A Small Adjustment With Big Implications: 8-8-13

Who Will Teach Her Now? In a June 2011 post I wrote of my concern that our daughter, having aged out of her school system at 21 years old, would no longer benefit from an academic setting. The areas of significant challenge, time, money and numbers would languish on the vine, leaving that group of deficits as a major hurdle to more independence.

Two years later I have seen little that relieves this concern in regard to those areas of challenge, though the matter has been raised at semi-annual reviews and computer programs are being put into place. But one obvious resource was not being used: the cell phone. Our daughter is screen skilled, text skilled, telephone skilled. I had requested that she be taught to use her phone for alarms regarding medication times and wake up times yet the phone, as a time and schedule resource, remained dormant.

A Small Adjustment: Schedule content is easy for our daughter. She knows her days and their activities including who is in what group, at what work site, which cat had kittens, and so on, which is saying quite a bit as no two days are a like. But as to hours that these events begin and end, our daughter is lost. Last week, when discussing pick-up for a family weekend, our daughter turned to her staff to provide the time of her return from her volunteer job. That did it for me. The dependent almost pleading look on her face when speaking to her beloved staff member resembled a young child, not a twenty-three-year-old woman. And it troubled me. I wasn’t doing my job to leave her so “young” – was I?

On my drive back home, my mind shifted from guilt and concern to problem solving. Jeez, everyone on the planet, and I mean the planet, having seen Berbers in the Moroccan desert on cell phones, is cell savvy, utilizing that little gem for calendar, time and information. Our daughter knows how to research anything on her cell from “Who is dating Katy Perry now?” to “In which concentration camp did Anne Frank spend her last tragic hours?” She can text, send emails, listen to iTunes and check movies on Fandango. But not knowing when she comes back from her Pegasus volunteer job? This has to be the easiest and most neglected “educational intervention” of all.

The Dangers of Appealing Dependency: Two hours later and the aforementioned staff became cell phone calendar and time savvy along with our daughter as I took them through the set-up steps over my cell phone. Alarms were in place for the twice-a-day Focalin medication. Each day of the week the phone calendar will be filled with the specific times of drop-off, pick-up, all things time related, hopefully with our daughter inputting the information. Why wasn’t this simple peer appropriate, easily accessed format in place two years ago? Answer: other issues were getting attention. But here is the worrisome part. Our daughter is adorable and I know that her “dependency” has an appealing quality to others. “Ah, she needs me and this is an easy need to meet.” As her mother, I have fallen victim to this charm throughout her lifetime; as a professional in the helping field, I am no stranger to the allure of feeling “needed.” Part of the attraction to the helping professions is the joy one receives in helping another. But beware the charms of the needy adult, special or otherwise. We can enable and prolong dependency easily and subconsciously when it is delivered/packaged in cute/precious and affirms us as caring, competent adults.

Concepts of Time: I don’t know if our daughter will develop the more abstract notions of time passage as in, the movie will be over in two hours, the jewelry class is an hour and forty five minutes long and begins at 6:30 or the plane ride to Florida is two and half hours. But continuously reminded that she has the means to answer these questions, our daughter can check her calendar to see that the plane is expected to arrive at Sarasota airport at 3:40 and her phone indicates that it is 2:00. Therefore she can return to reading Soldier Dogs on her mini iPad. And if she needs to check again and again for further updates, or wishes to set an alarm for 3 P.M. though flight attendants are unnervingly adequate human alarm clocks for such updates, she has the independent means to do so.

In Fact, They Are Always Teaching Her Now: In fact, our daughter is learning new skills all the time, through experience and maturing, but mostly through the painstaking work of the Ability Beyond Disability Staff. Special Needs is such a crazy quilt of disabilities and abilities, some seem so basic and mundane yet in fact, they are exceedingly essential. One such skill is blowing one’s nose. Our daughter has been unable to blow her nose with any success throughout her twenty-three years of life. As with most of us, she gets lots of colds and has some allergies as well. Sinus infections have dogged her for two decades with all their requisite discomforts, pressure over and under the eyes, fatigue, rotten moods leading to interpersonal mess-ups and lost days. Just yesterday her staff excitedly informed me that our daughter, after months of training, and in the throes of recovering from the latest round of nasal challenge, has learned to blow her nose. And while visiting an hour later, I was invited to witness this new achievement. Staff to daughter: “Remember do it like you are blowing out candles with your nostril.” Months of training have produced a lifetime of relief. Unbelievable. I could never teach her this skill. All those tissues, all that mucus, all her “mom I can do it” never resulted in success. It can take a village even to blow a nose.

Forever On Guard: While swimming in the Gulf of Mexico with my daughter in early July, in water so shallow that generally it reached only to our waists, a very frightening experience occurred. That particular day the water was deeper for some reason, perhaps related to shifts in the sandy bottom through tides and storms. Accustomed to being able to swim freely, our daughter headed out farther and farther with me trying to keep up. At some point, neither of us was able to stand so I asked our daughter to come in closer to shore. She ignored me. Swimming alongside her, I repeated my request. Then I saw that our daughter had swallowed water and was coughing. This went on for a long time. I knew what could happen. If she continued to be unable to swim because she was struggling and coughing, I would need to do the Red Cross life saving maneuver to bring her safely to shore. Instinctively I felt that our daughter would fight me if I tried. I was quietly pretty terrified and looked around for help. None in sight. We both continued to tread water and eventually her coughing subsided and our daughter regained her ability to swim. At no time did our daughter seemed alarmed and we both “calmly” swam back to shore. But for me, loads of alarm bells went off.

Who Will Teach Her This? Our daughter as a young child learned to swim through individual lessons provided painstakingly over a great deal of time, with humor and skill by a wondrous P.E. teacher from our elementary school. Group lessons wouldn’t work and as we didn’t have a pool, friends offered the use of their pool over several summers. Our daughter learned to swim and proceeded to compete in Special Olympics. Today, she adores swimming; it is her favorite outdoor activity. Yes she can swim, though the utilization of both arms while doing the crawl is, well, missing. But can she also be saved?

After we returned from Florida, I sent out a big fat group email to her staff. Who can help us here? And once again, staff stepped in. They take her swimming often to a local lake and to the Park and Recreation pool, both with lifeguard coverage. Yet, the message was clear. More safety precautions are needed. The staff responded immediately to my request for some type of training and have set up a class for our daughter and her apartment mate to be acquire ability to respond appropriately if aquatic life saving techniques were needed. I will let you know how all that goes.

A wake up call indeed: I was very clear that if our daughter needed saving by me in the Gulf the last day of our Florida family vacation, we both would have drowned. I need the training too.

Never Stop: Parents can never stop being vigilant about the health and happiness of our children, so long as we are functional adults. With a special needs adult child, this usually means a great deal more concrete intervention than would need to be employed for a more independent adult child, even with the incredible dedication of a team as caring and skilled as the Ability team. More eyes, more ears, more ways to make sure that our daughter will be safe and fulfilled. And when I am no longer that functional adult, I will pass the torch on to others, our son and our family. I am as vigilant with our son, though far less is concretely required; he is self-sufficient in every area. Yet he and I both know that I am watching with the same vigilance and passion that his sister receives from me. Still, the difference is enormous.

The Good News: Yes, the good news here is that many are teaching her now. And she is still learning, a reminder that Special Needs adults need never stop learning and maturing.

Jill Edelman, M.S.W., L.C.S.W. 2013

Riverview School Two Years Hence: 6-27-13

A Place Where Everyone Knows Your Name: June 14 our daughter and her parents sallied up to Cape Cod to attend Riverview School’s Fifteenth Annual Gala under the castle-like shimmering white tent on the campus in East Sandwich. Except for one sad and brief visit in September of 2011 to attend a memorial for a former classmate a mere two months after her graduation from Grow, Riverview’s post secondary program, our daughter had not been back to the school that housed her and loved her for five fruitful years. She told us as we drove in that she felt nervous. No sooner had we stepped out of the car than one of her former teachers spotted her and called out her name. Seconds later her guidance counselor came across the drive in front of the splendid new James Center to do the same. And it went on much like that for the entire afternoon and evening that we spent revisiting a place “where everyone knows your name.”

Our daughter’s reception by former dorm counselors, educators, custodial staff, administrators and schoolmates, who were packing up their dorm rooms and rehearsing for Sunday’s graduation, was warm, humorous and personal. Two years was as nothing for the dedicated staff and faculty at this bastion of special education, the best there is to be found from one coast to another in this country. They knew her and she knew them! They chuckled, calling her Madame and other terms of endearment held over from years passed. This was the place that we brought our daughter to live and learn in September 2006 and frankly one that I never wanted to leave. This was the place that was peopled by parents with whom I had little to explain, who knew the journey, a place where we could all affirm our children together, with the respect they deserved. At last.

A Cherished Home, However Temporary: Our plan was to attend the Gala and then leave the next morning for a visit with family in Maine, and that is what we did. My one concern was whether our daughter would become restless and bored, now that she was an alumnus, and therefore not a part of the student event that evening. Instead she was a guest at a table of adults who were listening to speeches and bidding on live auction items whilst sipping wine and dining on gourmet courses generously provided by area restaurants. But to my astonishment and joy, our daughter had no such moments, lasted out the evening with greater stamina then her old mom, and vibrated with humor and pleasure when greeted by faculty or upon hearing someone with whom she had worked mentioned in speeches. The maturity acquired by this young woman since her days at Riverview was never more obvious to me. She was gracious, confident and able to sustain both energy and interest through an evening geared for adult fundraising and honoring others. She continues to grow, wherever she goes.

The Glow of Gratitude: My other focus of attention was on the faces of the parents at each table, faces that were, well, ecstatic, glowing faces with broad grins and easy chuckles. This is hard to explain but parents of special needs children will understand. Riverview is a cherished home to families who are lucky enough to have placed their children within their campus walls. And when we are gathered together to honor that cherished place, there is no greater joy than to affirm that gratitude and celebrate the dedication of its leaders and faculty. And so, as the parent, you never want to leave, ever. Because Riverview gets it and gives it like nowhere else, thanks to its vision, its mission and its incredible grasp of what it is to be challenged, gifted and unique in the world.

The Measure of The Months: And so we moved on to Maine, and out of Riverview’s warm embrace. Yes, I guess, I did leave my heart in East Sandwich but our daughter did not. She is thriving in her new life in Ridgefield, an adult with increasing independence that is marked each month by new achievements and skills. How to measure that growth: easy. Yesterday for the first time ever, she willingly performed in a play that her Ability Beyond Disability day service program put on. Her role was as a grandmother, wearing a long white curly wig and sporting a cane. Dressed in an ankle length red dress, she memorized and extemporized her lines, bent over with a hand placed on “my aching back, oh my sciatica” while blessing her grandson and his wife on their planned nuptials in a drive-in wedding ceremony in Las Vegas. A theater lover and humorist, for years we had hoped that she would be able to express what we knew were her talents for both but instead she never seized opportunities offered at Riverview and later with the Sphere theater group she attended. At last, she found the confidence, maturity and right forum to do so. The director said, “She is amazing, perfect for improv.” And clearly the gal to play the character parts.

Responsibility and House Cleaning: The Ability Beyond Disability staff are also noticing increasing maturity and self-confidence in our daughter. At the play, the residential coordinator informed me that our daughter for the first time told staff she wanted to clean her room, independent of any initiation by staff and then went forward, dusting, vacuuming and basically establishing a sense of accomplishment, ownership and pride in doing so. That is a big wow/leap!

Her vocabulary continues to expand and an ever-increasing social awareness and grace flourishes alongside it. Last weekend she was invited to join “the adults” for a dinner at friends. Her response, “Mom, I like so and so dearly, but I don’t want to be with the adults tonight. I want to be with people my own age.” I dove right in saying how gracious she was and that I would let our friends know that she said ‘Mom, I love so and so dearly….’ “ No mom, I didn’t say that. I said I like so and so…” She knows what she said and she knows the difference too between like and love and most importantly the boundary between mom and me.

Boundaries: Our daughter has always guarded the boundaries between her parents and her self, wanting since early childhood to be her own boss, initiate her own agenda, and define her identity as very separate from both parents. So she didn’t want dad’s paintings in her apartment and she has shown little interest in mom’s book though, with her permission, the book is illustrated with her collages. However, recently I was invited to talk about the book at our local library and brought along six or so of her framed pieces, again with her permission. One of the attendees was so awed by her talent that she invited our daughter to place a collage in a prestigious art exhibit in New York City at the National Arts Club. The piece sold. Here again, our daughter is full of surprises. She wanted to go to the opening, which I had not expected, but once there was overwhelmed by the crush of the crowd and all the strange adults spilling in and out of the narrow rooms. But she stayed, with the help of her brother’s and his friend’s presence. Since then she has received more accolades and there is interest in showing her work in our town’s library art show. Something prevents her from celebrating this talent. Perhaps because she is not initiating all this, she seems to have little interest and remains perhaps cautious or, even more likely, resistant to pressures from others.

Complex and Intriguing Gal: She is as complex and intriguing a young woman as one can find, in the normal world and the world of difference. And for that reason, finding places such as Riverview and Ability Beyond Disability that know how to channel, celebrate and support growth in someone of her complexity is something every parent of a special child should aim for, as best they can. As the director of the theater performance said to the audience, these young people “bring out the best in us.” And people like this wonderful gentleman, and places like ABD and Riverview reciprocate by bringing out the best in these young people.

©Jill Edelman, M.S.W., L.C.S.W. 2013

Trophy Gal, A Note of Hope for Parents & What Friends Don’t Know: 5-23-13

Speeding Through May: This has been a glorious month for our daughter, and there is still another week. She was awarded the “Adult Rider of the Year” award at the 32nd Annual Pegasus Horse Show which was presented by her idol equestrian Georgina Bloomberg, a surprise that nearly blew her helmet off. In early May she spent five days in Disney World with two staff and her apartment-mate. We participated in her semi-annual meeting with Ability Beyond Disability where she listed her favorite activities: horseback riding and Special Olympics swimming. The following week I was invited to visit our daughter at her Pegasus volunteer job located at the Brewster, New York Equestrian Center where she works in their Rider’s Closet, founded by Ms. Bloomberg. I walked into a large room with two smaller storage rooms off it where neatly ordered donations of riding gear and clothing filled the shelves; helmets, boots, all manner of riding equipment and, seated at a table in the center of the big room, our daughter was vigorously applying polish to a pair of rider’s boots using old fashion elbow grease. Needless to say, the setting and the scene were enchanting. According to both Pegasus and Ability staff, our daughter has becoming increasingly efficient at her task and has developed quite the work ethic. The riding world is a world that our daughter has embraced since childhood and it is a world that has embraced our daughter, both as the rider and now as the worker. I rejoice in their mutual embrace.

A Hopeful Note for Parents: Our daughter’s trip to Disney was so joyful that it inspired daily texts recording all its many delights. No surprise there. Well, not exactly a surprise but what a contrast to the two trips our family took to Disney over a decade earlier. Is this the same child who couldn’t tolerate the Magic Kingdom because the costumed characters might approach her, the sinister Cinderella or Tinker Bell? Was this the same child who melted down in spite of a schedule that allowed for loads of downtime, along with continuous hydration and nourishment? And no, I never asked for accommodation for “our special needs child” so that we wouldn’t have to stand on lines. Frankly, that never occurred to me. Times have changed since the late nineties. Is this the same child who eschewed most rides, but now rode Space Mountain? (Though she vows never to ride it again, wisely, I think.) All was not a bust on those earlier trips. Our daughter loved Animal Kingdom, aspects of Epcot, and of course the swimming pool at our hotel, but her comfort zone was narrow and her meltdowns frequent. Sensory overload, and other factors were clearly at play but we had two children and she was a fan of Disney movies, a big fan. Most American parents feel this is a rite of passage in childhood and I really thought that our daughter would love Disney. And our son surely deserved to pass through this childhood archway en route to adulthood. But she really wasn’t ready for Disney yet.

If I could redo time, I would make the trip alone with him. Though I loved our Disney trips, the memory of the spoiled moments for our son leaves that taint of sadness and guilt that marks many of my memories of the ordeals for this sibling. But at that time, I didn’t think I could leave our daughter alone with her dad and other caregivers for more than a night or two. I was wrong. I thought Mom had to be there. It wasn’t until our son turned 13 that I left her for ten days and took him across the world to Israel. By then she was eleven and still my anxiety was off the charts. Naturally everyone survived and our son got his moment in the Middle Eastern sunshine and I liberation from having to “neglect” one child because of the unrelenting demands of the other.

Take Heart Parents: Special needs children do mature! And what once seemed like a Cinderella dream, “A dream is a wish your heart makes when you are fast asleep” can come true. Our daughter’s ability to enjoy the world of make-believe for five days traveling with others is further evidence of that fact for me and perhaps can spread some hope for others who are in the early years of this journey.

Semi-Annual Meeting: Every six months the Department of Developmental Services and Ability Beyond Disability meet and review our daughter’s program. Much like the PPTs of her academic career, a written report by each coordinator, vocational, residential, medical and Day Services programming, is provided to us and reviewed by the team. The DDS case manager was not at the meeting though she will review the “review.” Apparently DDS no longer requires case managers to attend the semi-annual meeting, just the annual meeting. Strange and concerning as that is, it is an even more concerning indication of the size of their caseloads due to budget cuts that such measures have been approved.

Who Is Teaching Her Now? My focus for the meeting was to raise the issue of skills acquisition, the same skills and cognitive challenges that have resisted significant change for decades: numbers, money, time and measurement, a theme that I spelled out two years ago on the eve of our daughter’s aging-out of her academic life, in the blog post “Who Will Teach Her Now?” and recently in my book, This Crazy Quilt: Parenting Adult Special Needs One Day At A Time.

Frankly not much has changed. There is a “cooking program” which seems to be at the most basic level of keeping her from leaving the kitchen. There does not appear to be a demonstrable increase in the area of measuring ingredients. The same can be said for acquisition of money related skills and telling time. The team understood my concerns and agreed to meet with the Ability “Tech Guru” to explore what new programs are available to aid in this area. This afternoon I received an email from one of the coordinators confirming that in fact a productive meeting with said guru took place yesterday, right on schedule. We will be receiving information on that meeting shortly.

Academic Stimulation Required: Our daughter is a learner, she is a sponge, she loves history and WWII and she needs a history class. My husband and I raised this issue at the meeting. The team knows our daughter very well so there is no need to convince them of this need. And our daughter, who was seated with us at the table in the conference room at Ability, supported our rendering of her desire. Where can she find this stimulation? No one knows. The local colleges don’t offer classes for adult special needs so we have to think out of the box. The Ability team agrees to think “out of the box” but it isn’t easy. Perhaps she can audit a class, take an online course with staff supervision. Certainly the team agrees that they can arrange more field trips to historical places. Work is needed to fill this missing piece out of respect for our daughter’s ability and to keep her stimulated. Boredom is deadly. And as she is continuously improving her vocabulary, her reading skills, her awareness of the universe in general, additional educational venues are necessary to keep up with her increased capacities.

What Friends Don’t Know: I had my first “author and book signing” event at our local library in what has been my husband and my hometown for over thirty years, the town where our children were raised and schooled, a fairly small town at that. Probably a third of the forty people who attended the evening event upstairs in the Mark Twain Library’s original 1910 building, founded by Samuel Clemens aka Mark Twain, which is how the library got its prestigious name, were friends, some very close friends: a neighbor who lives within shouting distance of our front yard; a couple who lives an hour away so when they visit happily they stay for hours; members from my book club, which has met once a month for twenty three years since our baby group was formed. And each one shared with me either in person or in an email that they had no idea how difficult family life was, how much went into establishing this “adulthood” for our daughter, just how much “stuff” was going on.

And I explain it all this way. Sharing all that “stuff” with our daughter’s community, after all it is her hometown too, felt to me as if I were betraying her. When you are raising a child of difference who may not manifest the same accomplishments of their peers, whose behaviors can challenge even the best of friends, you protect their image, you strive to ensure that they are respected, that they receive the same respect as anyone else’s child receives, at any age. So you share what’s best and try to keep the rest under wraps. It wasn’t easy and I was sure folks knew more, saw more and heard more than apparently they did. And I tell the truth when I do “share.” I always have and no one wants to break down and weep and spoil the fun for others, though that has happened as well. Even with the leaks, folks are absorbed in their family life, their children’s needs. Ironically I had the reverse challenge placed before me in my attempts to acquire the services our daughter needed, the schooling, funding, when we desperately needed experts, educators, specialists, bureaucracies to see the “stuff” that was shrouded from our social peers. How odd it all is. But we got there and our daughter’s life is as happy as any of her peers, her typical peers too.

At the author event, I displayed framed samples of our daughter’s collages, which serve as illustrations for my book. Though I have talked for years about our daughter’s artistic ability in this area, here was another surprise for audience members, the sheer sophistication and evident talent inherent in these marvelous collages. One artist attending the event wants to put one of the collages in a prestigious art gallery opening in New York City.

It is a Crazy Quilt – of patches of awesome and patches of Oy Vey, in raising and parenting a special needs child. The parents of these amazing children of difference know that well. Sharing with each other is always easy.


©Jill Edelman, M.S.W., L.C.S.W. 2013

Author Event: Outside My Comfort Zone Again

The Book Event: I have been invited by our town’s library, The Mark Twain Library, in Redding, Connecticut to present an “author event” and signing next week. This is a new kink to my “parenting adult special needs life” that stretches me a bit outside my comfort zone. But as all parents know and special needs parents are experts at, parenting takes you to places that you never planned on visiting. The event is scheduled for May 15 at 7:30 and I have invited my daughter’s wonderful former case manager, Michele Brabant, to be on hand for the nitty gritty questions that only someone expert on qualifications for government services could possibly answer. I will be signing print books and sharing e-book images of our daughter’s wonderful collages in color that serve as illustrations for the print and e-book.

The book’s focus, as many of you already know, is on our family’s journey over two decades toward creating a safe and happy adulthood for our daughter, with specific concentration on the last twelve months of that journey. Now that our daughter is twenty-three and flourishing in her supervised independent adulthood in a town nearby, I can say without reservation, that we have been successful in reaching that goal.

To underscore that point, our daughter is currently texting me with ecstatic descriptions of her trip to Disney World, along with two staff and her apartment mate. “I don’t want to leave on Friday.” Oh well, even special needs vacations have to come to an end. But what a time she is having, using money that both ladies saved from government funding and supplemented with family contributions for airfare.

So while our daughter learns everything Disney, including the art of animation, I am faltering and fumbling with a new task, how to condense a 550-page book into a short reading and a talk.

Hope you can make it on May 15 and please alert friends in the special needs world who might want to hear how our road to success was achieved.

In another wonderful recognition of the book, the Pegasus Horse Show has invited me to do a book signing on May 18 at the Brewster state of the campus while our daughter and others show their skills in the arena.

©Jill Edelman, M.S.W., L.C.S.W. 2013


News Update on Parenting Adult Special Needs: 4-30-13

Two Years Have Past: Two years ago today I wrote this post:

Becoming a Consumer: 4-30-11
Admission Paperwork: On Friday, May 6th, our daughter becomes a client of her service agency. The other mother and I are instructed to bring psychological evaluations, documentation of all income sources such as SSI and SSA; Medicaid and social security cards; guardianship documents; recent medical exams; lists of medications and doctors information to a meeting…

This past Saturday night, April 27, 2013 that same service agency, Ability Beyond Disability, had its 60-year Gala celebration at the Amber Room in Danbury, Connecticut and our daughter with her boyfriend, our son with his boyfriend, a residential staffer who provides the maternal heart of our daughter’s new home, and others who were instrumental in getting our daughter to this place of adulthood, shared in the celebration as our guests. A year and eight months have passed since our daughter moved into her apartment on August 1, 2011 and launched her full-time “adulthood” outside the immediate purview of her parents’ scrutiny. This journey, detailed in my book, “This Crazy Quilt: Parenting Adult Special Needs One Day At A Time,” keeps on going, and thankfully, successfully. She is happy, flourishing and in love.

Counting Our Blessings: There is more great news. Our daughter keeps maturing, harvesting the fruits of years of guidance and socialization garnered from her schools, her family, and her innate abilities. She is better organized, reads remarkably well, is more confident and socially appropriate and most important, happier. Her weekly schedule includes volunteer work in three settings, all animal related, and two days’ attendance at DSO, the social programing component that the agency provides at their Headquarters which includes the book club our daughter introduced almost a year ago. She has swim practice weekly in preparation for the aquatic competition of Special Olympics this June. Her weekend is busy with her riding class at Pegasus, the therapeutic equestrian program in Brewster, New York, and she maintains a sturdy exercise regimen throughout the week. She has lost over twenty pounds since her return two years this June from her boarding school, and is proud of it. Healthy eating, exercise, the usual requirements for weight loss, with close monitoring by residential staff were the ingredients; a fairly pain free process for our daughter with little pressure, just committed staff totally on board regarding meal and snack choices. And, this Sunday our daughter, two staff and her apartment-mate fly to Disney World, a five-day trip funded by careful budgeting and saving from their entitlements with assists from each of their families to cover airfare.

Our Time Together: Our daughter and I have a regular date each week to go to lunch. She is still the funniest kid on the block, so we gab and giggle about pop stars, food, clothes, movies, friends and animals. Our family is on a waiting list for a Portuguese Water Dog puppy, since the loss of our Waggy on December 12, 2012 has left a crevice of pain in Mom’s heart and a mutual yearning for a new pooch in our lives. Last week she and I saw the Broadway show Matilda, seated in the third row on the aisle while the cast ran up and down the aisle brushing against us with unexpected bursts of air, loud voices and energy, something our daughter could not have tolerated even a year ago.

My Mom: This summer, we have plans to travel both north and south as a family. These “disruptions” in our daughter’s weekly schedule can produce some anxiety in our daughter but she has chosen to participate in both events, one to her former boarding school for their Gala night. I was surprised that she wanted to attend as she often views long car rides as equally unappealing as upsetting her usual routine. But she is maturing and becoming more resilient every day.

No longer does she organize our time together around shopping, a motif she had incorporated since early childhood. Now we can just visit. The staff shop with her. No longer do I push myself to do more than she is asking for, out of guilt or confusion (at least I am better at this if not totally there). When she needs me, she lets me know it. I am trying to fix my boundaries more tightly around reality, not projection, confusion or ambivalence. I think about what I needed from my mom when I was 23 and how often I wanted to spend time with her. And frankly I am grateful and surprised that my daughter seems actually desirous of my company, perhaps even a bit more than I was of my mom’s at her age; at least as I recall from the vantage point of history.

Boundaries: Throughout the year I have been working hard on establishing these boundaries as the mom of a special needs adult who lives just nine miles from her daughter’s home. But there does remain some ambiguity: a big part of me would love to believe that the “parental eye” is no longer required and I can merrily go about my life worry free, just “hanging out” with our daughter without the intensity and scrutiny of the last 23 years. You know, if they don’t call, assume all is fine. But then when I do use that eye to examine our daughter’s world, stuff pops up and a voice whispers in my ear, don’t get lazy. Over a month ago our daughter attended a dance wearing a formal strapless gown, which she and I had purchased together in a poorly lit local dress shop. When I came by to take photos prior to the event (upon invitation of the staff), I saw a brown spot on my daughter’s skin in an area below her armpit Would someone else have seen that? I think so, but I rushed to make the calls and send out the emails to make sure this spot was looked at immediately. Fortunately it was just hyper pigmentation from an irritation. Would this investigation have happened as quickly without my eye? What if it were something serious? Our daughter didn’t seem to notice it or at least mention it.

Little Glitches: These little glitches keep reminding me of that essential question: who will replace my eye, my scrutiny, my passion when I am gone? There are other examples: one evening around dinnertime we received a call that our daughter (sound familiar, this is her second visit to the ER in six months) was on her way to the emergency room in an ambulance. Staff said she appeared a little off at dinner, complained of dizziness and of not being able to focus her eyes and immediately the staff called the agency nurse who advised them to go by ambulance to the ER in case some grave “medical event” was unfolding. Staff as always was on the ball, wasting no time ensuring that our daughter received medical attention.

At the ER her vitals were fine and after extensive parental and staff questioning (the ER doctor never showed up to examine her) with our daughter venting and crying, we traced the likely cause to an increase in her Focalin medication some weeks earlier that was both interrupting her sleep and giving her that speedy dizzy feeling. Could staff alone have vetted all the possibilities with our daughter as quickly as a mom and dad who know her for 23 years? And would staff have pushed as hard for the adjusted medication script to be rewritten asap, a bureaucratic process that involved the agency’s prescribing psychiatrist to get on board and even with our push, took five days (though we immediately were able to reduce the culprit, the afternoon medication) to finalize the process? Two years ago this week we signed a contract which made our daughter a consumer of an agency that has proven to be trustworthy and highly professional, an agency I respect for their high standards and dedication. Yet all agencies have their protocols that at times can feel cumbersome and even a bit worrisome.

Falling Off The Horse: Earlier this month, one day prior to our two-week vacation to Morocco, my husband and I received a call that our daughter had fallen off the horse she was riding at her Pegasus Saturday morning class, bracing her fall with the palms of her hands. She seemed fine but complained of pain in her left wrist so staff took her to the local Emergency Care center (eschewing the ER after experiencing the long delay the previous month) and I met them there. The physician on call did not inspire great confidence, when after a physical examination, and an x-ray of our daughter’s wrist, refused to x-ray her arm, claiming it was clearly just a sprain. Our daughter left the building with one of those protective braces that do nothing. The staff and I both were appalled and I followed up with an email to all staff (nursing has to be notified in order to accomplish anything health or medically related) that our daughter needed to see a wrist specialist.

The next day I was on a plane to Casablanca. But the staff, the agency, did all the right things. No it wasn’t just a sprain, it was a fracture, requiring two weeks in a purple cast, no showers, no riding, no swimming. And no mom on board. But the agency worked its magic. Our daughter’s insurance is Medicaid, and the wrist specialists who take Medicaid were unable to see her for four weeks. I knew none of this until I returned (only receiving emails from our daughter and staff that detailed that she did indeed get a cast and it was indeed a fracture) but the ABD staff, faced with this delay, made calls to our daughter’s primary care physician who arranged for an orthopedist to see our daughter within a day. No mom could have done a better job!

Self-Advocacy: Special needs adults need advocates and close and careful monitoring. They are less equipped to advocate for themselves. Can you teach advocacy? Yes. Our daughter knows to examine herself and I and staff will explain to her the value in noticing pigment changes to her skin (she had a full dermatological check up) and the necessity of reporting them to staff. To some degree we can and must teach self-advocacy to our special needs children. All her educational institutions worked hard to drive that point home to their students. In fact one of the most fundamental goals of good parenting is to teach, model and inspire our children to develop the skills to identify their needs, and to follow up by seeking out the proper resources that will facilitate meeting those needs; self-advocating is a lifelong task. With an adult child with cognitive and other challenges, even in the case of someone like our very verbal daughter who can at times advocate for herself, you cannot assume that she would insist on seeing a wrist specialist or understand that a brown spot should be looked at by the nurse or question the impact of a medication on an increased restlessness at night. And though we have the services of an outstanding provider agency, they are still an agency with staff changes, adherence to strict procedures further complicated by our daughter’s reliance on government insurance funding. So who can I turn to for that extra eye, the lifetime knowledge base, to fill that spot in the decades to come?

Every Parent’s Question: Is it a burden to ask the sibling, the cousin, the incoming generation of adults to fill that slot? Yes. But there really is no other choice. The personal piece, the family member who carries the special needs adult’s history in their back pocket, who can provide that consistency, the lifelong data base, the shared DNA commitment, is essential even with the services of an agency with the professional expertise, skill and dedication of Ability Beyond Disability. The agency knows this too and welcomes the family involvement in a multiplicity of areas. As the coordinator of our daughter’s residential program reminds, “You are the mom.”

Life is so long, hopefully, and our daughter will long outlive us. We parents of special needs do the best we can to put in place a hierarchy of overseers, both personal and professional, to ensure that our children’s lives remain as good in quality as they are long in quantity.

Our daughter sure is living the dream, happy, maturing, loved and self-loving. Pretty darn good. Fingers crossed, now and always.

(BTW, do I worry as much about our 26-year-old son? Yes. Do I scrutinize him as much when I see him? Yes. What’s the difference here? Certainly not me; I am the constant, the same worrywart of a mom. It’s them, very different children with a very different set of life skills. Makes the whole difference. One needs a scaffolding of care put in place by others, forever. The other constructs his own scaffolding of self-care, forever.)

©Jill Edelman, M.S.W., L.C.S.W. 2013

A Puppy Passes & Newtown Loses Twenty Angels and Its Heart: 1/17/13

Too Much Sadness: Since my last post about our daughter’s adult special needs life, much has transpired for all Americans. A little more than a week after my posting, Newtown, Connecticut, a town adjacent to our own, became the target of a massacre unlike any our country has ever known. An intentional murder of twenty six-year-old and seven-year-old children and six of their educators, all of whom died from multiple gun wounds inflicted by one young male who lived amongst them, pushed a gruesome new reality into all our lives, just eleven days short of Christmas. Lock down occurred in the area schools and in my daughter’s apartment as well, twice, that day and several days later when a “suspicious” figure dressed in black lurked near one of the schools in her town. The agency, Ability Beyond Disability, applies the same protocol as the area schools for all its consumers.

Waggy Dies: On 12/12/12/, two days prior to the shootings at the Newtown elementary school, known as Sandy Hook, at the age of thirteen and one half years, our daughter’s Portuguese Water Dog, Waggy, was put down, a decision resulting from a devastating deterioration in the dog’s ability to walk and ultimately a seizure indicating other processes were at work. The two events, one the natural and humane course of action when an older dog is suffering and the other inhumane, unnatural and horrific, melded together in our family’s brain as a very sad time. Since Waggy no longer lived with our daughter, I informed her three days prior that our pooch went to the Vet Emergency (ironically in Newtown) and was really struggling. Since then, she texted frequently with her concerns: “How is Waggy doing?”

A Social Link: Almost fourteen years ago, in what seems like yesterday and also another life, our daughter’s world was filled with canine preoccupations. Dog-less in a house with two kitties and an ever-changing array of rodents, our daughter spent hours pouring through dog books, learning breed characteristics and watching dog competitions. Out in the world, she had the over-focused, slightly inappropriate tendency to quiz strangers on the breed of their pooch that she had exhibited earlier in the horsey world. The connective tissue between her passion for all things dog and the world of social interaction with others seemed clear and necessary to build upon. For her, it wasn’t that the dog was a soothing presence; not truly a “therapy dog” in the traditional sense. It was more that her questioning mind and scientific interest in canines linked her to and built up her strength socializing with her fellow humans. It was a kind of calling card that permits entry.

In-House Dog Lab: Naturally there was some family resistance (no names mentioned) to obtaining yet another animal but I was convinced that our daughter would benefit from having her own in-house dog lab, a canine to study, hopefully love and possibly train. Never having owned my own pooch, but related to extended family where everyone in their adulthood had/has at least one and often two dogs, I felt I could add this responsibility to my life as easily as my sisters, cousins and friends did. I was right. We chose the PWD breed because our friends owned two and characterized the dogs as “never leaving your side and following you everywhere.” The breed was also known to be working with other special needs children. That totally worked for me. I love a warm companion and Waggy was just that for all her doggy life. My buddy.

Poor Dog: For our daughter and for Waggy, their relationship was more complicated. The empathy factor was hard to teach and though our daughter was chronologically nine when she became a dog owner, her interactions with the pooch were more in the age range of two- or three-year-old children. The iconic example: dragging the dog on the leash into the line of the invisible fence, over and over again, the dog’s head gyrating from the shocks, heartbreaking to witness. No manner of explanation ever prevailed to modify that behavior. Her interests were less in cuddling with a cuddly dog than in shopping for dog toys, leashes and dog training videos. But out in the social world, the pride our daughter felt walking this stunning animal on a leash through the parks and streets was palpable. Her use of language increased exponentially and the bridge that I hoped would be built to others unfolded before my eyes. YES!

Not Always What It Seems: My husband and son knew that Waggy’s early years were not easy. Others idealized our daughter’s feeling for her dog but we knew. The same difficulties that our daughter had in seeing the world through the eyes of others, which normally triggers empathy and accommodation to those not occupying your body, were manifold when the “other” has no language and can only bark or bite. And the spin-off from the treatment our dog often received affected our son, who was sensitive to all suffering, particularly in the animal world. This was very hard to watch and not always possible to prevent. The ordeal of seeing a child you love feel powerless because of the actions of another child that you love is a common agony of parents of special needs children and for me, the most excruciating of all. So here we are now, thirteen years hence, our daughter far more socialized, civilized and capable of empathy, and that valiant pooch is gone.

Biased? Our daughter knew that Waggy was an older dog. She had seen her puppy go through a leg amputation four years earlier and though she didn’t live with her anymore (and in fact only a few months a year once she attended boarding school), her skills as a superior observer, even in brief visits home, revealed to her that Waggy was aging. The morning we decided to put her down (I can’t find a better more sparing phrase), I struggled with whether our daughter should be pulled out of her DSO (Day Services Option) program to be given the option to say goodbye. I consulted her staff, my husband and our son. It was one of the harder elements of the loss. Who makes these decisions for others, for a twenty three year old special needs daughter, an adult? Was I biased by not having the staff offer her the option of seeing her pup one more time, something that we all knew would unravel her for the rest of the day? Was I denying her the dignity and respect that I would offer her brother, who was in New York City at work and was comfortable remaining there? Or should we wait until the deed was done? The dog had been up all night wailing in fear and confusion. How could waiting be a good option for her? And frankly, for me? Another night of witnessing my dear Ms. Wags in such a state or leaving her with the vet, even more unthinkable, to suffer in a cage alone – nope, not an option. I wanted to do this and do it “now.”

The “No Good Answer” Answer: How often are decisions based on opinion, gut, exhaustion and the simply fact that there is “no good answer?” Absolutes are not always available, outcomes not clear, so we just guess the best we can based upon what we know from previous experiences. And what we know about our daughter is that events can become dramas, spun out of control and spilling into other aspects of her life that might cause more damage than necessary. Social crashes, such as an unfortunate clash with a DSO group member or someone else because our daughter perceived that she wasn’t given her space to grieve, can lead to days of social and emotional clean up. And sometimes when you give our daughter choices, her own ambivalence and uncertainty overwhelm her and lead to perseverating behaviors that find no solutions no matter how many are offered.

Don’t Tempt Fate: So the consensus was not to tempt fate, to allow our Waggy to depart and wait until our daughter had completed the days’ programming, away from groups of peers, to tell her and take the risk that should she have feelings about not being consulted, we would deal with them. Then there was the question of whether I should be at her apartment to present the news. Reassuringly the staff person scheduled to be on at the end of her programming day is the heart and soul of our daughter’s adult residential life. After I said goodbye to our sweet Wags, I went home to grieve and work. Later I spoke to the aforementioned staff whose twelve-year-old golden had been put down two months earlier. She had shared her grief openly with our deeply consoling daughter and clearly they had deepened their bond through the process. The staff clearly wanted to handle this with our daughter and I knew she would be wonderful. So I bit the bullet and let her do it. We agreed on a plan. When our daughter returned to her apartment, I called her and she immediately asked about Waggy. The moment the words came out of my mouth, she burst into sobs, was overcome, and the staff took the phone to tell me she would call me later. How did I feel? Well, this is always the slippery slope with this adult special needs parenting life. I felt I had passed this job onto someone who wanted it. And that my daughter would benefit. And that is always a bit sad.

The Climate of Grief: Two days later, Sandy Hook became a tragic household name. And I couldn’t figure out from that point on, what and who I was grieving for because though one loss was personal and natural, and the other devastating and intolerable, loss flows through connected streams and enters into a common river of grief. I have been a couples’ therapist to many over the years who reside in neighboring Newtown. I sent out emails to all to find out if they had any losses. I knew that most no longer had very young children. Like everyone else in America, and many around the world, I stood frozen for hours in front of the T.V. and sent out messages to colleagues in Newtown to offer assistance. In another realm entirely, our daughter was being consoled by all on her puppy loss and was handling herself well. By Monday, (three days after the shootings) I picked her up at her apartment to spend our typical time together lunching and shopping. Her day staff was close to one of the families who lost a six-year-old and was attending a shiva (making a condolence call) to the family that very evening. Her face was a map of tears and we spent more time than we should have, sharing feelings and discussing details while my daughter walked in and out of the room, getting ready to go with me to lunch.

Bad Mom: If my memory serves, in the car she said she didn’t want to hear about all that sadness anymore. But when we got to Target (ironic name here) I immediately spotted the Newtown families who with their children of all ages – only Newtown schools were closed that Monday – looked dazed as they wandered through the aisles, some of them teens wearing sweat shirts with Newtown High School printed on the front, all trying to avail themselves and their children of some small measure of normality in the face of the horror that they and their town would forever be branded by. Finally, bumping into acquaintances, while my daughter toured the store in search of a variety of items, I began to have that exchange that serves as a temporary port of call from the loneliness of carrying the weighty emotional pain inside us. At that moment, my daughter returned to my side, lingered then wandered away. At check-out, I ran into a close friend who has young children, and once again the ritual of emotional exchange ensued. By the time we walked out of the store, my daughter was miserable. “I’m sick of this sadness stuff.” And I knew that once again I was the “bad mom.” I dropped her off with her staff feeling like sh-t. Will I ever learn? I had indulged my need at her expense. Again! I didn’t honor her wishes. And the added sting of guilt is that I am often accused of appearing to find pleasure in the sharing of pain. So though others may say that this was different, after all, it was Newtown, in some ways for me it tapped a familiar flaw that I wasn’t happy to see revealed again.

Life Continues: But if ever they were a time when personal preoccupations seemed trivial, this was it. I did visit Sandy Hook a few days later. And heard of more friends who were close to families of loss. Of a grandparent who had been our children’s wood shop teacher who lost his granddaughter. Of the psychologist who had worked for a short time in our school system. This was not only close to home but in our hometown. But no matter, little children, all children are our children. If we as a people truly embraced that belief, we would be a better world. Of that I am sure.

A Different Heart: Back to my small world, according to her staff, our daughter quickly recovered from the momentary setback of the time spent at Target with mom. Her life at her CRS (Continuous Residential Support) is thriving even with another staff change and a review of her medication (apparently the positive effect of her low dose of Focalin has waned) is looming. But despite these challenges, our daughter continues to thrive, loving her three volunteer jobs and the many social activities that are abundant in her life. She rides with Pegasus, works out at the Park and Rec, is learning duck pin bowling (never could handle the regular version, small hands), makes jewelry with her Sphere group each week, went to the Museum of Natural History in NYC with her dad and still has a friend boy whom she converses with daily and sees occasionally. And she finds ways to honor her Waggy that match her style of emotional experience. The first few days after the loss, she would say to me, “I am still feeling sad.”

Last night I learned that as part of a Valentine project designed by a creative clever staff member the apartment-mates made small paper hearts each with names on them to be assembled together as a wall design. One of the hearts has Waggy’s name on it. As the project coordinator wisely said to me, “(our daughter) has her own way of experiencing emotion.” She is not consumed with her loss nor seeming to be openly grieving. But every so often the old spark of acquisitive inclination gleams in her eye. A few days after Waggy’s death, she text me that she had a dream that we got a PWD puppy who was black with white polka dots and a white chest. Hint Hint. On Facebook she rapid fired a question about a post of mine that vaguely alluded to a spot in my heart for another pooch. If she were still residing with us and this remained her bridge to the outside world, that puppy would be on order in a nanosecond. As it turns out, the price has gone up (maybe because of Bo Obama but it was never an inexpensive breed) and the waiting list from our breeder is over a year and includes a hefty deposit. And life is different now. I am not the primary engine of my daughter’s social world, at all. I am not even a wheel. I am just simply mom. Whew!

Newtown: Loss is in our backyard. Our community and state are consumed with the green ribbon imagery of Sandy Hook. Rightfully so, though tough on the inhabitants of Newtown. To any who are living this loss, my heart is with you and my hope, along with so many, that these losses will serve to create gains in the quality of life for all our children, and inspire confidence in families that someday they can send their children out into the world knowing for sure that they will come home again. As a special needs parent that worry held my heart for decades. And yet I found the means to empower myself, with the support of many others, to reduce that worry. But for the families of Sandy Hook, represented in the hearts and minds of every parent of school age children everywhere, that journey is just beginning. Fingers crossed you will all get there too.

©Jill Edelman, M.S.W., L.C.S.W. 2013



Special Needs Elf & A Fire Disaster Averted: 12-6-12

An Ashy Pall: My daughter allocated Monday as her Christmas shopping with mom day. I showed up at the apartment almost on time and saw that the staff mini-van had not returned from dropping the apartment-mate at the DSO. Since I am on the lease and have the key, I entered the apartment. Just as I noticed the fire extinguisher on the dining area table I received a text from my daughter: “We are late, the lamp went on fire.” Okay. While waiting I scanned the rooms, seeing no evidence of a singe or a burn. Though there was a scent of something in the air, somehow my normally acute olfactory apparatus did not register alarm. But when the daytime staffer and my daughter arrived and showed me the burned remains of a table lamp that lay outside on the brick pavement of the patio, covered in fire extinguisher goop, I realized this was an electrical fire and potential disaster. As the staffer tells the story, quite energetically: she watched as the lamp exploded in flames 3 inches from the living room curtains, grabbed the lamp, pulled it out of the wall without touching the outlet and threw it outside on the patio. The quick-witted staffer then grabbed the extinguisher and saturated the lamp with streams of that white grey weird stuff that casts such an ashy pall over its targets.

Smart Staff, Prepped Clients: So many variables were in my daughter’s favor here. It was morning, the girls were up and dressed, the night staff was still there and the daytime staff had just arrived. The daytime staffer removed the lamp before the curtains could flame up and the nighttime staffer led the well-trained apartment-mates out the door. Apparently the ladies, who had a reputation of sleeping through fire alarm drills, performed beautifully. So, you may ask, what state was my daughter in? She said she was anxious but she appeared fairly calm, not shaken. The day time staffer was more overtly impacted and was still in amazement at the sheer speed of all that went down; the lamp bursting into flames (wiring was defective and the bulb ignited), her quick response and the sheer gravity of the situation. A disaster averted. She had entered that sphere of human experience where one’s own courage and good decision-making skill seem to birth forth without conscious choice and save the day. Wow. I could tell she was both proud of herself and awed by the process that led to her heroic behavior. She thought nothing of the possible injury to herself when she grabbed the lamp, only that she had to prevent the curtains from being ignited. I loved watching her take pride in herself – in her early twenties and already saving lives.

Curtains: I have a thing about curtains. I don’t like them and avoid them as much as possible. I like light. I dislike dust and cat hairs clinging to fabric surfaces and I know that curtains catch fire all the time, though perhaps most fabrics have been treated with some flame retardant. I also don’t like cheap lamps. Years ago my sister’s apartment caught on fire because of the interaction of a halogen bulb and some cartons getting too close in a closet. The apartment was uninhabitable, precious memorabilia was destroyed and my sister and her family were uprooted. But no one died. When it was suggested that curtains be hung in the girls’ apartment living room, to pull together the look, though there were blinds for privacy and light, I agreed. But when we talked about the possibility of adding them to my daughter’s bedroom (blinds are there, too) I said no. The lamp was one of a pair that apparently was bought at Lowe’s. Ability Beyond Disability did all the right things after the potential fire. The town fire department came and inspected the entire apartment that afternoon, checked all lamps and outlets and reassured staff that no other lamp or outlet represented a threat. But ABD took the twin lamp out, filed a complaint with Lowe’s and brought in replacements. Once burned, don’t touch that flame again. I haven’t seen the new purchases yet.

Omens? Sh-t. There is a backstory to this tale. In 2003, the first summer our daughter, then thirteen, attended sleep away camp, my husband and I purchased a studio apartment in a condominium complex in a neighboring town as a possible locale where she could live and walk to most services and entertainment. This was something I felt compelled to do with my extra time and super high anxiety now that we had asked her to take a giant leap toward her adult independence by sleeping somewhere eight hours away for five weeks with strangers. Interest rates were low (Ha, in retrospect) and I needed to bind my anxiety which had been stirred to super high levels by this first big separation (and guilt too) while simultaneously investing in our daughter’s future. My idea was that we could sell the place at a profit someday and use the funds to purchase a permanent home for our daughter. Needless to say, in this economy, no big profits are in sight but the apartment has been continuously rented, with only a three-month lull, since purchase. In the winter of 2009, my tenant of six years went to live with his daughter. Our apartment stood empty so I arranged for a paint job and general facelift with a hopeful eye toward selling it, bad timing, 2009!

One day I drove over to see how the new paint job was proceeding and saw that the entrance of the adjoining building was surrounded by yellow police tape. And that the windows were burned out and debris was littered on the small lawn outside the entrance. Fire had engulfed the duplex apartment of a special needs couple and killed them both. I still feel like crying as I type these words. This was a couple in their fifties, newly engaged and living on their own, who had met through their program and were beloved in the community. An investigation revealed the probability that there was a malfunction of a microwave (it was an electrical fire). At that point I was so scared that I wanted to sell our apartment, which I tried to do, and somehow make sure that never ever would our daughter suffer such a fate. The fire and their deaths had nothing to do with special needs. It was one of those “freak accidents.” Yet, I will never forget this tragedy and its emotional proximity to the vulnerability that I already felt about our daughter’s future. Fires kill and though ABD has intensive fire safety protocols, fire alarms and all one could wish for, this was all too close to home.

Special Needs Elf: Whatever my associations to that fire incident, my daughter seemed to have none of her own, though she did know the story of that unfortunate couple. I didn’t mention it. Not relevant. So off we go to the mall, this little 4’8” Santa elf strutting along with her shopping list in hand, white lined paper with orange marker indicating the names and planned purchases for family members. She had done her research online and knew just which stores and what possible items to check out for each party. LL Bean was the venue targeted for Dad, J.Crew for her brother, Hallmark for her apartment-mate and American Eagle for her cousin. She was superbly organized and focused. Unbelievable. At one point I left her alone in J.Crew, where she was searching through the displays, to run out to the car and unload some of the packages from the day’s haul. Upon my return I found her being waited on by a young man and woman, whom she had sent on a mission to find a blue shirt that she had seen online. We never found it but she was undaunted and not only found a shirt she liked for her brother, but a sweater as well. Her taste and shopping acumen are on a very high level and her uncanny sense of what people might like pretty close to perfect. As all parents of our special offspring know, the talents and skills of their community of difference range all over the place. Here our daughter, who still can’t accurately articulate the price of any of these items, could be a personal shopper for someone. Outrageous!

Lunch and Goodbye: We did it all and ended the morning at The Cheesecake Factory ordering from the Skinnylicious menu, meeting all deadlines and targeted gifting goals. After we ordered, I said that I was heading to the ladies room. My daughter decided she had to go, too. I took my purse but felt okay leaving the couple packages at the table. This may sound strange but life in our area is sort of like this. At any rate, when we returned to the table, I saw that our daughter had left her purse there as well. So I told her that it was best to bring it with her at all times. Then something happened. Her facial expression changed, the tone of her voice shifted from upbeat to downbeat, and a look of suffering passed across her eyes: “I don’t know where my head is. I have had a hard day with the fire…” and in a snap, the reality of her excellent focus and accomplishments, our mutual delight in meeting our deadlines vanished from awareness and my Santa Elf, who only a moment ago appeared satisfied and buoyant, presented herself as someone disorganized and confused because of the morning’s events. I have seen this shift before. I am not saying that the flaming lamp incident wasn’t scary or didn’t impact her. But frankly, since she saw immediately that staff was in control, I don’t think it impacted her that much. What did impact her was my pointing out that she left her purse at the table, which triggered something else. Something she had to explain, that she perceived as something that she didn’t do right. I felt terrible and reminded her of all she had accomplished, how focused and successful she was, but she continued on her track of explanation. I backed off and just reflected back to her, yes this was such a tough morning…no wonder you are a bit distracted. But she wasn’t distracted at all. Leaving her purse wasn’t due to distraction, not really. It was just a discipline that she needs to be reminded of, never leave your purse anywhere. That’s what every mother says to every daughter. Or maybe I am wrong, and at that moment she was distracted. But not the whole morning. I guess that I just felt bad that something I did added some shadow to a truly perfect morning and a job well done. Oh Motherhood, thy other name is guilt.

P.S. That mood fleeted fairly shortly after it arrived and the young lady I delivered to her program one half hour later, was a pretty happy camper.

©Jill Edelman, M.S.W., L.C.S.W., 2012


What Should I Wish For? Update on Adult Special Needs

Hurricane Sandy: Strange how the Halloween season has become a natural disaster magnet for the Northeast. Fortunately, our daughter’s Halloween festivities were celebrated prior to Sandy’s hit. She dressed as Dorothy in The Wizard of Oz, with a toy Toto in a basket and a brown wig perched atop her head, and attended two parties. Sunday night all the talk was of the monster storm and how it would crush our roofs and flood our basements.

At 4:30 p.m. Monday afternoon the power died at our house as it had twelve months earlier, and for millions of other households as well up and down the Middle Atlantic and New England coastal regions. In the days and weeks that followed Sandy’s descent, aged uprooted trees, as if downed by a stampede of dinosaurs, lay strewn about the area eerily evoking the look of a primeval forest. But our daughter and her staff were well prepared. They road out the most violent winds in the basement, and then huddled together in sleeping bags on the living room floor to ensure that staff was literally lying next to both ladies through the first powerless night. Our daughter claims she barely slept. Staff state otherwise. By the third night, their power returned. For most of us, no such luck. Yet, we were still the lucky ones, as everyone who watches the news knows. Those whose homes, businesses and person remained intact were the lucky ones.

Fear-less: Yes, I had no fear as to how our daughter would fare, in spite of the dire warnings of pending devastation. Twelve months and a day post the nor’easter that pelted Halloween out of the area in 2011, and I had evolved into a seasoned mom of an independent living special needs daughter, having learned over time, that my daughter is under the protective care of real pros.

Greater Than Expectations: Her life is flourishing beyond expectation. Naturally and by definition, patterns of special needs challenges remain. In the last two months, our daughter has had a couple of social glitches with fellow special needs adults, one a former schoolmate and unfriended Facebook friend, the other a member of a social group. The pattern of disharmony is characteristic for our daughter: anger and irritation with a breakdown to tears, that someone is not giving her space. In one case, a young man keeps urging her to forgive him for past behaviors and allow him back into her Facebook world. She refuses. The other disharmony involves a female acquaintance that cannot inhibit repetitive questioning while our daughter cannot fathom that her friend’s behavior is not intentional or personal but a product of her disability. A meeting with staff and the young lady in question produces the following text: “I was wrong mom. I misunderstood.” In my experience as a mother/observer these clashes are typical of the special needs community and usually require skillful intervention.

Personal Energy Economy: The staff at Ability Beyond Disability move to action as soon as our daughter registers her distress to them or through their own observation, sometimes with me as the conduit but more usually not. I was surprised when staff informed me that our daughter exchanged one of her days at her DSO (Day Services Option) social group for another weekday, to give the apartment-mates more time apart. They spend weekends together and most evenings and had a common day at the DSO as well. Frankly I did not request too many details, trusting that whatever the cause, others took care of it. But I did check in with our daughter to make sure she was comfortable with the outcome. Wow, I didn’t even know there was an issue. My reduced need to expend personal energy to repair, prevent or pick up after some daughterly need is tangible, almost quantifiable and after 23 years, liberating.

Busy Lady: My life as a special needs mom has settled into a peaceful predictable and welcomed routine. I see our daughter every Monday (a shift from Wednesday due to her schedule change) when we go out to lunch and shop. Her weekends are very busy but often she will catch up with her dad for a visit to a museum or a meal. Weekends to Maine, local family parties, special dates to theater or other outings supply additional opportunities to “hang out.” We text, as she is a great texter, and talk on the phone when I tire of her texting. She texts with her brother, his friends, her dad and heaven knows who else. She communicates with a pretty wide circle on Facebook, chatting or emailing others. She stays up to date with just about everyone, and takes the pulse of the big stories, such as the election (she voted) while retaining her expertise in celebrity news matters, what movies are out and the latest exhibits at the Yale New Haven Art Museum, The Peabody Museum and other area centers of art and science. Her range of interest inspires the staff to seek out destinations that included a visit to meet a white wolf in residence at a nearby conservancy and the Military Museum in Danbury replete in WW II tanks and Nazi helmets. She wants to take her dad there.

Staff Changes: Staff changes occur fairly regularly, not the senior staffers, but the younger recent college grads that are using the job as a stepping-stone to their next post. (Usually these junior staffers are either the same age as their client or, now that our daughter has turned 23 years of age, even younger by a year.) Most recently the vocational life skills person gave a two-week notice to return to school. She was excellent and had worked with our daughter for over a year, teaching her the skills required for shining boots at Pegasus, socializing kittens and cleaning litter boxes at The Complete Cat Clinic, staying focused and getting out on time to her volunteer jobs, no small challenge. In fact focus, punctuality and keeping on task, are the essential building blocks for our daughter’s vocational future. The staffer was “the perfect person for the job,” Dr. Eisen, the veterinarian owner of the clinic, informed me on my visit there for our kitty’s checkup. So good that the dear Dr. Eisen feared she would be irreplaceable. But now they have a replacement and fingers crossed, she will meet the same high standards of her predecessor. When the first vocational staffer resigned after a month’s work, over a year ago, I was distraught. She was good too. What a difference a year makes.

Paid Work: To date our daughter does not receive wages for her work. I am not sure how the determination of eligibility for a wage-earning job will be made, when and in what setting. She may not be a candidate for stocking shelves at a supermarket or even a large pet store chain. She thrives in more intimate settings with animals. All things numerical fall into the area of greatest challenge for our daughter, which may account for her seeming lack of interest in earning any income, so far. But perhaps I am ignorant of her feelings on the subject. Her apartment-mate does earn some wages and takes pride in doing so and that might influence our daughter’s attitude. Certainly paid work for the disabled adult is hard to come by in our economy. In fact, it is the greatest challenge for many agencies and their clients who are ready and eager to work for a wage.

What Should I Wish For Here: Though the entitlement system wants recipients to become as financially independent as possible, the options shrink in concert with the economic realities. The politics of entitlement remain headline news, but the day-to-day facts rarely weigh in usefully or accurately. It is sixteen plus months since our daughter joined the ranks of the disabled adult; a novitiate still with decades of likely dependency ahead of her. But who can say? Maybe someday she will earn enough money to make a dent in her living expenses, money that will be immediately deducted from her entitlements, if they are still in place.

What should I wish for here? That our daughter successfully develop the requisite skills to earn some income? Or stay within perhaps the safer confines of full dependency and disability. The government will be monitoring these efforts to transform our daughter into a wage earner. That’s part of the deal. Ability Beyond Disability has to prove that in fact they are doing the training to bring her to a greater level of independence. The Connecticut Department of Developmental Services has their yearly reviews, as does Social Security Disability (she was shifted from SSI to SSD when her dad turned 66). Bad things can happen. Fingers are crossed and vigilant watchfulness in gear but complex bureaucracies are often immune to even the most ferocious parental oversight.

Still Vigilant: Parenting means never letting your guard down entirely. And special needs parenting even more so. When staff emailed a plan to take our daughter and her apartment-mate to see the Christmas tree at Rockefeller Plaza, view the windows at Macy’s and stroll Fifth Avenue on a December Saturday, I immediately felt juices of fear flowing through my intestinal cavity: “what if” our daughter gets separated from the staff in the hordes of holiday shoppers? So I sent back a “wonderful outing” to reply all and then an individual email to the person in charge asking for the “safety protocol” information. Will they be insulted? I don’t think so. I just need to know and I do have a suggestion. What is the expectation? Will she be told to use her cell phone to call the staff if she gets separated? To find a policeman, go into a store? The first and only other time the staff took our daughter to Manhattan, it was a year ago. They had one destination, The Museum of Natural History, and it wasn’t the holiday season. So though I do trust their judgment, I will never stop checking, as long as I can. Hurricane Sandy is one thing. Fifth Avenue at Christmas another entirely.

©Jill Edelman, M.S.W., L.C.S.W. 2012


Shining Boots, Shifting Staff and Book Clubs: 9-25-12

Thirteen Months and Twenty-Four Days: That is how long our daughter has lived in her new home. And today the Ability Beyond Disability team, along with the Connecticut Department of Developmental Services case manager, met with our daughter and her parents for her DDS annual review. The residential coordinator opened up the ceremonies by saying to our daughter, “This meeting is all about you,” and with that announcement, invited her to begin the meeting with a presentation of her recent accomplishments and the goals for the coming year. She did appear a bit subdued, likely nervous speaking to thirteen people, but she perked up by the time the meeting ended. During the hour, her cell phone rang – which she considered an act of rudeness on the part of the caller, despite the fact that it was she who forgot to turn the phone off. Perhaps this attitude was to cover her embarrassment. It was her boyfriend. Somehow she felt as if he should have known that she was otherwise engaged. Special needs are still special needs, even with great progress, which she has certainly made in the last year.

Her View: The accomplishments she cited were weight loss (fifteen pounds), portion control, increased focus and attention on the job and a steady and enjoyable exercise program. What she identified as goals for this next year were continuing to improve in these areas.

Shining Boots and Grooming Kitties: From the team’s perspective, one of the more outstanding accomplishments of the last year has been our daughter’s increased ability to stay focused on tasks both in her volunteer work settings and at home. This was accomplished in part by prescribing Focalin, a medication to enhance concentration and recommended strongly by the behaviorist on the team. By increasing our daughter’s ability to concentrate and complete tasks, the medication has reduced her anxiety as well. “I feel less overwhelmed” is how she described the effect of the pill. I notice that when something does upset her, she is able to let go of it sooner.

Worries No More: Ironically, the vocational component of our daughter’s new life, which initially had worried me most, has turned out to be one of the strongest links in the Agency chain, a chain replete in strong links. Not only is our daughter in two animal care settings, but also ABD started a new collaboration with Pegasus, the therapeutic equestrian program that our daughter so loves. Now, in addition to her weekly riding class, she returns to the Brewster, New York riding complex to work at the Rider’s Closet, founded by Georgina Bloomberg, where donated riding apparel are available for students. Our daughter’s job has been to shine boots and sort through the donated clothes for stains and missing buttons

A Keen Eye for Fluff and Stuff: I heard this from the Pegasus program director; our daughter has become an awesome boot shine. With careful training from her ABD vocational life skills staff and Pegasus she now adds a gleam not only to the eyes of all who know her, but also to their boots. She has whipped through the donated boots in the Rider’s Closet so swiftly and thoroughly that the Pegasus crew had to move her over to spot checking clothes for stains, missed buttons and other unseemly elements, an excellent choice for a girl who can spy the smallest of insects in a bag of rice… and a teeny bit of infinitesimal fluff emerging from an almost new toy elephant. Last week we delivered more than thirty such stuffed souls to Goodwill (“I don’t have enough room for all of them.”) each one scrutinized for an imperfection, a leaky seam, a smudged or tattered limb.

Truly it would be hard to fathom someone more skilled in identifying the smallest of imperfections in a product than our daughter, but who would have thought that this skill could be harnessed as a work-related asset. She was about four when she pointed to the teeny bug in the bag of rice on the shelf of the Middle Eastern store in the next town, and though the owner was appalled, I was awed.

Same Old and Critical: A critical concern that has not abated at all is safety. Our daughter remains at risk in any vehicular situation, negotiating parking lots, street corners, all settings where spatial awareness in a travel environment is required. This skill has remained outside our daughter’s reach, despite years of travel training at her boarding school. I suggested that staff review a comprehensive evaluation completed two years ago by a specialist, which they will do. Also, from my perspective, though our daughter was trained over and over again to stop at crossings and look both ways, integrating what she is seeing – a complex, two- or three-step process that her brain has not incorporated successfully – has eluded her. Alas.

Time, Money and Measurements: Our daughter used to cook, omelets mainly. She could whip a sandwich together in no time and heat up her spaghetti in the microwave, though I would set the time. In boarding school, cooking became a supervised and teacherly event, as it is at her ABD apartment, and over these years our daughter has become increasingly wary and reluctant to take care of her food needs. Staff try to teach her to measure and help prepare components of the meal, a very difficult task for her. She has lost all interest in food preparation, though she remains passionate about eating. Time, money and measurement challenges produce anxiety and as a result become paralyzing entities for our daughter. Here is where one wonders what the fine line is between facilitating learning versus creating learning blocks. Time is less scary. She can read her digital watch and knows that her Focalin is taken at 8 A.M. and 2 P.M. I see more hope for time awareness. But this is where special needs defines a person’s future. If you cannot travel safely, make a meal or pay your bills, can you be safe on your own in the world? Nope, you cannot.

Shifting Staff: Something that I was concerned about and anticipated when Ability started to take over the management of our daughter’s life was the likelihood that staff changes would be a part of the experience as well. In the first couple of weeks after our daughter moved into her apartment the vocational life skills staff person departed unexpectedly. I wrote of this in my post Pregnant, Tired, Fired, No Just Gone. Over a year ago, when we were novices in this “adult special needs” world, that loss scared me and troubled the girls. However, since then, there have been staff changes for reasons such as going to graduate school for one residential staff member; for another, moving up the career ladder. All good reasons and all with sufficient notice. And through these various changes, the ABD team has covered the gaps with familiar faces and seasoned members of the agency. And though the apartment-mates are pretty bonded with their staff, they weather these changes with barely the flutter of an eyelash. Why? For one, there is a solid core group of professional staff that are reliably available and pretty savvy about how to make the young ladies feel safe. Another is the presence of a residential staff member who is mature, mothering and steadfast. And finally, and very significant, both young ladies had been at boarding schools for years prior to their new life and witnessed the comings and goings of staff so that these changes, though individually significant, are in fact familiar and endemic to the system. In both our daughter’s boarding school setting and now with ABD, the changes are handled well by the “governing bodies.” Both young ladies have their families living within a stone’s throw (by car that is) of their apartments, which offers a dependable backup at all times.

Apartment-Mate Absence: Recently I was curious to see how our daughter would feel about a ten-day separation from her apartment-mate. The ladies are very close and bonded. When not together they text and FB each other. But last week the apartment-mate travelled south with her family. Staff reported that our daughter seemed quite content throughout the separation (3 days of it were spent with our family at a reunion in Maine) and apparently relished the one-on-one attention for the seven days she was the solo consumer. Her daily routine remained unchanged, a key ingredient. I did not hear a grumble or groan out of the gal for the duration of their separation. In fact, the two ladies are choosing to spend a bit more time apart during the week by separating out attendance at day service options, apparently both realizing that sometimes too much intimacy can be constricting.

Book Clubs: And finally the book club suggested by our daughter to her day services programmers, not six months ago, is a mainstay of the day program for several of the attendees. And for the mom, the “mother’s group book club” that I have been a member of since our daughter’s first months of life (almost 23 years now) held our September dinner Monday night coincidentally at the same restaurant we attended a year almost to the day when I published my post: All About Me: 9-26-12.

This post described my experience as a parent of a special needs child who month after month, year after year, sat amongst the moms of our daughter’s chronological peers while they chatted about the sports, dances and classes that their children shared in. Most of the women in this group do not subscribe to my blog or read the posts. Only one or two have read last year’s piece. But I am quite sure that all will read my book Parenting Adult Special Needs: One Day At A Time that will be published later this Fall and is an edited version of the collected posts.

These are women whom I treasure and who treasure me. But when you are a member of the parenting special needs club, you make choices about how you share what it’s inside you. And often those choices lean toward protecting that special child, at least from your perspective, from the judgment of others, and protecting yourself from pity. It never seemed tempting to shift the focus of an entire group from their relevant conversations about their normal children, (though it certainly happened at times) about whom they had plenty of concerns, to the uniqueness of my particular situation. For that I turned to my husband, other special needs parents and the individuals in the institutions that supported us through our journey. These women saw me as strong and confident, celebrating our daughter for what she was and not for what she could not do. The truth is much more complicated. But then it always is, whether special needs, typical or flavored with any other complexity.

Last night I had no pain, and perhaps less worry than many of my book club moms, at least about my youngest child. She has for now all that she needs for her young adulthood, and that’s mighty amazing, indeed.

©Jill Edelman, M.S.W., L.C.S.W. 2012

The Red Couch Is A Year Old: 8-9-12

The Red Couch Is A Year Old: The Ability Beyond Disability services manager, mover and shaker of our daughter’s residential component, invited the two moms and the residential staff to lunch to mark a year since the ladies moved into their cozy duplex/CRS (Continuous Residential Support) on August 1 in Ridgefield, Connecticut. The atmosphere and conversation were strikingly different from group exchanges twelve months prior. The three staff and two moms had literally weathered two big power outages, “dramas in the duplex”, a couple of staffing changes and DDS (Department of Developmental Services) challenges to get to the calm and conviviality of the grilled salmon over lettuce luncheon upon which most of us dined. In fact, we were more than halfway through our time together before we actually focused on the two young ladies whose special needs adulthood brought us all together.

Slimming Down and Growing Up: A year ago both moms were in the infancy of building trust in this ABD team that is the vital force and anchor of our girls’ adult lives today. We spoke of that process of trust building at the luncheon. Though the staff are sensitive to the journey, only the other mother and I know how far back trusting challenges date; from the “experts” who we were told to trust, but actually disappointed and hurt us; to the bruises from encounters with school systems and the occasional personal friend whose attitude reflected ignorance or indifference; to the well-meaning souls who just didn’t have sufficient knowledge or expertise. Trust is earned in all relationships, no matter the reputation of the physician, the teacher or the potential spouse. Though our family’s experience was far more abundant in trustworthy souls, still the gift of trust is handed out very carefully and selectively as it should be. Only with time and observation of the passionate dedication to our daughter’s welfare and happiness and by witnessing the expertise and skill of the ABD team was I able to suspend my vigilance and lessen my grip. And what do I see now, looking at my daughter twelve months into this new life under their care? I see a powerful petite (and slimmer) package of self-confidence, greater focus and accomplishment, pride and self-respect, with more self-control over emotions and empathy towards others. Her apartment-mate, too, matches her in all these growth and slimming down areas.

And the red couch? How has it fared? Well it has taken a teeny bit of a beating but with our goof proof plan guarantee, one day the staff will pull out the contract from Bob’s Discount Furniture Stores, read the small print and put the call in to report on the chaffed edges of the red leather blend cushions that our daughter has scuffed while happily watching TV in the cozy living room and make arrangements for a replacement. Scuffed edges are a small price to pay for days of cozy comfort, and as the only casualty of the twelve-month cohabitation, that is pretty darn good.

How Long Does Bliss Last? We are all at the mercy of events, not just special needs adults. No life is static no matter what level of “bliss” it may have attained. Fate, family, funding, illness, weather, politics domestic and global, planetary alignments, all can bounce and trounce our daily lives in a nano second. Yes, I know that. But there is something quite specific about a life funded by the government that is (understandably so) constantly being reviewed to assess “need” with the intent to reduce funding aspects of that life whenever possible. And so DDS is in the process of reviewing the ladies’ life together with an eye to proving less need. ABD is our ally in this challenge. What is so interesting/ironic is that “doing well” – as in thriving in their new lives – signals not its true meaning, that their new life is working well. No it translates into something far less intuitive – that the ladies don’t need that life anymore. How long will bliss last? I am prepared at all times to scrutinize signs of future trends to locate the optimal existence for our special needs adult daughter who is so worthy, and gives back to society in so many ways. And as she improves her vocational skills and acquires new agility with the outside world, who knows what might be possible. But for now, the changes that would signal a profound shift in need, are nowhere in sight. Will DDS see the obvious too? I think so.

My Book: On another note, my book on Parenting Adult Special Needs: How Did We Get Here? One Day At A Time (tentative title) will be out early this fall available both as an e-book and in print. The book, which comprises the collected posts that covered the period prior to our daughter’s aging out through several months into her new life, is illustrated with our daughter’s collages and will have a list of resources. The book also weaves in the twenty-one years of preparation leading to the successful launch of our daughter’s adult special needs life to provide a glimpse into the process for other families who are on this journey. Stay tuned for more information as we draw closer to publication.

©Jill Edelman, M.S.W., L.C.S.W. 2012