The Reflex To Protect Meets The Need To Emboldened: Pushing the Envelope of Adult Employment

Photo of the Prospector Theater in Ridgefield, CT, for a blog post on Parenting Adult Special Needs.
Credit: Prospector Theater in Ridgefield, CT.

 

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.

Fingers crossed.

©Jill Edelman, M.S.W.,L.C.S.W. 2016

 

 

 

2015 Review – Adult Special Needs & Alchemy

2015 has been a year of accomplishment for our daughter. She has been employed at The Prospector Theater three days a week as an usher and gourmet popcorn baker. Her volunteer work at Pegasus’s Rider’s Closet, a charity founded by Georgina Bloomberg, remains a steady once-weekly endeavor of shinning boots and folding riding clothes. She attends music, jewelry-making and art classes in the evenings with SPHERE, the primary social netting of her week. She attends a day program on Mondays at Ability Beyond which is the agency that provides most of the services that support our daughter’s life. She continues riding weekly with Pegasus, even doing the unmounted program through the winter. Her week is crazy busy.

(The financial breakdown of all these activities is that her Pegasus riding classes and SPHERE programs are supported by her parents as well as vacations and membership at the town recreation center. That’s where families whose adult children receive government subsidies are pressured to find ways to provide additional support. For every dollar our daughter earns at The Prospector, the government reduces a portion of her funding. The number of hours she can work is also limited by her entitlements.)

The on-the-job training that The Prospector provides their employees is extraordinary and our daughter is reaping great rewards. She is more organized, articulate, stimulated and mature. This is evident to us when she comes to our home for holidays, the occasional weekend or when we all travel together. She takes pride in her new skills and her entire being radiates self-confidence and self-respect in a manner heretofore unseen. We bless Val Jensen, the founder and heartbeat of The Prospector Theater and hope that this model becomes an inspiration for the employment of adults with disabilities nationwide.

On another front our daughter’s relationship with her apartment-mate has strengthened – they have been together for 4 1/2 years – with the help of a psychotherapist (paid for by parents). Her 24/7 staffing continues, a product of both ladies LON (Level of Need), though Connecticut DDS (Department of Developmental Services) is cutting back services statewide and allocations are constantly being reviewed to make sure this high level of support is still needed. It is.

Another challenge that is endemic to the system we depend on for support is the predictable turnover of residential staff – as younger staff move up Ability Beyond’s organizational ladder or away. These changes always include a learning curve and transitional period for staff, the ladies and their families. Ability Beyond is thoroughly professional, caring and skilled – it is just the nature of the beast and will remain a feature of our daughter’s life.

It will be five years this June, 2016 since our daughter returned from Riverview School on Cape Cod to start her adult life in Connecticut. (She returned to the school in August for their biennial alumni reunion and the bonds with schoolmates and faculty were emotionally powerful to witness.) This August, 2016 will mark five years since she moved into her home in Ridgefield, CT. Her life is richer than we ever dreamed possible twenty plus years ago (she turned 26 in November). Yet what is also true is that with all the improvements our daughter remains a special needs adult. And we remain vigilant parents and facilitators still. On at least a weekly basis my mind explores who and how and on what schedule will another pair of vigilant eyes check our daughter when mine are permanently shut. Folks may think this is morbid, unless they too are parents of adult children with disabilities.

That’s how it goes – and we are in the company of all the parents of adult children with intellectual disabilities. I see older parents like ourselves scramble to figure out who will oversee their adult child after they are gone: a sibling; a cousin; an agency. At the Riverview School Reunion I sat in a forum with Head of School Maureen Brenner and other parents as we shared our resources, our joys and worries of parenting our adult children. I think most of the parents agreed that the years our children attended Riverview were perhaps the most peaceful and joyful in our parenting journey. We knew our children were safe, learning and having fun, most of the time – while our hands were no longer holding on to the seats of their bicycles.

There were a couple of themes I plucked from our weekend back at our beloved Riverview. The first, most vivid was that of Expanding Friendships: the warm embrace that the school offers to its alumni who range in age from 21-50 plus seems to regenerate itself each visit. Former students greet each other with shrieks and jokes and solid hugs – as with all reunions – but these adults are less self-conscious, less burdened by a need to parade their accomplishments. There is a profound sincerity and uncompromising joy which amply spreads itself around. This is our daughter’s second reunion since her graduation from Grow, Riverview’s post-secondary program, in 2011, and at each event she meets alumni, new to her, who she then friends on Facebook – creating an ever growing peer population though her campus days are over.

And that is the other theme: Loss. As we drove out of the campus that Sunday morning, our daughter expressed sadness and irritation at not being able to return to Riverview and live that campus life again. “I know that I have to live in Connecticut but I wish I could live on the Cape.” It is always hard for me to bear anything sad or uncomfortable for our daughter. I am a compulsive, often impulsive, fixer upper of emotional distress – even chose a profession that rewards me for such efforts. But after the anguishing feeling that I cannot fix this one, I tapped into the professional side of my brain and, voila. Hey this is just like anyone who re-visits those halcyon days of youth and campus life where your best girlfriends and funniest cutest boyfriends are in the room down the hall or the dorm across the green. Folks with special needs have normal feelings – normal loss. Typical feelings – typical longings. Are their feelings therefore more painful to hear or bear because they have special needs? Well, maybe, but actually they shouldn’t be – because we need to respond with the balance and awareness of the phases and stages of life that accompany everyone, all our children and ourselves – so that we can aid them in their growth and their wisdom. And so I did.

After all, the safest places in life are never forever – a mother’s womb, a Riverview School. Growth, change, loss, growth, change, loss, growth.

And the final theme: Alchemy: At the Riverview forum parents from states across the country described what their individual adult children were involved with – some living independently, some still with their parents, some in independent living situations. All manner of living and working, not working, socializing, not socializing, some isolation, some getting married. One enterprising mom has created a continuing education program for her daughter and others in their surrounding community. One of the parents presented their work with Head of School Maureen Brenner to create a very informative listserve that is available to all Riverview alumni families that disseminates and shares resources and inquiries and information on pending legislation.

What has crystallized in my mind over the last several years is that when the public sector of government oversight and funding interfaces with the private sector of creative dedicated philanthropy, the Val Jensens and Georgina Bloombergs of the world, the families that founded SPHERE, Ability Beyond, Pegasus – only then can adults with special needs attain a full life – government support, meaningful employment, opportunities to give back to their communities, a social network of friends and safety. Then something called Alchemy occurs- “a seemingly magical process of transformation, creation, or combination.” That’s the ticket – for a full life for our adult children with challenges it’s the mix that provides the most.

And now our daughter is 26 – our son almost 29. They are both grownups. One helps to run a successful business. The other works in a movie theater – each adding sparkle and skill to their workplace. One supports himself. The other is supported by government assistance and the philanthropy and dedication of the not-for-profit world. What is common to both as I look back on 2015 – each of them is thriving – though one is far more dependent on the kindness of the universe and the other, well, not so much. That’s the reality of special needs.

There is a new reality down the road. The Prospector Theater’s mission is to train and prepare their employees for their future launch to other workplace settings. Growth, change, loss, growth, change, loss, growth. When and where that might be – remains to be seen. Fingers crossed our daughter will be ready.

Thanks for listening.

©Jill Edelman, M.S.W., L.C.S.W. 2016

 

Pixar’s Inside Out and The Special Needs Universe

July 4th weekend I took myself to see Pixar’s Inside Out, the animated film about, of all things, how feelings work. (For a non-special needs oriented take on this subject, see my post on The Couples ToolKit.) The main characters are Joy, Sadness, Anger, Disgust and Fear. Joy is Amy Poehler – funny fun and caring in Pixar yellow. Anger is Lewis Black, who else – hot red. Disgust is Mindy Kaling, green eyelashes and a pout of disapproval. Sadness is blue, as in the Blues – Phyllis Smith. And Bill Hader is Fear – apparently fear is purple. And yes Riley, the eleven year old whose mind is inhabited by all these emotional companions and much more.

I didn’t see the movie with my daughter, though I would have liked to but at the time she was more interested in seeing Max, the story of a Marine’s service dog. She texted me three days later that she saw the Pixar film with her apartment-mate and staff and loved it and in particular, Joy. I text back, “I loved Sadness.” She texts back, “Why?” (More on why later.)

I saw Inside Out alone while my husband and son were in the theater next to me viewing Jurassic World. We were viewing these very different films at The Prospector Theater, a 501 (c) (3) state-of-the-art movie theater that employs our daughter and many other adults with disabilities. The mission of The Prospector, which opened to the public in November 2014, is to hire, train and empower disabled adults in a venue that offers a variety of jobs and skill training. The core mission of The Prospector is to show the world that disabled adults are employable assets in our society!

While I watched the characters whirl around the screen trying to manage Riley’s emotional universe as she and her parents leave the cool serenity of her Minnesota hometown to settle in edgy, gritty San Francisco, I thought about how critical emotional education is to children/people with developmental disabilities – a number of whom took my ticket, served up my gourmet popcorn and, at the end of the film, were the ever-ready cleanup crew, pink broom and dust pan in hand.

Inside Out tells the tale through animation of a “normal” child who at eleven years old wasn’t able to communicate her emotional distress to her parents or teachers about her fears and uncertainties in moving to a new town, or of the sadness of the loss of her childhood home. In fact, Riley didn’t know herself what she was feeling until her feeling managers, Joy, Anger, Fear and Disgust, recognized the crucial role played by Sadness – and through Sadness, the awareness of loss – to enable Riley to embrace her new life.

Can you imagine how a child with intellectual disabilities, which often include delays and disorders in receptive and expressive language, as well as oral motor and articulation difficulties, is going to fare under similar circumstances? The great irony of life with special needs children and adults is that they tend to be the most honest and cut-to-the-chase voices in the room, despite their communication hurdles. The social censors that drive the so-called “normal” in our choices of what we share, and with whom, don’t always compute in quite the same way in the minds of folks with social and intellectual challenges – hence the emphasis in social skills training.

Dishonesty or dissembling is not amongst their strengths, which is one of the many reasons working with special needs adults is so gratifying. Despite that, the identification of feeling is a subtle, elusive and often muddled activity for all of us. And our cultural inclination, so well depicted in the film, is to highlight joy and dim the lights down low on sadness. So how to protect those in our world who struggle to find the words to say many things; who often require our time and patience while they search to put together a sentence, a request, a description of an activity; how to protect them from the emotional muteness so vividly portrayed by Riley in Inside Out?

The language of emotion has to be taught: at home, at school, through art and culture, science and games. For children with disabilities in the language development arena, facilitating the identification, labeling and articulating of emotional experience should be number one on the hit parade of parenting chores. But this is not an easy task. Our daughter, whose struggle with language development at two was the first clue that something was “wrong,” relied, as young children do, on behaviors to express emotions of fear, frustration, disappointment, and sadness – but it was hard to know which, when, and why. Even a parent whose profession as a psychotherapist is all about feeling identification can be stupefied and paralyzed by the array of disorganizing behaviors that rain down on the average day in the home of a child with significant developmental delays. Our daughter’s vocabulary for many years was very limited, which, as we were often reminded by the panoply of specialists we saw, increases “acting out.” And acting out looked a lot like Anger – hot red. Confusing.

The specialists in our school and larger community, the speech therapists, the social workers, the special education teachers, had some tools in hand. First of course there is the facial expression chart, crude, maybe useful. Later in elementary school we moved to social stories, tales that were suppose to teach proper social behavior. The emphasis was on skills training, communication skills and social awareness. Our daughter participated in “lunch bunch” and other facilitated social activities where “typical” students helped model age-appropriate behavior. BEHAVIOR is a big important word in special needs academia. I think all those exposures were helpful. Privately she went to art therapy and had AIT training all aimed at reducing acting out and facilitating expression. That didn’t work. Pulling my hair out wasn’t working either. Behaviors were still the modus operandi for expression. At the time, I don’t think educators recognized that developing the awareness and expression of personal emotion was as important as learning appropriate social behavior. Telling someone with significant language difficulties to “use your words” is like telling them to fly.

In fact, one of the tools that worked best was the use of the cultural arts; movies; what we now call audio books, formerly tapes (hours in the car); stories of animals suffering and being rescued; love stories, always a favorite – Joy – yellow; and the master works of great artists. At one of our many visits to the Metropolitan Museum of Art, our daughter lingered at an oil painting of a young girl who lay dead in her bed, a beautiful rendering of youth halted, which led us to a discussion of a young child’s illness and a family’s loss – Sadness – blue. We watched Finding Nemo, which surprisingly wasn’t a favorite; it was scary – Fear – purple.

The key for parents in developing emotional awareness for our children is “being there” modeling emotional acceptance, our emotions and their emotions (one of the reasons parents should always say “I’m sorry” to their children when they do a bad thing). As parents we can experience our feelings alongside our children – not to overwhelm or flood them but to be real; on the couch; at their bedside; in the movie theater; at the museum; over a screen – not to tamper down the lights on the “bad” feelings or reframe them as something else; instead to shed light by giving them a name and saying them out loud. “Boy, that part in the movie made me sad; joyful; angry; frightened; disgusted. How about you?” It doesn’t matter if they can answer the query at that moment – you have accomplished two things: you have given a feeling a name and you have shown your personal acceptance of having that feeling.

In middle school, our daughter’s team recommended that she see a psychotherapist regularly to help her identify, understand and communicate her feelings – someone who knew how to dig in and work with children whose language skills and cognitive challenges made them “special” therapy patients. (That was the goal years earlier when our daughter’s expressive language skills were significantly limited and I sent her to art therapy.) Our daughter is twenty-five years old now and, to this day, this same psychotherapist plays a critical role in her well-being. Finding a professional who our children learn to trust and who understands them is an incredible gift and a tremendous partner in this journey.

Emotional education starts with the parents – to be there both as a model and a guide in our children’s emotional development. Inside Out, in its animated universe, showed that the only way Riley could grow up to be her optimal self was through experiencing all her feelings, not cherry-picking the happy ones or the socially acceptable ones; that all her feelings would guide her in making honest and personally beneficial choices. Otherwise little Riley was lost, heading out of town into the world of emotional muteness and big trouble.

©Jill Edelman, M.S.W., L.C.S.W. 2015

 

 

The Power of Meaningful Employment – 1/29/15

Our twenty-five-year-old special needs daughter returned to her parents’ home to spend the latest N.E. snowstorm. We have a generator. Two days of cooking, watching The Big Bang Theory and The Fault in Our Stars and generally hanging out went swimmingly. The bedtime hour and wake up call on the last night and following morning were remarkable for their lack of drama. “Go to bed” with variations had been my unsuccessful refrain and lament for over twenty years of co-habitation. Though our daughter went to boarding school at 16 1/2 until 21 years of age, even during school breaks and summer break the refrain remained unsuccessfully the same – the proverbial broken record.

Our daughter is literate, reads well and has a remarkable vocabulary; yet the world of time, numbers and money has remained unchanged since early elementary school. Measurements of any kind are abstractions that have little meaning for her. So when you say it is nine o’clock or ten o’clock or draw pictures of that clock or count hours or minutes between events this information does not compute in our daughter’s clever but very special brain. She knows her daily and weekly schedule – a complex entity of work, programming, exercise and social outings – but five dollars, three hours, ten minutes, 9:30, bedtime: these concepts remained out of her grasp. At least until now.

This time when I said to my daughter it is 9:30 time to go up to bed, turn off the screens and she showed little interest, I chose a different refrain: “You have work tomorrow and you want to be fresh for it” and bingo – it clicked. TV turned off, screen closed down and up the stairs to bed she went. Just like that. And for a very wonderful reason: for the last four months our daughter has been meaningfully employed at The Prospector Theater in Ridgefield, CT, where she receives training and wages as an usher, popcorn maker and useful member of a thriving, four-screen state-of-the-art movie theater with a unique mission: “to provide educational and employment opportunities to adults with developmental disabilities through the operation of a four screen cinema.”

Recently our daughter reviewed an invitation to a dear friend’s birthday party in another state. It is an evening party and a five-hour round trip, a long haul for sure. I presented the scenario to her; A Saturday night drive which could include staying overnight or returning the same evening. She placed it all in the context of her work week ahead. I listened to her voice her thoughts. “I don’t want to be tired. I have to work. I have to be focused. No I don’t want to go.” She felt some sadness and concern about disappointing her friend. But her work ethic was the deciding factor.

The Prospector doesn’t mess around with its “Prospects”. They are trained not just in their jobs but also in the responsibility of holding a job. They are not coddled; they are taught and supported and respected. Time may be an abstraction but how it affects performance on the job is now computing for our daughter – has weight – has meaning. Bedtime and awake time – numbers of hours of sleep time – time becomes a resource not to be dismissed or wasted. Time has a correlation with performance – keeping up with expectations – standards. That’s what Meaningful Employment has done for our daughter.

And in only four months. Touch base with us in another six months – maybe dollars and cents, measured in popcorn sales or tickets – might compute too.

The Prospector Theater and its founder Valerie Jensen hope that this model of meaningful employment for disabled adults can provide a template for others across the country to harness their extensive abilities – you know – Give Them A Chance To Sparkle To Shine To Soar and they will. Our daughter is soaring – can’t you just picture your adult child soaring too?

Jill Edelman, M.S.W. , L.C.S.W. 2015

 

 

Employed! And Some Tips: 11-4-14

It has been ten months since I posted on our daughter’s adult life. In a few days she will be twenty-five years of age. And while I am counting, it is three years and four plus months since she returned to her home state to begin her special needs adulthood. What our daughter has accomplished in these three plus years is pretty impressive. From a parental point of view, it is monumental.

Only four years ago I was trembling at the thought of how to ensure a safe and fulfilling adulthood for her. I had many dreams and many fears. I acted on both and the dreams have won. Now our daughter is a PROSPECT, that is an employee of The Prospector Theater, a 501 (c) (3) non-profit state-of-the-art multiplex movie theater opening to the public on November 21 in Ridgefield, Connecticut. The Prospector’s mission is “to provide adults with disabilities opportunities for meaningful employment and vocational training.”

The Prospector was also a dream, that of its creator Valerie Jensen. Over the last ten years Val has been deeply involved with another non-profit, SPHERE, and from this experience she conceived of an employment entity for adults with disabilities. Val combined her devotion to her sister Hope and to the special needs community with her training as an educator and her passion for cinema. She and other determined individuals harnessed the resources to bring to fruition a work setting where employees with special needs will provide all the amenities of a large entertainment venue. Many of us know that it takes a village to raise a special needs child but it might also take the support of a village to allow the successful employment of their special needs and disabled adult citizens. Ridgefield, Connecticut, is a model for that kind of village.

My years as a parent of a child of difference have shown me that many of the resources that have benefited our daughter come from the private sector – from families with means and vision and a child or a grandchild or a sibling or a cousin with special needs. Inspired by their experience with the special needs world and able to think outside of the box, these families step up to create schools and non-profits that blast open doors otherwise closed to this population – creating entry into places where they can learn and train and work. Val Jensen, her family and friends, Prospector benefactors and the town of Ridgefield have faith in their special needs community, believe in their value as employees and have tangibly shown that belief by their actions – just as our family has always known that our daughter has the ability, intelligence and personality to set the world on fire. Just watch her.

Though our daughter will likely depend on state and federal funding for her shelter, food, clothing, staffing and healthcare for the rest of her life, there is no doubt that her quality of life is tremendously enhanced by the Val Jensens of the world. And the world around our daughter is genuinely enhanced by her active presence in it.

If you have an idea and resources and a passion to provide opportunities for adults with challenges then buddy up with others to bring your ideas to fruition. Your dreams might just become a dream come true for those worthy of having a chance at life in all its dimensions.

Tips:

1. By the time your child is entering secondary school you should be looking around for a town with an inclusive tradition toward special needs adults.

2. Keep in mind that it is never too soon to join with other parents in your area to brainstorm future residential, social and vocational planning for your child. This is particularly crucial for families whose special needs child may not qualify for government entitlements because of testing scores that exceed the state’s cut off for qualification.

3. All the wishing in the world won’t prepare your child for a safe and fulfilling adulthood. They may need supports. They may not. But be prepared and start planning early.

©Jill Edelman, M.S.W., L.C.S.W. 2014

 

 

 

 

 

 

A Mother Reflects: Daughter With Special Needs Surpasses Doctors’ Predictions (from NYMetroParents)

My following post was first published as an article in NY Metro Parents on March 24, 2014. (Click here to read it on NYMetroParents.com)

Our 24-year-old daughter lives in a two-bedroom apartment, 15 minutes from our home, with another young woman and staff supervision. She has two volunteer jobs and one paying job. Her volunteer jobs reflect her passion for animals: She shines boots at the Rider’s Closet at Pegasus in Brewster and tends to kittens at the Complete Cat Clinic in Connecticut. Her paying job taps another passion: creating art. She is a gifted collagist who is paid to create original designs for SPHERE, a theater and arts program for adults who have special needs located in Ridgefield, CT. We are parents of a very busy young lady whose free time is taken up riding horses, making jewelry, learning improvisational acting, seeing her boyfriend, and competing on a Special Olympics aquatics team. She cleans her room, does her laundry, and helps with meal prep and shopping. In any crystal ball, the image of a life such as hers would appear in vibrant color, a whirlwind of movement, sparkle, and human warmth; a satisfying, stimulating adulthood.

This is our daughter’s life today. Twenty years ago I had no image at all of her young adulthood. The crystal ball was a void, and all I heard in my head was the voice of a neurologist saying to me, “Do I think your daughter will ever live on her own? No, I don’t think so.”

What were we dealing with then? A girl whose chronological age did not match her development, a child without a clear diagnosis—no spectrum, no syndrome. She was aptly labeled an “artichoke” by a renowned pediatric psychologist who, after extensive testing, concluded that “your daughter is an artichoke—she has many peaks and valleys and doesn’t fit into any one diagnostic category”—all said with a twinkle in his eye and a perplexed countenance. A child whose behavior manifested a panoply of delays and challenges across the board: expressive and receptive language difficulties, fine and gross motor delays, arithmetic disorder, and difficulties coping with peers, with family, with sleep, change, transition. A child at the mercy of her anxiety, and her family at the mercy of her meltdowns. Yet a child filled with possibility.

Gratefully much has changed since that time, most of all our daughter. But in those early years the journey was terrifying because all I could foresee in that crystal ball was loneliness, boredom, and isolation for our daughter, and a lifelong burden for our son. That was my nightmare. My mother’s heart, however, did not let me linger in the darkness of my fears. All my energy and fervor went towards making sure that nightmare would not come true, that our child of difference would flourish in her adulthood.

To read the rest of this post, click here.

 

 

Unbridled Joy, Some Ick And A Great Cocktail: 12-17-13

Twenty-Four and She’s So Much More: Three months have passed since I posted on our daughter’s adult life. And the reason rests in the paws of our new puppy Tillie, whose own developmental stages have usurped much of my writing time with her walking, leaping, nipping and general mayhem-ing. Across town our daughter is developing not in length or stride as is Tillie, but also in leaps and bounds and this knowledge has filled me with unbridled joy. Our daughter’s growth is quantified by instruments of measurement different from those of previous years; no longer by IEP’s yardstick of trials of success and failure. Now how she handles social challenges; how well she cleans up her room; how often she shows true gratitude for the constant care and love of others; how quick she is to set limits when others exceed their own at her expense; and how well she recovers from frustrations, hurts and delays in gratification to move on to whatever the task at hand, not stuck in the muck of her own making.

Interpersonal Growth: Historically – and this history goes back almost two decades – by this time of year our daughter would have had at least two episodes of interpersonal alienation and inappropriate behavior lasting a week or more and leaving in their wake the need for some serious repair. Not this year. I did not receive phone calls or texts denouncing staff for non-gratifying limit setting (‘no you cannot stay up looking through your old yearbooks’) or railings against her peers for ‘getting in my space, she asked me why I was upset. I don’t like that! She’s getting in my business.’ Quite the opposite; when faced with two interpersonal challenges that extended over a significant period of time, our daughter didn’t share any of it with me until we met for scheduled activities, one a lunch date, the other an excursion to the mall. There were no dramatic summonings to aid a distressed damsel; no avalanche of texts or phone calls delivered through sobs and laced with indignation and fury. Instead she introduced one conflict with her traditional introduction “Can I talk to you?” and calmly proceeded to describe both some fear and frustration with another’s behavior and asked for our help in communicating her feelings to her staff. Her articulation of her dilemma reached a level of maturity that exceeds, in my experience, that of the average grown up. I witnessed her other challenge in person: a friend left a hurtful voicemail which she picked up while we were driving back from the mall. Though at first angry at the recorded reproaches, she did something truly remarkable – she quickly shifted from anger to putting herself in his shoes, telling me the reason she thought he was upset and expressing her sadness that she had neglected and consequently hurt him. In my business we call that being accountable for one’s actions, or the shorthand, “owning.” She then called him back and apologized. In subsequent weeks, when this behavior continued, she reached a different place and decided to ‘call the whole thing off.’ But first she tried empathy and patience. Really, who does that?

Employed and Prospering: The good news just keeps on coming. When the president of SPHERE, Valerie Jensen, the theater arts group of which our daughter is a member, viewed her collages in my book, she moved quickly to hire her to make collages for SPHERE. This enterprise is not a solo gig. Our daughter and another SPHERE member sit at a long table together with their materials (in our daughter’s case, piles of fashion and pop culture magazines) each plying their craft. They take a break to make lunch together and are virtually alone with minor supervision, for three consecutive hours once a week. They must cooperate and collaborate, be flexible and probably generous at times with the other’s way of being and style of interaction and it is working. What can a mother say? My little girl is no little girl anymore; she is a woman of grace, talent, tolerance, increasing independence and is a paid artist. Whoa!

When she goes to the bank with her staff now she fills out the slips for deposits and withdrawals. And finally, after years of frustration, I have gotten across to others that playing with fake money or even the most seemingly stimulating educational numbers and money computer games is a waste of our daughter’s time. In fact these well meaning endeavors tap into an area of experience for her that is so high in failure and laced with acute anxiety that the amount of educable availability our daughter can offer up is zero. Unless it is meaningful to her, don’t bother! I have not a clue if she will ever learn to correctly identify the five from the ten or pay for her deodorant without help, but I know for sure she will not learn this way. Really, hasn’t she suffered enough?

Instead we have shifted the plan to focus on purchasing one item over and over again, shampoo, deodorant, tooth paste, whichever item she runs out of most quickly, and learn how to pay for that one item, with real money. The item, the cost, they need to be a constant. Someday maybe the money concept for that item will become a constant too.

Monumental Moment: That was the subject of an email from an Ability Beyond (they have shortened their name, leaving out the “Disability”) staff member who I often refer to as the ‘heart’ of our daughter’s adult residential life. Let me give you some background here to enhance your understanding of the significance of this moment. Since early middle school, our daughter has been obsessed with our town’s high school yearbook. For many years she insisted on having a copy for each current graduation class, and to protect our son’s copies from the weathering that her compulsive page turning led to, his were hidden away. The roots of this obsession were transparent to me – to become a member of the group, belonging, a part of the peer world, if only in print. And though its sheer pathos and yearning broke my heart, in many ways it was a benign and applicable compensatory activity that served its purpose – to facilitate her connection to the outside world and in fact, from my observations, provided new links to her brother and his friends, despite the awkward, often embarrassing and relentless character of the process for him.

As a family, we were forever finding shredded bits of faces and pages everywhere our daughter wandered, the car, the bathroom, the bathtub, the kitchen, my office. Backs of the books would break and I would descend upon the high school office to beg to buy another copy of a particular class year, if they had any. Books were taken on all family trips, to camp and boarding school and of course to her new home in Ridgefield two and a half years ago. Ample copies were also left here in her parental abode. Clearly this was her version of the blankey, her transitional object, her everything. The books provided stimulation, comforting and a chance to be a part of something that generally eluded her. But this wasn’t only perusal material. She knew the faces and names of members of each class, from freshman through senior, covering a period of at least six years. She bombarded our son with questions about whether he knew this set of twins or that cute boy. She went over to a young handsome graduate who returned one day to the school while she was a freshman there and called him by his name. She knew him but he had no idea who she was. This wasn’t rote memorization. Eventually she would meet the person or their sibling or parent directly or hear about them through her brother or his friends or see them in a play, at the supermarket or later on Facebook. All efforts at limit setting – lights out, time to go, bus waiting, plane taking off without us, eating – all parameters were challenged by this obsession. Now to the email. Here is the verbatim content of the email the staff sent to me:

We had a monumental moment today at RCRS. (Our daughter) got up this morning and went and got her yearbook. She came over to me and in her exact words: (Staff Name), I do not need this anymore and I am throwing it away! I asked her if she was sure and what had made her come to this decision. She replied: I just don’t want or need it anymore, I am strong enough now!!!!!! Everyone has helped me to become strong. WOW!

What allowed for this growth, what has gone into this cocktail mix that is producing this outcome? Absolutely everything you can think of: years of dedication from professionals and paraprofessionals who have taken the time to learn who our daughter is first of all and then give her their best – it has to be in that order, as I mentioned earlier, or it won’t work – to learn who she is and then fire away; family of course, the foundation for all else, striving to respect who our daughter is (as hard as that was to figure out) until the requisite acquisition of enough new skills spilled light over the surface of this particular special needs child. What is the material that has gone into the foundation of this latest manifestation of increasing self-confidence? My guess: the team that is working with her from Ability Beyond. It is a cocktail mix that has far exceeded my expectations; this team, the coordinators and their staff who have their boots on the ground fighting for our daughter’s growth and safety daily. Powerful mix indeed.

Some Scenarios May Never Change: Despite my unrelenting joy at our daughter’s adult life two icky things happened this past week. Icky in the avalanche of pain and fear they caused inside me for our daughter. First we attended an event where someone I didn’t know well saw our daughter for the first time. I introduced them and watched this person’s eyes take in our daughter interacting with her brother, a slightly worried and puzzled look upon their brow. Was it just me or did I witness an all too familiar moment when another tries to process something unexpected: that this is a special needs person, that we have a special needs daughter. It was a searing moment for me, not new but not something I see often anymore. Don’t think less of her; she is an amazing person. Respect her! Don’t feel sorry for her or for us. And then my other icky moment, which happened when staff talked to me of our daughter’s increasing independence and the possibility of a future job at the new SPHERE enterprise, a multiplex non-profit movie theater, The Prospector. Currently under construction a block from her apartment, The Prospector will open in 2014; 95% of the employees will be special needs adults specifically trained for their jobs by The Prospector staff and the agencies who will work with them. What could be better? ‘She could walk there on her own someday.’ Really? Across the most dangerous intersection in the town? NEVER!

Yes she could walk down the street to the movie house, a straight line from her front door. But cross that bizarre intersection with the blind corner alone, the one the town selectman described to me when she first moved in as so dangerous? Even with all the training and practice in the world and staff watching her every move from the curb, some risks are unnecessary no matter how significant the gain may seem. Of course I immediately shared with the team my reservations, which I later followed up in an email so I could sleep that night. Staff are kind and reassuring but I insisted on having all in writing. I will not be around forever. Who will make sure that nothing like this could ever happen? Unless they put in traffic lights and she gets an official safety evaluation and so on, absolutely not and not even then. Staff provided the specific protocols that have to be followed before permission for a step such as this could be implemented, which include guardian approval. But no parental guardian lives forever and staff changes are guaranteed. Yes, I know, it is so hard to reassure a special needs parent that long after they are gone others will be there to fill their shoes everyday for the rest of their child’s life. Others whose focus will never wander from the most important goal of all, keeping their child safe.

My life is so easy now. I am so grateful. Our daughter is so happy. Keeping my eyes out for ick and my fingers crossed.

©Jill Edelman, M.S.W., L.C.S.W. 2013

Independence Farm Interview: 10/4/13

The Abridged Version: Independence Farm a transitional residence for males with moderate learning challenges in East Sandwich, Cape Cod, Massachusetts, invited me to do an interview for their blog on my book, This Crazy Quilt: Parenting Adult Special Needs One Day At A Time. I was excited and flattered by their interest.

As usual, nothing passes my way without my ever-scrutinizing eye for process at work and indeed I was amazed at how effortlessly I was able to respond to each of their questions. The journey recorded in the book is so encoded in my mental/emotional being, defining a segment of self that I believe matches that of many parents of special needs children. And in no small measure of all parenting, which though at its most intense only lasts a couple decades of our hopefully long lives, yet leaves a permanent definition of self like no other life adventure.

Take a look at the interview. I hope that it is useful to you and your family. (You can also read the interview on their blog here .)

 

What motivated you to share your story?

As I approached June 2011 knowing that was the month our twenty-one year old daughter would return to our home state after graduating from the post-secondary program Grow, I became increasingly concerned about whether I could pull all the pieces of funding, residential and vocational programing together to create a safe adulthood for her. I had been preparing for this moment for almost two decades and yet I felt unprepared and scared.

I shared my worries with a friend who happens to be a journalist and she blurted out “You should write about this. No one is telling this story.” Since I was blogging as a psychotherapist/clinical social worker on couples’ relationships, I knew how to do this and it made sense.

On April 1, 2011 I published my first post at Parenting Adult Special Needs. I continued to write a daily post for six months and then a weekly post for another six months, covering the workings of that transitional year when our daughter aged out of a special needs childhood into a special needs adulthood. Halfway through the process I thought, this should be a book. I didn’t want all the personal and factual information that I had acquired to get lost somewhere. The feedback I was receiving from blog readers clearly indicated the usefulness of the posts. I concluded that our family’s experience could be of value to others.

As a therapist I focused not just on the challenging pragmatics of that year, but as a parent wading through the morass of feelings triggered by the journey. In my book I constantly dip into the past life rearing this “child of difference” to offer a long range perspective so folks beginning the journey would know that we were not any more equipped to handle the complexity of challenges than they.

I was particularly surprised when parents of “typical” kids were impacted by my posts. Much of what I describe as my challenges as a parent of a special needs child and a parent of a sibling of a special needs child, rang true for them as well. They were often relieved to know that they weren’t the only ones who were grappling with parenthood.

 

We loved reading how your story affected other families. What have you learned from other parents that have shared their story with you?

At least half of the guidance I received from others came from other parents. The other half clearly from specialists, aids, “angels” as I call all the many who guided us on this journey. But parents of special needs children are a godsend. Sometimes I would just pick up ideas as I did overhearing a conversation by two parents sitting on a bench near me at a Special Olympics swim practice. The inspiration to send our daughter to a sleepaway camp, which was perhaps one of the most significant steps taken by our family, came from just such an incident. It hadn’t occurred to me that this would be possible until that moment.

All kinds of suggestions come from chatting with other parents. But even more, parents of special needs kids need each other desperately. Worries about being judged or the discomfort of the platitudes often extended with kindness by “typical parents” make sharing are stories with them uncomfortable. Also the pity that I encountered or the “you are saint” type offerings were so awkward, painful and though kindly, frankly useless. Parents in the trenches of raising a child of difference get it, share the humor and the absurdity of many situations and offer acceptance of the ambivalence we can feel about these children. We love them but… and the guilt, perhaps one of the most painful components of special needs parenting, that shadows us throughout the tough times with these kids.

As people who have dedicated their lives to helping young adults with disabilities we rely on a team approach from many professionals, parents, and community members.

 

Who has been the most helpful advocate for you and your daughter?

Throughout my book I refer to “angels” and “it takes a village to raise a special needs child.” There are school aids who gave everything but their own blood to our daughter. Special education teachers, speech therapists, O.T.s, a P.E. teacher who taught our daughter to swim, folks from our daughter’s equestrian program Pegasus, organizations such as SPHERECT.org, her provider agency Ability Beyond Disability, Gordie Felt, the director of Camp Northwood, and the incomparable expertise of our daughter’s boarding school Riverview whose faculty and administration brought such dedication to their jobs. I was that parent who asked for attention for our daughter and these groups provided it. Our local school system too came through, though having a special needs child in the public school system (our daughter remained in public school until sixteen years of age) requires constant attention to every detail and communication with faculty. And when I needed to remove our daughter from their “care” and send her to Riverview, I fought for that but never with acrimony. I was so grateful to them for all their hard work with our daughter over many years.

Much of what you get from people is also what you give them. As an individual in a helping profession, I understood that the people who worked with my daughter were dedicated to doing the best they could and it was my respect for their skills and dedication that I think helped me to get the best for our daughter from each of them.

As caretakers we always ask for advice before advising others.

 

If you could give only one piece of advice to a parent, what would that be?

Well, I will give you two interconnected pieces of advice.

The first piece: Start early to prepare for the possibility that your child may never live independently, a very painful process which I address throughout my book. Practice “letting go” so when that day comes, you are as prepared as a parent can be for your child’s leap into a special needs adulthood. Nothing will prevent you from having fears, but use those fears to energize you. Don’t rely on magical thinking, silver bullets, denial and avoidance. Be compassionate with yourself while at the same time taking the steps that you need to take to get from “here to there.” Talk to anyone and everyone and follow the breadcrumbs that lead to a good outcome.

The second piece: Protect your “typical” children by ensuring that their special needs brother or sister will be safe and stimulated in their adulthood without being dependent on their brother or sister. The vision that my son might have to be responsible for our daughter for the rest of their lives haunted me and focused me on the future once I realized/accepted that our daughter’s adulthood would be “special.”

Those two factors propelled me to start early and work hard to secure a safe future for our daughter for both her sake and for the sake of her brother.

©Jill Edelman, M.S.W., L.C.S.W. 2013

Life Is A Horse Show: 9-19-13

Catching Up: Our daughter’s life is streaming live with new peace and purpose. Just in the last week, patches of the quilt that I have dreamed of for years are now in place. The first, that she would find a venue to inspire her to resume creating the amazing collages which I used as illustrations in my book, This Crazy Quilt: Parenting Adult Special Needs One Day At A Time (which just received an excellent review from Kirkus Reviews that you can read here). And second, that she would overcome her resistance to performing theatrically, an anxiety that kept this theater loving gal from opportunities at her boarding school and subsequently back home in Connecticut at SPHERE, an organization which offers special needs adults, among other services, the priceless gift of acting as a repertory group in theater and film.

This week SPHERE stepped in with opportunities to complete both patches of the quilt: our daughter will be creating collages for them to use in greeting cards and posters under the direction of SPHERE President Valerie Jensen; and SPHERE has established a weekly improv class led by the same gentleman who ran a weekly music/theater class for Ability Beyond Disability’s day program where our daughter overcame her shyness and put on an hilarious performance as grandma some months ago. The teacher calls her an improv genius.

Life Is A Horse Show: Pegasus, the always giving equestrian therapeutic riding program our daughter attends each week, gave us a heads up on the $200,000 American Gold Cup Grand Prix in Old Salem, New York. Sunday my daughter and I headed there to watch the competition for the cup, the winner of which will go on to the World Cup competition in France in 2014. The day was of that crisp sunny early Fall variety that New Englanders live for, replete in the greens of well-tended grass, medieval inspired tents, delft blue skies with smudges of white cumulus, green, pink, red, white and blue jumps and nuanced hued grey and brown horses topped off by the silhouettes of helmeted riders. All of this visual candy was set against a soundtrack of mini-equestrian girl chatter, dog yips and yelps (the ASPCA had an adoption day there, too) and the loud and hilarious babble of a baby in a stroller perched on the grassy hill where we sat, his oral motor skills the envy of a special needs mom who two decades earlier, learned how important blowing blueberries and producing bubbles were.

Many of the top riders in the world competed in the show and were judged by the number of faults counted against them during their ride: time to complete all the jumps; the number of down posts if any while jumping or refusals, e.g., horses refusing to jump or any other behavioral disobedience. The rider with the lowest number of faults wins, which sounds vaguely like a reality TV dating show competition. Sunday’s winner was Brianne Goutal, an accomplished rider one year junior to our daughter. These equestrians are skilled, practiced and determined. Yet even with all that, they have many “faults.” Posts clatter down, horses refuse to jump, and riders must be patient while simultaneously coaxing their steeds back to the jump to try again, while losing seconds and likely the cup (and perhaps asking themselves, as mothers do, what did they do wrong.)

Faults, Refusals, Obstacles: Raising a special needs child, or any child, includes all of these challenges.  Life in general is one giant competition to achieve optimal success against multiple obstacles. In the special needs world we have to do a lot of coaxing, trying again, and need patient acceptance when the horse, oops, child, is fearful or unready to take the leap. Perhaps they don’t have the requisite skills to soar over the highest post or even the lowest post, as their typical peers do. Conventional expectations have to be tossed out if anything good is to happen.

My personal fascination watching horse shows, a world my daughter has gifted me, is the knowledge that the riders and their horses attempt perfection each time, most often failing, yet they come back and try again and again. And the time spent in between is devoted to more training, more practice, more discipline and more dreams. They are a twosome, a team of two, but each may not always be equally committed each time or equally willing or equally able to do their part of the job.

The Guiding Light of Daily Life: We all must work at attaining our dreams, daydreams, visualizations, wishes, hopes, prayers, whatever the terminology. That’s what they are for, providing the guiding light of daily life. I keep dreaming dreams for my daughter (my dreams) and these two recent outcomes are more dreams come true. But it is she who guides me, the dreamer. It is her interests, her talents, her skills that set my dreams in motion. Yet as with the equestrian rider, I must be patient, coaxing, determined yet accepting. It is she after all who has to make the jump.

That’s my self-proclaimed job description, dream implementer. As always, it takes a village to realize these dreams. Thank you SPHERE, Valerie, Ability, Pegasus and most of all, my daughter who inspires me and has the goods to deliver. You really rock my boat.

P.S. I just received a text from my daughter after her first collage making effort with Valerie. I’d like to share it with you:

I had a good time at Val’s

When we got there I worked on my thing

“I’m so glad.”

And worked all day

Had lunch

And worked again

Now I am going to take my meds

And get ready for horseback riding

“I am so proud of you. A real paying job.”

Thank you.

“Are you proud of yourself?”

Yes.

©Jill Edelman, M.S.W., L.C.S.W. 2013

 

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