A Hairbrush, Forgiveness and Natalie Wood: 11-19-11

Happy Birthday To Grandpa: If our daughter’s maternal grandfather were alive today, he would be 101 years old. Wow. Our children never met either of my parents but their presence is felt by my children in my presence as their parent. Happy Birthday to you Dad.

A Wake Up Call With Horses: My iPhone showed a call made from our daughter’s apartment at 8:34 this morning, which I missed. Oops, I thought. Trouble still in the air, I felt a strong desire to ignore the call. But how could I? As I suspected, the apartment-mate did not want to accompany daughter and staff to Pegasus and watch our daughter ride. O.K. I jumped into jeans and other things and dashed to the apartment to take our gal to meet up with Sneakers, and Pegasus crew. Once at the apartment, instead of being greeted by grumps, my daughter and staff came out of the building smiling ear to ear. Apparently the girls had made up this morning. How? Staff explained that she sat our daughter down, reviewed the importance of friendship, the meaning of Thanksgiving (hey if the Indians and the Pilgrims can do this!) and Voila, the girls refriended. All forgiven but I still had to drive the lass to the horse.

Hairbrush: The day is beautiful and the riders jumped and posted for forty-five minutes. When we returned to the car, our daughter removed her helmet and began to brush her tresses. Stop! That brush again, weighed down by a collection of hair. Yes, I did. I asked if she had her other small brush in her purse, using it to pull that mat of hair out of that brush. I told her that I could throw the hair out the window (I didn’t) because birds use human hair in constructing their nests. “Oh good, they have a hairy nest.” Well, yes. We laughed, but I have to say the staff dropped the ball here. I guess they have other things to do, like meet as a security council and decide whether to intervene on warring nations. Priorities, Mom!

Natalie Wood: Pop culture and news being major attractions for our equestrian, naturally the re-opening of the case of Natalie Wood, a current hot topic, dominated the conversation on the ride back to her CRS. Natalie Wood, known to our daughter mostly as Maria in the film version of West Side Story. (You mean she wasn’t the one singing? Sadly no.) Now let’s see. Was Christopher Walken having an affair with Natalie and did hubby Robert Wagner find out, fight with his wife and then… (drum roll), either push her into the dark seas or not look to find his gorgeous wife? And, my daughter wondered, did they have children? I think so. And why did this come up now? All great questions. Our daughter concluded: “I don’t think they will ever find out what happened. Like with Jon Benet Ramsey, they never did find out who killed her.”

Pop Culture Commentator: Shouldn’t this girl have a gossip column? Or at least be a movie critic or pop culture commentator on cable? Love to get her career launched. The animal specialty has had so many blips, makes one wonder if another direction would be more reliable. When can I get this girl to write her blog, her book? I have invited her to contribute to my blog. She smiles but nothing happens. Oh well.

Setting Positive Patterns For Future Skirmishes: This round of interpersonal difficulties at the CRS with spill over to SPHERE, took up ten tedious days of my life (It’s not about you Mom) and the lives of the girls and their staff. My hope is that now that they have a paradigm for how to resolve conflict, they will get to the resolution sooner, with the likelihood that since their (“girl thing”) cycles are in sync, we can ward this conflagration off by a variety of measures not worthy of discussion at this time.

Fingers Crossed!

©Jill Edelman, M.S.W., L.C.S.W. 2011


War: 11-18-11

The Honeymoon Is Over: Coming off of her Katy Perry moment replete with a meet, chat and photo-op, I was hopeful, with a measure of trepidation, that our daughter would return to her CRS in good spirits and a bountiful heart. Alas, no such luck. Her mate was battling her own demons this week, some reactive perhaps to our daughter’s (angst is contagious, anxiety is viral, and all of it is provocative) as well as stuff of her own making, so the last twenty-four hours have been fraught with clashing wills and words, culminating in a few really bad moments. Oh dear.

Stuck Together: It is three and a half months since the ladies began their shared life and the last eight days have been the most serious challenge for staff in the interpersonal conflict zone. Apparently the assistant residential coordinator and the vocational life skills person sat down with two young ladies this afternoon (each back from their volunteer work) to play a “social” board game aimed to create understanding and forgiveness. It backfired, with both girls accusing the other of being at fault. Our daughter called crying, full of indignation and anger. The other young lady’s mom had taken her out this morning to get some air. Nothing much is working now and both are off to their rooms, our daughter busily texting and calling me. It is very difficult; after all they are “stuck together.” The suggestion that they go to the recreation center this evening to exercise/exorcise the demons within was met with “I don’t want to go with her.” However, they do have to go “with her.” One staff, two gals, one car, one home. Sounds a lot like real life, doesn’t it? Siblings, spouses, limited space and the complete absence of empathy for the other’s experience.

Couples Crisis Intervention Needed: Couples therapist though I am, I cannot negotiate this one. Once I did a couples’ session with our daughter and her boyfriend. I had to, as they blew up at each other in a public setting and I was the only parental body on the premises, the others blissfully off snow tubing. I dragged the two love doves to my car, where the young man desperately tried to explain his feelings while our daughter shut down, though she was willing to offer minimal comfort, some hand holding and mouthed the words “I forgive you.” But she really never did fully forgive or maybe she forgave but never forgot. Sadly for both of them. The music from Sweeney Todd, the Johnny Depp version, was playing in the background, my choice to give our daughter a focus as she was not engaged in the therapy process at all. Was I successful? Sort of, it calmed them down for the rest of the weekend but ultimately they never fully recovered their bond. Probably needed ongoing work, as all couples do.

Dad To The Rescue: My husband just called his daughter to offer his services, a ride to the mall, a bite to eat. She turned him down “I am not in the mood.” Cheeky girl. Well, I for one am off to work and grateful for it.

Fingers Crossed: We can’t blame the full moon, that’s passed. Their cycles, waning. Jealousy? Too much proximity? Whatever, fingers crossed they will remember that they care for each other before much damage is done. That is always my hope for my couples. Come in before the bruises form thick scar tissue and accrue, like plaque build-up on artery walls, repair impossible. These are young girls, after all. Young hearts. Clean arteries and hopefully a bright future for their “shared life.”

©Jill Edelman, M.S.W., L.C.S.W. 2011

Amongst The Stars: 11-17-11

11:41 P.M. Our daughter must be meeting the star. Do these mega star concerts run this late? It is Wednesday night and our daughter went off to the Katy Perry concert without hesitation. In the car into NYC I told her that the concert was at Madison Square Garden, a place like a stadium. She says, “Like the Westminster dog show?” I forgot that but she didn’t. Probably five years ago my sister took us to the dog show at MSG. And after all my worries, she not only knows the venue, but glides off with the gals non-plussed and is possibly meeting the star as I sit poking my digits at the iPad key board, dying to go to sleep. Looks like she made it.

Evidence: At 9:23 I received a photo of beaming daughter at concert fitted out with orange ear plugs appearing nothing short of ecstatic, seated next to gorgeous friend while her sister snapped the image. So super sweet and kind of these extraordinary ladies.

12:13 A.M. Still not back up town. Can’ t go to bed because I have to come down to the lobby of my niece’s apartment building to meet the ladies. 12:21 A.M. just got the call. Heading down to lobby. Apparently our daughter met Ms. Perry, spent time chatting and lots of photos later, they are heading uptown. “Amazing time” they said. No doubt.

Yes, I am in my PJs. But I’ll don my coat and boots. No paparazzi after me, but can’t speak for the daughter, star magnet that she is.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Happy Birthday, Blogger Guy!

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

Not Checking In: 11-15-11

My Plans: It is 10:30 a.m. and our daughter is at day two of DSO. Last word from her came yesterday afternoon when a 3:24 P.M. text buzzed my way. “My day went well,” followed by a phone chat informing me that she is missing her watch and one doggy patterned sock. Please deliver. So far no watch has surfaced but have located the doggy sock. Deep breath, don’t want to check in. Just want to return to my life; seeing patients, cleaning up laundry room after paint job, writing, and searching for inspiring Thanksgiving dishes. Not easy, that last one.

Fingers Crossed: Maybe I will get away with this plan. The day is still young and most likely I will hear from ABD staff as well as the DSS case manager with a follow-up regarding the Medicaid coverage delay. Last night my book club/former baby group came over for our monthly schmooze and after clear out and clean up I went off to bed pretty worn. A half hour ago, the doorbell rang whereupon I had to sign for a FedEx envelope addressed to my husband, then finished dressing and proceeded to clean up the few dishes from the morning meal. As I was tossing out the coffee dregs in the garbage, I found the Fed Ex envelope there, unopened and now smeared in Starbucks’ Sumatra grinds. I construe from this that I am in need of down time. I am going to pretend that our daughter lives very far away and is fine. Wish me good luck.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Minds Have Met Before: 11-14-11

Medicaid Mystery: Earlier today after dropping our daughter off at the DSO (her social group program) I swerved west to DSS (Department of Social Services) to inquire in person what was up with the Medicaid issue, after receiving an email from the DDS case manager (Department of Developmental Services) who suggested I contact the DSS case manager. Can you follow this? I can’t but I figured in person is best. An hour and a half later the mystery into why our daughter’s Medicaid coverage was dropped August 31 was partially unveiled. Partially. Though we have provided complete “transparency” that our daughter has no money sources outside of her entitlements, a couple of little blips on the screen confused the decision-making bodies. O.K. But then what else happened? Something about the waiver, different types of Medicaid coverage programs and that our daughter is not in a licensed group home but a CRS, which is considered in the “community.” Excuse me. Can anyone follow this? I sure can’t.

Kids and Screens: While I waited the hour to meet with our daughter’s DSS  CM (insider’s acronym for, you guessed it, Case Manager) I turned to my iPad2 to work on today’s post. I thought it was hilarious how magnetically drawn the youngsters in the waiting area were to the screen. And I mean youngsters, maybe 5 and 6 years old, had to dip towards me to sneak a glance at the pad, probably looking for some Dora the Explorer game or whatever else is fashionable amongst first graders. Besides these few moments of humor, mostly what passed the time was scribbling on the pad (I ditched most of it as my writings there turned out to be dribble) and when I finally met with not just one CM but two, I realized that the four relevant bodies, ABD (Ability Beyond Disability, a non -governmental, non-profit service agency), DDS, DSS, and Medicaid are like The Sun and The Moon, The Earth and The Stars, all separate planets with some interdependence but not much in the way of communication. HA! Jokes on who?

Minds Have Met Before: Last evening in preparation for forthcoming meetings on our daughter’s challenges, I reread ABD’s “Behavior Guidelines” dated 10/27/11. All the issues cited are old and chronic though improved by degrees: focus, attention, moods, follow-through, difficulty waking up, going to bed, cleaning up, waiting her turn, not interrupting,  anxiety. Many minds have met over two decades pondering these challenges and producing reams of paper to facilitate solutions; IEP’s at PPT’s and testing evaluations and doctors’ recommendations. I wonder, if someone tracked me over the ample decades of my life, would my issues be as consistent, my challenges thematically the same, with mild to moderate degrees of improvement, aka maturity here and there,  as my daughter’s seem to be? Still interrupts, distracted often, hard to wake up, difficulty going to sleep, anxious. Wait, is that the mother or the daughter? Both.

Many minds have met, and more will meet.  But the themes remain the same, no silver bullet has ever been located and hours of talk, talk, talk, have floated up to the heavens, lost in space like ever so many wisps of dandelion weeds, never to be seen or heard of again. Yet, I know, no matter how much material I provide to each new body of educators and caregivers, they all have to process the data and the girl, using their tools and protocols. It is all process, life. Who knows that better than a therapist?

©Jill Edelman, M.S.W., L.C.S.W. 2011

Home Heals: 11-13-11

Sunday, A Day Of Rest: Today our daughter is with us. She slept here last night, a good and restful sleep after “The worst week of my life.” It was a rough week, littered with interpersonal ruptures that took their toll with familiar melt downs so characteristic of this time of year, SAD (Seasonal Affective Disorder), that “time of the month,” the full moon and schedule pressures. The good news is that her animal care jobs at ROAR and The Complete Cat Clinic remained unscathed but I felt the need to step in and gave her the choice to sleep “home” last night to prevent any damage to her warm relationship with her apartment-mate, as there was some spill over from the week’s difficulties.

Reruns of Drama in The Dorm: My husband and I recalled how at least twice an academic season at boarding school, our daughter needed rescue from “drama in the dorm.” “People are trying to get into my business” would translate to “bring her home for down time.” Though the dramas occurred outside the “dorm”  this year, the dynamics were the same. ABD (Ability Beyond Disability) has been wonderful, including telephone conferencing at 9 P.M. last evening. The residential coordinator impressed me with her grasp of our gal’s dynamics and consultations are in the works.

Recovery: The star magnate has a date to see Katy Perry in concert at MSG (Madison Square Garden) this Wednesday night with two super ladies in the entertainment business. In light of the recent downturn, I asked our daughter if  she still were up for the event and this morning received an affirmative response. I know she has no idea what she is in for, which is unsettling. Friday evening I  watched the HBO filming of the Madison Square Garden Lady Gaga concert and O.M.G., though Katy Perry is not Lady G., just the size, the sound, the lights, the bombardment of sensory stimulation might be over the top for our gal. I plan to be on call to bail her out if necessary.

Momma Boundaries: But the ladies invited her, and she signed on to go. Beyond some heads up for the escorts, I leave this to the powers that be, with Fingers Crossed, that a good time will be had by all. Typical parental role, I know.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Shaking Things Up: 11-12-11

Friday’s Visit:  Yesterday afternoon I stopped by to drop off a check for our daughter’s November recreational costs. Though entitlements fund rent and staffing, food, household goods and Medicaid, (if they finally reinstate her) nothing is left over for costs such as clothes, furnishings, and outings of any kind including movies, the recreation center, Sphere and Pegasus. Each month, each mom forks over $140 for the girls’ other needs (which is in addition to paying membership fees or class costs for Pegasus or Sphere or Ridgefield Recreation Center.) When I arrived our daughter was upstairs on her laptop, probably watching The Pacific but came down to chat and open up a birthday card from a Riverview classmate. I was so happy to hear that her first morning at ROAR was a success. They trained her to clean out a cat cage. And then she went off to The Complete Cat Clinic where she also had a good experience. Later, when her apartment-mate returned from her volunteer job (their schedules are flipped so that one staff member can serve both girls, which is how their fundings are collapsed to provide optimal coverage within a tight budget)  I actually met the new vocational life skills person who seemed on the ball and substantiated my perceptions of what occurred the day before at the Senior Residence.

Shaking Things Up: Knowing that our daughter has begun her pre-winter seasonal slump (which I believe correlates with  a seasonal affective disorder as I have observed this downward trajectory since her elementary school days and have looked into allergies, homeopathic remedies, and much else) I offered some suggestions to her residential staff. Research has shown that the more uninterrupted hours you sit before any screen, television, video or computer, the more mood is negatively impacted.  Besides the obvious deleterious effects that a prolonged sedentary state has on our bodies, the endless hours of staring at the computer screen is a ticket to a grumpy kid or adult. In addition, exercise and oxygen (as in getting outdoors) , social contact and variety, stimulate endorphins and counteract depressive tendencies. So ladies, let’s shake things up here.

Too Much Screen Time: The commitment to physical exercise, swimming and the gym, has been implemented by the ABD staff but illness, power outages, shorter days and schedule issues have interrupted what was in the first months of CRS  (Continuous Residential Support), a fairly active lifestyle for the apartment-mates. While our daughter’s mate enjoys and is able to play board games and cards with staff in the living room, which I observe when I visit, I often find our daughter up in her room at her desk on Facebook or watching a movie on the computer. Though her choice of movies is pretty high level, stimulates her thinking and expands her knowledge base  and her interactions on Facebook are age appropriate social exchanges, the sedentary, monotonous process of screen involvement needs to be shortened and interspersed with “activity.” I think this has been a significant contribution to her recent emotional decline.

Staff Agrees: When I left the girls yesterday, after conversing with staff about this issue, they were inspired to go off to the Recreation Center to swim and apparently stayed in the pool for a full hour. Super. Staff gets it completely. But I will follow-up with an email to the higher-ups regarding monitoring our daughter’s time on the computer, with plans to create more variety and movement, indoors and out, so she doesn’t suffer from computer hangover.

Follow-Up To Vocational Flop: Don’t get me wrong. I am not impossible to please. Grateful that ROAR gets our daughter, gave her a job she could do and according to the ABD vocational staff member, seems to have a handle on how to work with her, I am not on a roll to castigate or reprimand for Thursday’s flop. But I have asked for a meeting with ABD vocational and residential staff coordinators, which was supported by a staff member who agrees that clarifying our daughter’s strengths and challenges with sensible parameters would be good to do, again. I understand that we are in the early stages of “adult independent living.” Much to learn for all of us.

Distance Is Good Too: I have to say that when our daughter lived 200 plus miles away ten months a year, for five years, subtracting vacations home, distance was not a bad thing for an intense mom whose boundaries can be a bit porous. I am sure for staff working with our daughter, that maternal distance has its virtues. For daughter, definitely. Those five years at boarding school were all we could have wished for her. She developed greater confidence and skill in every pore of her being. And though mom and dad are only eight miles away now, thankfully she is still growing, despite the maternal magnet to the east. Once the seasonal affective adjustment works its way through her system and my reactivity to her/it, we should be back on a more even keel.

Fingers Crossed.

©Jill Edelman, M.S.W., L.C.S.W. 2011

Is This A Joke? 11-11-11

Gin Rummy: Our daughter’s first day of volunteer work at Ridgefield Crossings was a bust. The senior lady with the cat was out at a dentist appointment when our daughter and her staff escort arrived. So instead of being a “companion” she was asked to play cards with other residents. Gin Rummy. Did anyone read her file, the scores of reports from her school, the vocational data meticulously documented by her teachers and placed in neat folders which I copied and passed along to Ability Beyond Disability and then reminded them to share and share and share? Gin Rummy. What transpired?

Set-Up For Failure: When our daughter checked in with me early afternoon yesterday to tell me she borrowed the series “The Pacific” from the Ridgefield Library and two holocaust movies, including Sophie’s Choice (“It was hard to follow the story”) I inquired into how her new job at Ridgefield Crossings went. She told me the tale of the absentee senior. I shifted quickly to cover my disappointment and frustration, asking if she were excited about ROAR the next day. Big pause. Big pause that signals trouble. Uh oh. “Is there a problem?” Her answer “I am having trouble with focusing.” O.K. “That’s O.K. That is a part of your disability. You are working on that.” Then she mentions the card game, “I was having trouble with the card game.” Card game? I figured that when she came back to her apartment, they played cards. Funny, our daughter doesn’t really know how to play cards, maybe Gold Fish. Games, numbers, money, are areas of significant deficit for her, in fact her most profound deficit. I could hear that she was discouraged. Shortly after we spoke, when I called the vocational coordinator, did clarity set in. Our daughter had been asked to play gin rummy at the senior residence, with her staff attempting to teach her the game on the spot and of course she wasn’t focused. That is like teaching me to speak Chinese over hot and sour soup at the local take-out. Naturally, she felt like she failed. Great. And she was taking that feeling to her next new volunteer job today, the long awaited animal shelter ROAR, where one assumes those residents, the cats and dogs, will not be out at dentist appointments. Jeezus Beezus!

Prevention: That was the word I uttered over and over with both the vocational coordinator and later the residential coordinator. Prevention. How about Preparation and Prevention? PP. These volunteer settings have to know who our daughter is in advance so they don’t set her up for failure. And the ABD staff on site should provide the essential data to enlighten them. The only job so far that has worked out is the one I arranged two years ago at The Complete Cat Clinic. Is this a joke? If it is, why aren’t I laughing? Poor kid. This just isn’t fair.

The Curse of 11-11-11? Frankly I am not going to cross my fingers on today’s ROAR event. I’ve lost my optimism and am not inviting any more disappointment for her or for me for the moment. Can it be the curse of 11-11-11 that is sucking the optimism out of my veins? The honeymoon is over and adult independent living has hit some mighty big pot holes.

©Jill Edelman, M.S.W., L.C.S.W. 2011

The Senior, The Cat and The Daughter: 11-10-11

Ridgefield Crossings: It is a beautiful day in the neighborhood, burnt orange leaves glisten with gemstone rain drops outside my office window, framed by streaks of blue, grey and white sky and our daughter is off to her new volunteer job. Hurrah. Fingers crossed, the senior, the cat and the daughter get along. Is the moon still full? According to the Clark Planetarium website, it is a “Waxing Gibbous Moon.” May it wax positively in our daughter’s direction.

Holiday Pressure: With the holiday season upon us, an atmosphere, starting with her birthday, that triggers our daughter’s acquisitive instincts to the exclusion of much else, I can not be certain where our daughter’s focus will be today. Visiting her local library yesterday, she stumbled upon the DVD collection for the HBO series “The Pacific” and became obsessed with owning a copy. This lead to a series of texts all evening, resumed promptly at 7 a.m. this morning, requesting that we buy the $44.99 collection from Amazon. I read in her texts the urgency and pressure she is feeling; “I must have this now.” and it fills me with anxiety. I know this script. We finally resolved the written conversation at 8:15 a.m. with her compliance to wait for Christmas and in the meantime, borrow the collection from the library (she is afraid she won’t be able to finish it by the due date, though she is told that she can renew.) This isn’t about reason. This is about a search for some kind of satisfaction, some inner longing that only a specific object can satisfy and it use to run our lives.

ROAR Confirmed:  Yes indeed, she is scheduled to show up at ROAR with her vocational staff at 8:30 a.m. tomorrow morning to begin the long sort for volunteer opportunity. She has waited years for this, since she chose animal care as her focus at Riverview’s post secondary Grow program in conjunction with Cape Cod Community College. Will her focus be on how many days until Christmas, (that was the text question this morning) or will the four-legged clients move her to alternative sources of satisfaction, other than the lust and longing for material goods.

Fingers Crossed: May the lure of the animal kingdom triumph over the siren call of the holiday season. Fingers crossed.

©Jill Edelman, M.S.W., L.C.S.W. 2011