An Off Day: 11-09-11

A Full Moon?  Was it the full moon last night? Sure looked and felt that way to me. While on route to my oil change our daughter text me “I’m having an off day.” When I called she greeted me sobbing hysterically. I could barely make out what she was saying but recognized enough words to determine that an incident occurred with a DSO group leader. Since she was in transit, and her residential staff driving, we postponed our conversation until we all had reached our destination, which for me was the bleak waiting room of the Toyota service department. Fitting.

An Asteroid, An iPhone Or A Hangover: There was nothing new here. Not really. Her group went bowling but our gal was otherwise engaged with her new phone rather than “the task at hand,” busily texting and presumably ignoring repeated warnings to desist and focus on the game. Words ensued, and when the residential staff arrived, the disconcerted, as in “pissed” I assume, group leader talked “behind my back” describing our daughter as rude and fresh. Oh boy. “Mom, can I see you.” Frankly I have never heard her so enraged or outraged in all our years of “moments” such as these. Could it be the full moon, or the asteroid hurling toward our planet that evening, too much birthday hangover or embarrassment and shame. “I couldn’t stop Mom, and she called it a toy. It is not a toy. It’s a phone.”

The Question? Three hours later, during which time I made a couple of calls, and listened to our daughter vent while driving her to Goodwill, at her request, (her coping resource has always been shopping,) to donate her old winter coat and some PJ’s, waited while she poked through stuff, choosing three items, spotting with her keen eye a slightly worn Vera Bradley purse which she paid for with birthday funds, she agreed to handle this dispute like a grown up. The question I asked myself, moments after I agreed to come by, was what should my role be here? Do I end up gratifying a “naughty girl?” Do I exacerbate the hysteria by my presence. Do I undermined staff? I discussed this with the residential head in one of the phone calls while sitting in the Toyota waiting room, with the coffee canisters and creamers on a table close by tempting me to drown my frustrations in bad caffeine. She had no answers either just “Well, you’re the parent so whatever you think is best.” Huh?

Answer Anyone? I still don’t have the answer even as I write this at 5 a.m. this morning, up since 3:30 doing downward dog stretches on the yoga mat while the real item sleeps soundly close by on her leopard spotted bed. No answer, just another day. Another asteroid.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Oil Change: 11-08-11

Coming Attractions: Today I am off to get an oil change, 20,000 miles plus on my new Toyota Venza, purchased a year ago on our daughter’s 21 birthday, November 4, and it seems appropriate to my state of mind. I am a bit burned out by birthday celebrations, storms and sickness and look forward to a clean up. The week’s weather bodes well for the likelihood of our daughter commencing with the long-awaited volunteer jobs at Ridgefield Crossings Thursday and ROAR Friday.

Quilt Completed? Once those job settings are in place, a weekly rhythm of two days DSO (Day Service Options) on Monday and Tuesday, two vocational days with three volunteer jobs on Thursday and Friday (ROAR, Ridgefield Crossings and The Complete Cat Clinic), Wednesday’s residential catch up composed of an in-house team meeting, behaviorist included, laundry, errands and bank fulfill the requirements of a five-day structured program. SPHERE Thursday evenings, Ridgefield Park and Recreation work out at the fitness center or pool in the afternoons, perhaps Yoga and/or Angelfish Therapeutic Aquatics as evening programming, Saturday morning Pegasus, and weekends replete in family events, friends, movies, museums, fairs, town activities and holy tamole, our daughter’s adult independent living quilt is complete. Whew!

We even purchased the needed new cell phone and winter coat yesterday, both long overdue. Ready to roll?

Fingers Crossed!

And On That Note: Happy Birthday To Blogger Guy’s Amazing Bride, the woman who stands by the man who stands by the blogging me.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Humor, The Antidote: 11-07-11

The Two O’clock Hour: Our daughter went to sleep at two in the morning after Friday night’s birthday. Though evening staff has a role to ensure that the girls shut off cell phones and laptops by 10 P.M. to enable them to wind down for a decent night’s sleep, somehow our daughter managed to keep connections alive well into the wee hours of the morning as evidenced by her brother receiving her texts well past midnight. Where was staff?

Variables: Sure, there were variables, birthday excitement, 9 P.M. ice cream, and anticipation of the next day’s continuing celebration. But there are always variables and transition from wakefulness to sleep, and sleep to wakefulness has plagued life with our daughter since toddlerhood.

The Hated Vicious Cycle: Naturally, though much of the Saturday celebration was successful, parts of it were blighted by our daughter’s hyper fatigue (not an oxymoron: exhausted and endless complaining has an energy that doesn’t stop, like our house alarm battery that kept beeping even as it was dying, all night long during the latest storm.) She had to rise early to attend Pegasus riding class and by the time she joined us for the second half of her birthday festivities, she had that grumpy, frankly annoying thing going on that has spoiled many an outing, many an hour of family life, her life, and her performance for two decades. I found myself, after the first hour or so of hearing about how the staff made her get up that morning and blah, blah, blah, ready to fold up the mother tent and hide in a cave.

Issues Don’t Change: Yes, the ABD (Ability Beyond Disability) staff has been informed and chats will take place between daughter and staff (they have a residential meeting once a week with the staff behaviorist), cells and laptops will be taken away at night if necessary to avoid another recurrence. The residential director is trained to do this without casting a punitive spin. Better she than me. For me, boy does it bite. When you try to connect the dots, make her responsible for her time, and yet be empathic with how awful it is to be awakened “early” and exhausted, she says “It isn’t my fault.” and though you struggle to explain that this isn’t blame, just an attempt to show her how to do it differently next time and check her clock (“I forget to look.”) or realize staff needed to rouse her in time for horse back riding, all aggravates her further. Yet, if you provide no feedback, hoping that the issue will dissolve on its own, like a bad smell, she engages again and again, unable to shake off her discomforting feeling that somehow she is to “blame.” Try distinguishing blame from owning, victim from being a player in her own destiny, try it. I have for twenty years and it isn’t easy. Best left to others I suppose.

The Antidote Is Humor: Last evening I told my husband that I was and am amazed that I didn’t develop a serious cancer or an auto immune disease over the many years of struggles such as these, when hours of paralysis and/or chaos descended upon our family, each day, with me typically alone at the helm, trying to preserve one precious child while the other, equally precious though not necessarily in that moment, unraveled before our eyes, taking down hours of happiness, peace or just mediocrity and replacing them with a sense of failure, incompetence and guilt. There is no answer to why I was lucky except perhaps the gift of humor, always my savior, always my life force, why I chose the husband I did, and why at the end of the day, with my body literally vibrating from tension, he would spin a phrase so apt and so funny that whatever the actual chemical antidote to disease, this for me certainly must be it.

©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

Medicaid Mix-Up But Power! 11-01-11

Waiver Whatever: I took our daughter to her doctor and ran into a bunch of bureaucratic glitches that broke my spirit for the moment. Unfortunately my condition was frightfully contagious and my poor daughter caught it.

Bored Yet? Not to belabor the boring, of which I am often guilty, the Doc’s prescription for an antibiotic for her sinus infection was not covered. The pharmacist informed us that her Medicaid coverage expired August 31. After much back and forth with various folk, poor cell access, and our daughter, already feeling “dizzy”, pacing through the aisles in her sorceress costume, we left, medicine in hand, out-of-pocket seventy bucks and a lot of worry about what has gone wrong here with this giant bureaucracy upon which she is dependent. Of course this means coverage for the doctor’s visit is snafued as well.

Contagious Complaining: Many subsequent calls mentioned the waiver, which is related to the federal government promising the state reimbursement for part of her Medicaid payments and the likelihood that something simple like a delayed rubber stamping process, is the culprit. But Mom was sick, cold and unshowered and my complaints were contagious.

Adios La Quinta:  The good news came in during our encampment at CVS. Power went on at the girls apartment so no need to hang out at La Quinta Suites, with the  night staff, poor soul, seated in an arm-chair by the window. Nope, the young ladies could resume normal life at their beloved CRS. And though my daughter referred to this day as “One of the worst days of my life” thanks to her burned out momma, she was pretty comfy by the time I left her apartment, though I remained unshowered (tried to shower there but the water was still chilled), sick and worried about this Medicaid snafu.

Fingers Crossed: I am so old and “wise” that I grasp that living is composed of a continuous sequence of emerging obstacles, overcoming obstacles, rejoicing in that achievement until the next obstacle rises up, each day, every day. Most of these obstacles are little, like power outages, and bureaucratic glitches. Unless those glitches become insurmountable obstacles to our daughter’s comfort and safety. Fingers crossed, a glitch is just a glitch.

Jill Edelman, M.S.W.,L.C.S.W. 2011

Power-Less Sorceress: 10-31-11

Happy Halloween: There are 800,000 households out of power in the State of Connecticut. Our daughter’s CRS is amongst them as well as her folks’ abode. Her bro is blessed to live in his “rabbit hole” in NYC, stocked full of power and all the carrots he can eat. The second power outage since the ladies moved to their apartment in Ridgefield. Irene soaked and joked us. Now a Halloween Christmas prank has broken our trees as if they were pick up sticks with orange ruffles wrapped in black power cables (it is Halloween after all) dangling into and over roadways themselves strewn with autumn leaves, bark, branches and the occasional fence post.

The Good News: The ladies managed well for the first couple of nights while ABD searched frantically for a motel. No slots within an hours’ drive. But tonight they will board at the La Quinta something in Danbury. Super. And they were able to attend the Halloween costume party today at their DSO, which does have power

The Sorceress: Our daughter chose her black velvet sorceress costume over the Scarlet O’Hara number, both part of the extensive wardrobe garnered over five years of Riverview Halloween dances. The little sorceress, despite a genuine sinus infection, soon to be diagnosed by a real doctor, is managing well. She dearly misses a hot shower, Internet and TV but has her apartment buddy and the mall was open yesterday.

Her staff are awesome.

Vocational Update: On that front, no word yet from ROAR on the ringworm situation, though their bigger issue could be lack of power. But, prior to the storm, the senior residence Ridgefield Crossings notified us that they are ready to roll. Our daughter starts her volunteer work this Friday with a senior and her cat. Am I wrong to assume that a senior residence would have a generator? If not, could be another delay.

Mother Nature: I think of you as my friend. When folks ask what I believe in I say Nature with a capital N. Now with two storms, some ringworm (is that a mother nature thing?) and human error, our daughter’s three months (tomorrow) in her CRS have reinforced my belief, Mother Nature Rules. Fingers crossed she will be a benevolent ruler for a change.

©Jill Edelman, M.S.W., L.C.S.W. 2011