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