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Posts tagged ‘Help’

Notes from the Universe (A Love Letter)

“A sense of having been forgotten by ‘normal’ life is common when we are going through difficult times, as if we are trapped in a parallel universe where broken people live.”  

                                                         – Sharon Salzberg, Love Your Enemies, 2013

Dear world,

When my daughter was diagnosed with autism twenty one years ago, there was an overwhelming perception that our family had been snatched out of the only universe we assumed existed, and dropped into a parallel reality from which we could see friends, family members and colleagues continuing along in a brightly lit time-space continuum to which we no longer belonged. Our new universe moved slowly, was a little darker, and the force field between the two realities seemed impenetrable. It often felt as if people in the other world had the power to reach out and pull us back in, but they chose not to.

The assumed sense that one could move about and participate freely in the community was replaced with a list of all the places no longer among our destinations – day care centers, libraries, concert venues, movie theaters, churches, music lessons, art classes, dance class, junior sports leagues. Some of this had to do with being told my child was not welcome, and some had to do with her inability to participate, sit quietly, pay attention, or perhaps my unwillingness to endure the stares and comments of well-meaning people who thought I simply had no control over a three-year old child.

We were desperate to find a way to “fix” her so we could rejoin life in our former reality. In our new life, her existence felt mostly tolerated, her experiences dramatically restricted, and her future certainly seemed bleak. The burden rested squarely on her family and specialists to get her back on track.

No longer envisioning her first day of school, her prom, graduation, college and marriage, I was instead learning about mysterious agencies and services that only existed in this strange new world. We became polyglots in many new languages – funding silo-ese, intervention jargon, doctor speak, ESE-ish and person-first-disability-advocacy talk. Our speech became unintelligible to our former compatriots. Those who stuck with us did so because they understood the language of the heart, which presents no barriers to communication.

Agencies, systems, services, organizations all blended together in a maddening soup. Which phone number leads to clinical services, which leads to funding information, or which leads to parent training? I’m sure I called some places two or three times. I can’t remember how many times I heard, “But that’s not what we do.” It took quite a while to understand, from the organizations’ points of view, that their missions, funding and service mandates were precisely defined by their administrative, funding source, or legislative overseers, and it wasn’t the person on the phone’s fault that he or she could not fix my child, starting tomorrow morning.

After countless phone calls, workshops, conferences and meetings, I finally assembled a map of this new universe.

My daughter worked her way through her new world effortlessly. Those around her scrambled daily to figure out how to smooth her path so that she would never know she was not part of the brightly lit, happy little world from which we had been summarily dismissed.

Through luck or grace, she managed to draw to her side the best of the best in all of the specialized professions. She miraculously found her way across the force field into some beautifully lit rooms from that other place, and from there, managed to draw even more wonderful people around her.

One of the greatest, most profound changes that took place in my own worldview came from one of the organizations I called early on, but set aside because they “didn’t do that” when I asked about direct interventions. This was the Center for Autism & Related Disabilities (CARD) at USF.

By chance, I ran into a CARD staff member at a workshop I was attending about 18 months after my initial contact with the organization. The staff member asked how things were going, and I said, “Okay….” She sensed the implied “but”, and thus began an enduring collaboration and friendship. Over the course of several home visits, quite a few community meetings, and many phone calls, I learned from the CARD consultant that my child was intelligent, funny, had tremendous ability to learn new skills, and most of all, that she was not “broken.” I began relating to my own child in a very different way.

My conversations with teachers and other providers changed from a desperate tone of “somebody has to fix my broken child” to “how can we work together to help each other give my child the supports she needs to participate more fully in the community?” Her school worked collaboratively with CARD and others from the university to learn more about positive behavior support, which at the time was a fairly new concept. Together, we created visual schedules, choice cards and other tools to help reduce challenging behaviors and increase her ability to understand and communicate with others at school and at home.

I began to see CARD in a different light, in terms of its long-term value in the community. Eventually, I became employed at CARD, working in the resource office. The hard-working consultants and other staff members are some of the many silent heroes of our time. Their work is not always something that makes a big splashy difference overnight (though sometimes it does – remember the Not-Too-Haunted Hallways event?). However, a steady, faithful commitment to the core values of community capacity-building, inclusion and quality of life does make a difference over the long haul. It changes how people view our children and adults with disabilities such as ASD. It changes how libraries, zoos, museums and hotels perceive our families. It changes how welcome students are in regular education classrooms. It changes how employers think about the people they might want to hire when filling positions, or how they relate to employees facing challenges of raising children with ASD and other disabilities.

Children being diagnosed with ASD today are coming into a very different world. There are many more options and supports, and it is becoming more possible for families not to feel as if they have been booted out of their own lives into an alternate, far less desirable reality.

Autism has become a word almost everyone has heard — a diagnosis attached to someone related to, or known to, almost every person you meet on the street. Places in the community that did not seem to welcome our children now approach CARD to ask how they can become “autism friendly”. More students with disabilities, including ASD, are being included in regular education classes, after-school programs and junior sports leagues. More programs are being designed to help young adults with ASD successfully attend college or become employed in competitive, meaningful jobs. More and more, people are thinking about long-term, big-picture changes we can make to help our children and adults with ASDs live fully included, meaningful and fulfilling lives as part of the community.

Without a sound or much fanfare, the illusion of a sad, dark, separate but parallel universe is melting away to reveal to everyone that individuals with disabilities never were “broken”, or truly “other”. We all belong to the one and only universe. Our children, too, have gifts to offer and challenges to overcome.

This is a two-way realization. In fact, it seems that people in that brightly lit, smoothly-moving “other” universe always did want to reach out, but until recently, did not know how.  Increased outreach and awareness have shown there is help, and where to find it.

So – to the unsung heroes of CARD and the many other organizations working every day to raise awareness, build capacity, and fundamentally change the (one) world in which we live – thank you!


Jean MacNeill

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