At many points while raising children, we come to crossroads where directional choice is complicated, when a parent’s impulse to protect their child collides with the necessity of launching their offspring into adulthood. Parents of children with disabilities have a particular challenge at these crossroads because by definition these children are more vulnerable than others, more at risk than their peers throughout their lifetime. That’s how they come by the designation – that is the very definition of special needs, of intellectual disability. So how does that parent measure risk versus opportunity? How does that parent whose vigilance is ingrained in every cell of their being, loosen the hold, be bold in order to emboldened their child to go forward, to do what’s hard and to take some chances?
Last week I went to a meeting at The Prospector Theater where our daughter is employed. The crux of the meeting was to narrow down a schedule that would allow some predictability in our daughter’s week. Movie theaters, like restaurants and retail, work in shifts and need folks when business is busy. There can not be a guarantee of predictability. Holidays and slow times and seasonal variations all determine what hours and how many hours employees need to be on the job. And there are other considerations – like the popularity of a particular film – will there be crowds or will it be slow? The numbers have to work. I found myself in a somewhat unfamiliar place as a mom. To have a job and the training that our daughter receives at The Prospector is a gift, an opportunity unlikely to fall in her lap ever again. So if she works late in the day into the evening and is tired, that’s when she is needed. It’s a job. Is she safe? Absolutely. Is she stretched? You bet. Will she have to adjust to working weekends and miss some fun stuff? Yes. But as she says “It’s not just that.”
What are the typical worries for the mommy in me? They are many and mostly historical – a history where any one aspect of daily life, if off kilter, can trigger a chain reaction that alters every other aspect of life. Fatigue, hunger, overstimulation, under stimulation – the images abound. Late nights, family parties, unusual hours for meals, snow days, closed shops, power outages, can push a vulnerable individual over the edge to a place we’ve seen but don’t want to revisit ever again. Those of us who reside in the special needs kingdom know that “change” is monumental; transitions very difficult; unpredictability more than unsettling and a loose structure, an anathema. Even as I type this my heart is beating faster.
But my current reaction to this episode of challenge was interesting to observe. When our daughter’s Ability Beyond staff called me with concern about the changes in her schedule and how upset she was that she couldn’t attend Jewelry Class at SPHERE one evening, I didn’t feel protective. I didn’t rush to coddle her or to ask for special privileges. I didn’t feel frightened. I felt “What The ….?” The notion of working odd hours is nothing new to a girl whose parents are shrinks and have always worked nights and weekends, who have no paid holidays – just ones they allow themselves to take. Our daughter lives in an apartment staffed by young women who work shifts, some arrive at 8 P.M. and leave at 8 A.M. Some weeks, Sunday’s staff is replaced by Saturday’s staff. Changing staff is the constant. Her world is surrounded by folks who sacrifice fun for salary, rest for responsibility. Models are everywhere and very close to her heart.
Last week’s meeting at The Prospector worked well. I know what they are doing there. They are preparing their Prospects for jobs out in the world, the real world, and I want our daughter to benefit from their commitment, expertise and in my opinion, brilliant model on how best to do that. Their support is exceptional and unusual but the standards they follow are the standards of employment practices dictated by our country’s labor laws. Breaks are allocated according to those standards. No shows are treated according to those standards. Showing up is driven by those standards.
During the five years that our daughter spent at Riverview School in East Sandwich, MA, I was privileged on many occasions to hear Maureen Brenner, Head of School, speak to her student body with explicit clarity about the values required to achieve success. At these events, she reinforced the goal of being flexible. She knows her audience. This compassionate and expert educational center emboldened their students to risk, to grow, to face fears and fight for achievements. And what echoes forever in my mommy ears is when, a decade ago, then Admissions Director, Jeanne Pacheco, answered my query, “How can you tell if someone will make it?” with “If the parents aren’t ready, the child won’t make it.” Well, I was ready then. I’ve been ready many times before and now I’m ready again. Some of the ready was “terrifying but ready,” the sick-to-my-stomach-ready when I sent our daughter off to Camp Northwood in the Adirondacks. Some of the ready was just “enough already” when I’d drag her to Regional Special Olympics aquatic tryouts. This is a new ready – Carpe Diem ready. If we don’t seize this day, it may never pass our way again.
So how to facilitate this change, how to make this concept comprehensible and acceptable to our daughter? How to convey that work trumps fun; fatigue from work is normal; change is part of the job? For one thing, everyone has to be on board – Ability Beyond staff members, family members, we all have to use the models and the mantras of the work place. Empathy can really go awry if misplaced. So yes it sucks that you miss jewelry or a Saturday outing, that your schedule changes from week to week. But you are an employee of a movie theater and like all of us who have to show up when work calls up, that’s the job. It’s a huge mindset change for a young lady who, though proud of her work, is accustomed to accommodations, whose mom finds it so painful to see her disappointed, hurt or mildly deprived. Yes that is one issue. But the other issue is the intellectual piece, the cognitive piece, how to help our daughter grasp the concept that success on the job means doing what the employer wants. Creating a belief system that floats this boat, that she can feel is her own. So hey, that’s how you keep your job or your customer or your patient. You fulfill their expectations. We all do that, right?
And she can do that. But everyone else has to echo that mantra with kindness, support and certain belief that this is in our daughter’s best interest. She won’t have this chance again, not like this.
We are a strong team, Ability Beyond, The Prospector and The Family. We are aiming toward as much consistency as possible yet also accepting that change is a big part of this job. And what reinforces this fortress of support is that when the movie house is packed, our daughter sparkles. Her job performance soars – so it’s a win-win for everyone.
©Jill Edelman, M.S.W.,L.C.S.W. 2016