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