT — another jolly acronym supplied this time by our attorney), is ongoing and encompasses the usual disconnect between agencies and professionals, with the client/consumer at the mercy of them all. That mix up probably generated 12 emails and two phone calls alone yesterday with our attorney losing his temper in one of those correspondences, fortunately only to me. In fact he was pretty funny using the analogy of the firefighter/arsonist lighting a fire so he/she can look heroic by putting it out. Strong condemnation but I get how frustrated he must feel, when he does the work, and well, and a less knowledgeable bureaucrat challenges it. Hopefully redemption is in store for both of us when Hartford stamps all with approval.
Off To NYC: In a couple of hours I head out with the star magnet, and fingers crossed, she bonds well both with Katy Perry and the MSG scene. Toes crossed on this one too.
2:55 P.M. Received an email from the vocational coordinator just as I am about to depart to pick up daughter for NYC. The ROAR folks cancelled her volunteer work this Friday as the person assigned to train her has left. Now let me count the delays: ROAR renovation, not personal. Ringworm, not personal. Power outage, not personal. Staff departure, not personal. ABD vocational life skills staff resigns after two weeks, not personal. ABD takes two months to find suitable replacement, not personal. Ridgefield Crossings power outage, not personal. Ridgefield Crossings senior resident out at dentist appointment, not personal. So why does it feel so personal? Frustrating and disappointing. At least for mom. Have to check in with the gal.
If all the world were run the way our daughter’s volunteer jobs have been, we would have expired as a species eons ago. And probably by our own hand.
©Jill Edelman, M.S.W., L.C.S.W. 2011
The Delights of Difference: 11-06-11
Pride To The Sky: Yesterday our son and his boyfriend joined day two of our daughter’s birthday celebration. The young men took the train from the city and we all drove to the Palace Theater in Waterbury, Connecticut to see In The Heights and catch up with their high school buddy who is in the orchestra playing bass in the Broadway show’s national tour. Prior to departing, a neighborhood acquaintance and electrician by trade stopped in to give us an estimate on work which included ordering and installing a generator to reduce the havoc of Mother Nature’s next visitation upon our home. This gentleman’s grown children went to school with our children years ago. I introduced him to our son and “his boyfriend.” I saw his eyes move between the handsome young men, taking in the meaning and adjusting his expectations. I felt proud. This is our son and his boyfriend, two of the finest young lads one can meet. This is our daughter, known to his wife who had subbed as her aide on occasion at the elementary school. These are our children and their friend and my pride in all of them reaches to the sky. Why?
Artful Hearts: I guess you had to be there. But I’ll do my best. Our son and his boyfriend visit our daughter’s apartment, love to hang out on the red couch, and in general exchange hilarious banter on a range of subjects. They are a big part of her life. Our daughter’s recent favorite topic is the love she witnesses between these two men. After the show we all went to dinner at one of those Asian fusion restaurants where sushi and sesame chicken happily coexist. While her father and I looked on, the three weaved together a tapestry of fondness that could hang on any museum wall. Our daughter, having purchased a drawing pad and some markers at a quick stop at the local Walgreens, began to draw a picture at the table. The finished work was of the two fellas’ heads, rather outsized to their small bodies, teeny hands and feet, wearing tee shirts each with the inscription “I love…” with the name of the other finishing the sentence. Our son’s boyfriend, an adept artist, responded with a drawing of our daughter next to her pooch Waggy with her froth of black waves surrounding a face punctuated by the requisite dangling pink tongue. The love was as thick as the peanut sauce smeared on the dumplings but with no artificial anything. Pure and plentiful.
Delightful Difference: We are a family of “difference.” These days I say to folks that my husband and I mixed quite a cocktail, one that made us join “clubs” in which we never thought to have a membership, walk through doorways and hallways that open only to the chosen few. But ultimately what a delight. The readjustments to the cards dealt have borne unexpected fruit. That of authenticity. Everyone is what he/she is. And each is accepted, celebrated and embraced with their intrinsic beauty, artful hearts, and unbridled empathy for others that “difference” often produces.
Growing Up Jewish: Growing up in the fifties and early sixties, raised on the tragedies of the Holocaust, imbued with the slogan “never again”, I figured that was the “difference” that marked my life. I never envisioned more down the pike. I’ve always liked being Jewish and now I can say that about my motherhood of difference. I like that too. Thanks, kids.
P.S. Please take a look at this link of an important article in today’s New York Times on state care. Check out the quote at the bottom of page 5.
©Jill Edelman, M.S.W., L.C.S.W. 2011
We Are So “P” of You: 11-5-11
A Run Down On The Cats: During our ride back from the birthday dinner/shopping celebration last evening, our daughter described her work at The Complete Cat Clinic earlier that day. She spoke of Elwin Nelson, Mocha and Coco. Elwin Nelson is white with brown patches, a male and “adorable.” Coco is a cat whom our daughter helped to socialize and was boarding at the clinic. Staff informed our daughter that her work with Coco had made all the difference in the cat’s ability to become an acceptable member of the family household. Mocha, on the other hand, is a resident kitty with mood swings. “I stay away from her.” Smart Gal.
Animal Space: During the conversation, I mentioned to her apartment-mate, who is a fellow animal lover, and seated next to her in the car, that over the years our daughter had many pets: rats, guinea pigs, a hamster, a mouse and of course the requisite variety of fish: fighting, gold and angel. Even turtles, one of whom was named in honor of a very special friend, the other christened “Speedy” and you can guess why. I recall that one was purchased in Chinatown, and both were red sliders. They lived in our frog pond for a substantial period of time until either The Great Blue Heron or the neighborhood raccoon swooped in and flushed them out for an afternoon’s or late evening’s snack. The mention of turtles triggered an unfortunate memory for her mate, an episode with her brother, who was trying to redirect a snapping turtle back to the pond, getting his finger bitten and bloodied. “And I had to clean it.” “Well,” our daughter intoned, “You have to remember to give animals their space.” Who is this girl?
The P Word: For possibly as much as a decade or so, our daughter has begged us to eschew using the “P” word, as in “proud.” ”I am so proud of you” was anathema to her which left us scrambling for an acceptable synonym but alas never found. Instead, “I am so P of you.” was a clumsy second best, uttered with sincerity and an unavoidable dash of humor. Perhaps the “P” word for her signaled “pressure” rather than pleasure. But last night’s young lady, now twenty-two and nobody’s little girl, made me so “P” of her. And more importantly she is so “P” of herself. She is impacting the life of kitties, making them and their owners happier and becoming expert now on felines as well as canines, movie stars and WWII.
Taboo No More: And something else has changed. Lately when I allow myself to ignore the taboo, after all, she is a grown woman, and say “I am so proud of you.” she glows. And often her response is: “I am proud of myself too.”
Proud To Be Me: An accomplished young woman doesn’t have to be afraid of the “P” word. Proud is no longer taboo. I think it is the experience of knowing “I can do it” accrued over many years, with hard work, tremendous support from skilled educators, and many challenges overcome, that make P not a pressure but a pleasure. “Proud to be me.” Yippee!
©Jill Edelman, M.S.W., L.C.S.W. 2011
Super Giggles: 11-04-11
No Roar, Yet Giggles: Today is our daughter’s twenty-second birthday. I called her this morning and sang “happy birthday to you” with some silliness added on. She exploded in giggles, which sent waves of joy through the phone line to me. Excited much? You bet. And today was to be her second “first day” volunteering at ROAR, but it was not to be. Cancelled. Why? Ringworm or power outage? No one knew. Despite these continuing disappointments, our daughter remains upbeat. She was off to the The Complete Cat Clinic whose power is on, to stroke, socialize and brush the kitties.
The Gentle Barn: Most of us know the personal pleasures and pain of living with animals. Some of us have witnessed the healing aspects as well. On November 1st, The New York Times covered a story that is worthy of your perusal. The Gentle Barn, in Santa Clarita, California, is a haven for abused farm animals and abused, troubled or disabled humans. Apparently Ellen DeGeneres is a strong supporter so this may not be news to most readers. However, the power of this type of story bears repeating. As with so many of the most successful philanthropic endeavors, one person’s pain gives birth to another’s healing. The healing loop: give and get back and all feel better.
Angels Out There: I am quite convinced that most of the angels in the world reside on this, our very imperfect planet. I have met many and though they may be different from their heavenly cousins, flawed and without the wings, they are here everywhere. As with the founder of The Gentle Barn, the path that lights the way for happiness in the lives of mortal angels rests in the act of giving. They are not without personal messes, at least according to my definition. An angel doesn’t mean a being without the usual panoply of divorces, addictions or annoying idiosyncrasies. None of that magical mythical mentality here. Just simply this: an angel is a person whose life force relieves the sufferings of others, brings the possibility of joy into their lives and for whom those actions alone make the sun shine, the blood flow and the heart beat satisfactorily each and every day of their mortal life.
Heaven Can Wait: There is quite enough work right here for our mortal angels. “Bless ‘em, every one.”
©Jill Edelman, M.S.W., L.C.S.W. 2011
Two Lady Grumps With A Lot To Share: 11-3-11
Senior Residence: Surprise, Surprise, Ridgefield Crossings start date has been delayed another week due to power outage. Still waiting to hear from Roar, postponed last week due to Ringworm. These vocational settings have been fraught with problems, though the trustworthy Complete Cat Clinic has remained steadfast and true so far.
Medicaid Update: Looks like the bureaucratic glitch was just as anticipated: “It (the waiver application upon which the Medicaid approval is dependent) is in Hartford in the waiver unit’s possession. They hope to process by Friday…” so says the regional director. Makes sense, it is after all, her birthday on Friday. Fingers crossed they won’t mess around with the promised “entitlement” gift of the aged out independent young adult gal.
School Was Easier: The years our daughter spent at Riverview were far less taxing from a parental perspective. She was surrounded by staff, four hours away, and we didn’t have to fight for anything beyond some occasional social facilitation when “drama in the dorm” reared her ugly head, or heightening awareness of academic oversights, and touching base with health care regarding sinus medications and other minor health related activities. Her new life has kept me busy almost daily since June, setting up and now follow through, even though she is with an excellent agency. Is it me? Or is it that Phase 1 of independent adult living takes a village and a half to get it launched. That plus two power outages since she moved in, and all kinds of vocational placement problems, have kept things lively. Too lively. And of course, this latest “entitlement” conundrum.
Who Knows? Will Medicaid be fixed by Friday? Will Roar reopen Friday, freed from the taint of Ringworm, to allow our daughter to attend her first actual volunteer day? Will Ridgefield Crossings open its doors next Thursday when our daughter is rescheduled to meet the senior female resident with cat to embark on her new career as “companion?” Who knows? Not I.
Just As An Aside: For those readers who do not reside along the east coast between Maryland and Maine, most of normal life has been cancelled or postponed in these here parts. For our daughter, her Sphere rehearsal, scheduled as usual for Thursday evening, will not be happening as a tree apparently has fallen into the room at the church where the group meets. Pegasus Therapeutic Riding program sent out a warning that they may have to cancel all classes this week due to lack of power. And most Halloween events, except for the small party at our daughter’s Ability Beyond Disability DSO on Monday, have been postponed until next week. Can you actually postpone Halloween? At least candy, as a rule, doesn’t spoil, though the food in our daughter’s CRS apartment fridge and freezer that I observed being hauled out in white garbage bags to the bin, sure did. Still can’t get a fresh piece of meat at the local supermarkets…and I am lusting for a chicken thigh.
Follow-Up On The Grumps: Our daughter called last evening to fill me in on a hysterical episode of “The Big Bang Theory” in reruns, where Sheldon has long dark hair and polishes Penny’s nails. She followed with a short synopsis of a Seinfeld that I couldn’t identify from her description and ended by apologizing for her grumpy mood on Monday. She ascribed her’s to her sinus infection and fatigue. I too apologized for my grumpy mood, tying mine to my tummy virus and frustration with the Medicaid debacle. Two lady grumps with a lot to share, mutual forgiveness, and much fun ahead.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Coming Up On 22: 11-2-11
Birthday Girl: Two days from today our daughter celebrates her twenty-second birthday, which will be marked by a variety of events including attending theater in Waterbury, Connecticut to see “In The Heights” and a trip to the Vera Bradley store at the Westfarms Mall.
Bass Player Pal: Her brother and his boyfriend are coming up from the city to attend the play whose special importance arises from the presence of our daughter’s dear, loyal and fiercely funny “typical” friend who is a bass player in the show’s national tour and this happens to be the weekend the play comes closest to our area. That plus taking her apartment-mate out for a special dinner and a jumble of gift items ranging from her first iPhone, which she is technologically equipped to use, to a DVD of “Tea With Mussolini” should cover all her Bday needs. Family and friends mark her birthday with calls, cards and gifts. Something about that girl coupled with her “special needs” draws out the good, generous spirit in so many.
The Presence of Goodness In Unlikely Places: As a mother of a child with special needs, I have been privileged to witness extensive goodness in unlikely places. Hardened souls, men and women a like, soften in the presence of a child or adult whose capacities are compromised. Perhaps the childlike quality of so many special needs adults, which is most apparent in their speech, often the first clue, or their gait, or their gaze, knocks down walls of indifference and judgement leading to empathy and compassion. And delight too. Special needs children and adults can be more entertaining than we normals. Why, because much of what you see is honest, uncensored, pulsing with vitality and truth.
Her Birth Gift To Us: As one of our daughter’s cousins-in-law observed, “She cuts right to the truth.” Special needs adults have a unique appeal. They are adults but they retain the enthusiasm and honesty of our former selves, before we became “normal”, repressed, censored and civilized. That’s why our daughter draws in the troops. She touches the child within us, draws them out, and then we can all play together. In the best of times with our daughter, I, who rarely feel anything but young in its best and worst connotations, feel ever so much younger, ever so much lighter, ever so goofy and ever so romantic. Her birth gift to me. And many others, her father, her brother, his friends, our extended families, teachers and bus drivers. They kvell with delight in the contagion of her enjoyment of so much that, when seen through her eyes, becomes hilarious, intriguing or endearing.
Through Her Eyes: To see the world through our daughter’s eyes is never to be bored, embarrassed or cynical. Happy Birthday Special Lady from Yo Momma.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Giardia and Feral Cats: 10-24-11
Smart Girl: I caught up with our daughter at last when she called me yesterday around 2:30 P.M. as I was on route with my son to help him move into his new apartment/closet on 15th Street in N.Y.C. The young lady surfaced at last to give me her view of her tour of ROAR, which sounded like a resounding success. My son and I were heading down the Henry Hudson Drive, a super sparkly river on my right, replete with joggers, bicyclists and strollers making the “Sunday In The Park” a reality, when his sister called. I was so happy to hear her recitation of the “tour” and her comfort level with her vocational staff that I felt compelled to take notes, but didn’t, so this is from memory.
ROAR: Our daughter gave me the virtual tour, which included a description of the most common ailments of shelter animals, Giardia amongst the top two. Also, how many of the animals are adopted, and that those that are not are euthanized. Pang… Super Pang. She then launched into the future plans that ROAR has to create an “exercise space” for the dogs and how she will be working with cats, which doesn’t seem to bother her at this time, despite her primary passion being canines. She remarked on one very special pit bull she met whose name eludes me for the moment. Apparently Doreen, the Roar volunteer coordinator, posed some questions, including defining what a feral cat is, and Voila, our daughter responded “A cat who lives on the street.” Brava.
Drama: The drama of the last 48 hours had dissipated and apparently all went well with the new staff/daughter interface. However the issue of communication gaps came up. The Thursday – Saturday residential paraprofessional was the one who had strategized with our daughter for Sunday’s tour, working with me to help her overcome her concerns regarding the vocational staff person and to plan how to handle the day. That information was left to be conveyed through notes to the Sunday – Wednesday paraprofessional who comes in early morning. But that wasn’t done because I believe the professional staff took over the job of communicating the plans but then was unreachable by cell Sunday morning when the Sunday paraprofessional, following instructions left for her by her colleague, called her. Oops. Got it?
Now I’m Pissed: Well, not exactly. I know these system problems. The paraprofessional world often is usurped by their professional brethren when actually they are the folks in the know. So perhaps the residential coordinator, who had stopped in later Saturday afternoon, pulled all the pieces together and felt it was her role to present them to the paraprofessional the next day, certainly better to talk then to have her read all in the notes. But it didn’t work. If our daughter had not been in better shape, the whole thing would have been a mess as Sunday’s para would have had to piece together the last four days of drama quickly but certainly not in enough time to ensure a safe passage to the ROAR tour.
Werewolf Mom: Yes, I did send that email early this a.m. to the team. Not angrily. All went well so I don’t feel angry. But I do feel worried. Had it gone badly, well, you know werewolf momma would have descended. So I am trying for prevention once again. These folks are working so hard and mostly so well that it would be very unfair to hammer them, as well as unkind and destructive. They will get the message. Systems have so many cracks in communication, multiple people, human error and a cell phone turned off or dead perhaps, or a mailbox full. Whatever. We were lucky this time.
Friday ROAR Begins: It’s all about the girl and Friday she will become an official ROAR volunteer. She is psyched and though the early morning hour (she begins at 8:30) offers up plenty of challenges for her, I am working hard to help staff get her set for take off in plenty of time so that we lower the “spirals of anxiety” for all.
Am I working too hard? Possibly, but based on a couple of decades of experience, probably not. Am I a special needs version of “Tiger Mom?” I’m not that good or that bad. Anyway, “Its all about the girl.”
©Jill Edelman, M.S.W., L.C.S.W. 2011
Sick & Pissed: 10-23-11
Sick & Pissed: My visit to the “infirmary” yesterday revealed a young lady on the red couch, still stuffed up and anxious about her ROAR training, focusing mostly on the new vocational life skills staff person who has to train with her today at 11:00 a.m. I am typing this at 10:58 with the hopes that the gals got off to a good start.
A Rotten Combination: The trajectory of the conversation had the typical downward slid which occurs when our daughter had an interaction that left her insulted and bossed. “She put pressure on me to get ready. I hate that.” Her apartment-mate, seated nearby on the same couch, (she always chooses the chaise end, our daughter plops herself in the center) sympathized, adding that she has had the same experience with the unfortunate new staff person. Things became more and more heated, tears and anger, with residential staff comforting, mate consoling, and solutions offered as to how she can manage the training the next day while suffering from the rotten combination of a cold and a staff person with whom she is super pissed off.
Adios: I left and later that night checked in to find out how the lass was doing. Better. She apologized for her behavior. Staff think her venting a positive. But I know how it can last for hours, feed on itself and not respond to efforts by others to reflect her feelings and offer strategies until it runs its course. Tantrum is another term for it, triggered by the powerlessness she was feeling confronted by conflict: “I know I need to do the training” versus “But I don’t want to do it with her.” We did find strategies that offered her comfort, so my presence was no longer needed, if needed at all. (We could postpone training but as mentioned in previous post, she has waited three months for this moment.)
ABD Rocks: At 12:30 I will call and see how the training went, if she went, and how she did with the vocational staff. ABD is on the ball. They are ready to move in if this new pairing does not work (that of the two clients and the new staff person). I was able to reach the powers that be on a Saturday afternoon, and the residential coordinator went over there last evening. Can’t ask for more than that from your service provider, nope.
Follow-Up: Our daughter did not pick up her cell phone when I called over to the apartment so I have not been able to get a first-hand report on the training. However, according to the residential person in charge, she did go off with the vocational staff without a fuss, completed the training, and though feeling super stuffy, felt good about it. Communication issues reared their ugly head but I will focus on that more tomorrow. I am eager to hear from our daughter regarding how she felt about the training, was she proud of herself for overcoming her difficulties and accomplishing the task at hand? I hope so. Fingers crossed.
©Jill Edelman, M.S.W., L.C.S.W. 2011
