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
Closing In On A Year & Building Trust: 3-12-12
March 30, 2011: In a little more than two weeks it will be a year since the first post on Parenting Adult Special Needs: One Day At A Time. Last week our daughter’s entire team of staff members from ABD (Ability Beyond Disability) and her DDS (Connecticut Department of Developmental Services) case manager sat down at a conference table with our daughter and her parents to review the last seven months of residential, Day Service Options and vocational placement. (The meeting was originally planned for the prior week but a brief snowstorm caused a cancellation.) The meeting began with our daughter presenting her views on the last months, including likes and dislikes. She was unequivocally positive about her apartment-mate and staff, their many outings, which included going to the Museum of Natural History, the Bronx Zoo and an upcoming overnight trip to Mystic, Connecticut. Regarding her vocational life, she was less thrilled with the cleaning chores that accompany her volunteer work at ROAR and The Complete Cat Clinic. Following our daughter’s presentation, staff and parents engaged in a review of vocational options, residential strategies, and day services activities, exploring with our daughter her preferences for future programming. A thick packet of write-ups from each of the coordinators of the various groups was handed to my husband and to me. Later I read through the packet, which revealed that staff had a good understanding of our daughter’s workings.
Coming Up: Residential and vocational staff have come to know our daughter well. Based on their knowledge of her strengths, staff is looking at job settings that tap into her substantial social skills, as well as her love of animals. Since that meeting a possibility has been uncovered at an animal daycare that might afford her more hands on time with the animals and more social interaction with customers than is available at her current sites. She is also invited to assist in leading a tour of potential client families visiting the ABD headquarters next month. In addition, she and her apartment-mate will greet guests at the ABD Gala on April 28th, and will be staying for the evening. Our daughter is familiar with formal fundraising galas from her years at Riverview School, which hosts hundreds of people under a gorgeous tent on the campus. She is so savvy that she asked if the ABD Gala was having a silent auction. (They are.) Nothing passes this girl’s notice.
Book Club: What is also clear is what is hard for our daughter. Especially at Day Service Options, which is the social group she attends two days a week. During the winter members often bowled, played board games and cards, all activities that are very hard for our daughter. My husband and I offered ideas such as having a group that views films together, followed by an informal discussion, something our daughter is skilled at, critiquing theater and film, talking about characters and plot. When asked by her father what sort of programming she would like to do with her peers, she said “A book club.” What a wonderful idea. She reads well and particularly enjoys biographies. There is a series of fourth and fifth grade level readers that include the life stories of historical figures ranging from George Washington and Abraham Lincoln to Helen Keller and Rosa Parks. Our daughter has read many of them and can be a member in a lively discussion which could incorporate the very world around them. Living in a colonial area where a revolutionary encampment took place (Putnam Park), field trips could be taken by the DSO group based on their readings. Helen Keller lived for some time in the town of Easton, which is close by. And Mark Twain, aka Samuel Clemens, built a house and resided in our daughter’s hometown of Redding two years before his demise and founded the town library, The Mark Twain Library.
Future Education: Our daughter is clear that she would like to continue her formal education in some format and staff have agreed to look for or create learning possibilities. Their understanding of her drive to learn and their wish to help her accomplish this is a hopeful sign. Not only is our daughter maturing, but this agency as well is reaching out and expanding to meet the needs of its new “age-outs” in impressive ways.
Building Trust: Starting last Spring, our family has been dependent on ABD to create a world of safety and stimulation for our daughter. We are almost a year into signing over responsibility for so much of our daughter’s future to them. This has been hard for me as her mother. Trust takes time to build and though our daughter felt comfortable almost immediately, with transient moments of dissatisfaction, for her mother this was a slower process. This past week I have reviewed my own journey and can say that trust, though a living thing and open to change, has been established. The ABD staff understands how difficult it is for families to “let go” when for decades they have been the lynch pin that holds their special needs child’s life together. There is no question that they have earned our trust through their professional and very personal care and dedication to our daughter. And though we have given others responsibility for the care and safety of our daughter before, both at sleep away camp and boarding school, never was it so inclusive and “legalized” and never was she so close to home that the ambiguities of our roles were a source of confusion. Distance adds a kind of clarity that proximity does not offer.
The End Of The Era Of Transition: My next post, on Monday, March Twenty Sixth, will be the last for this series of “Parenting Special Needs: One Day At A Time.” In the meantime, I hope that if anyone has thoughts they would like to share, please do so on the blog. All comments are welcomed. The transition from parenting a special needs child to an adult with special needs will continue but the first leg of the trip is certainly over. Thank you for accompanying us on it. And please check in on my final post in two weeks.
©Jill Edelman, M.S.W., L.C.S.W. 2012
Social Graces and Seven Months: 2-27-12
Demo Day: Saturday our family attended “Demo Day” at the Pegasus Equestrian Center in Brewster, New York, where our daughter, along with other students, demonstrated her equine knowledge and skill acquired in their “Horse & Me” winter “unmounted” program. At the stable, each student in her class stood by a horse while they and their families engaged in a game of guessing horse girth, height and age. Afterwards, families followed the students and volunteers down the hill to the indoor arena where the students led their horses around orange cones, offered them toys and received ribbons for their achievements. Our daughter received a satiny pink ribbon and beamed with pride and pleasure in being a part of that horsey world. In another week she will return to the “mounted” program and ride through the Spring session.
Social Skills Training: Later that evening our family celebrated a birthday with sixty friends at a private room in a neighborhood restaurant. Our daughter and her apartment-mate attended. One of our daughter’s older cousins came with her new beau. According to this cousin, our daughter went over to the gentleman, extended her hand, introduced herself and welcomed him to the party. Five years of boarding school training and an innate social acuity combine to make our daughter impressively skilled at making newcomers feel welcomed. Riverview, her Cape Cod boarding school, placed a great deal of importance on their students offering a warm handshake and welcome to all visitors, many of whom, potential candidates for admission, came for an overnight stay in the dorms as a preparatory method of determining if the student, their family and the school were a good match.
Trained Educators Make The Difference: A critical piece of the special needs education is offering a template for social interaction. Our daughter excelled in this area of her education and has maintained these skills especially as her innate curiosity and interest in others are fostered by this acquired confidence in her ability to engage them appropriately in conversation. Prior to this 24/7 training at her school, our daughter would experience a great deal of anxiety anticipating such a social evening and in the past would have refused to attend. Repeated practice and training in a residential setting over five years laid a foundation of comfort for a lifetime. It is impressive what trained educators can do, if allowed, that makes the future of a special needs individual shift from gloomy to glorious. Riverview School is a model for this type of educational intervention. And we are grateful to them every day of our lives.
Seven Months Down and A Six Month Review: On Friday we mark seven months of adult residential life for our daughter and her apartment-mate. Wednesday, Leap Year Day, I meet with her State of Connecticut DDS (Department of Developmental Services) case manager and her Ability Beyond Disability team to review the first six months. My focus is on the vocational piece. I am able to assess from afar how the residential and social components of her program are progressing but have little information regarding our daughter’s vocational development.
Sharing Lives: Almost all sixty of the attendees at the party celebration this past weekend have known our children their entire lives. Eight of the women are parent members of our daughter’s baby group/book club that has thrived and survived intact these twenty-two years. Two of the women are grandmothers; many have older children who have wedded in recent years. And all of us have twenty-two year olds born within a six month period who now are on the threshold of adulthood, most recent college graduates or soon to be. Only our daughter is more or less “established” in her adult life. She cannot wander through her early twenties in search of her true self, not quite in the same way. Her special needs life requires more definition and supervision; her entitlements impose order and rules; her deficits depend on organization and management. Uncertainty as a daily diet is unacceptable here. The irony of all that cannot be lost on anyone. Certainly not on me.
Often there is an upside to life’s hardships and this is one of them – our daughter is safe and happy in this early stage of her adulthood, and that brings to her family great peace of mind.
©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
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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.
©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
