Taking the Long Road

Photo:  Doug Bradley

Last week I attended a local forum on intellectual and developmental disabilities, co-hosted by State Senator Julie Morrison, the woman who set me on the path to my current job in local government.

Four years ago, when serving as West Deerfield Township Supervisor, Julie asked me to join a committee on a grant program the township was initiating to help its disabled residents gain better access to the community.  Participation on that committee eventually led to my appointment, then election, as Town Clerk, a position I’ve enjoyed for over three years.

While at the forum to represent the Township and its grant program, I was also there as a parent.  It was an interesting perspective.

The forum focused on housing, employment, and helping people with disabilities achieve their individual goals, providing information on programs and services available to assist in these areas.

Most of the information I’ve heard before, many times, having attended countless similar workshops and presentations over the past 20 years.  Listening to a social worker summarize of the maze of federal and state resources  — and knowing first hand the red tape involved in securing those resources — it occurred to me that repeated exposure to these explanations is necessary before they sink in and begin making sense to parents who are bewildered and overwhelmed by the whole confusing process.  At least that’s the way it worked for me.

It took several years just to wrap my head around the unwelcome reality that my son would one day require such services.  Even as I started absorbing bits of information, acronyms like “PUNS” and “CILA” and “SSI”, there remained a self-protective film of denial across my consciousness, allowing me to cling to the fantasy that one day he’d grow past the need for these frightening, complicated systems, and it would all simply go away.

Slowly, fitfully, though, we accepted that Daniel would most likely require residential care some day, and began researching his options more than a dozen years ago.  As my friends in the special needs community understand all too well, finding and securing crucial funding and services for disabled persons is a long and complicated journey requiring expert, experienced guidance, and very often legal counsel.

In retrospect, we were fortunate that Daniel’s level of disability was profound enough to secure the services he needed without protracted, expensive litigation.  Even with extensive modifications to the special education program within our home school, our district acknowledged that they could not adequately or safely educate him.  Just over three months after his first day of sophomore year in high school, Daniel moved to a residential school for developmentally disabled children and teens in Wisconsin.

Fortunate, of course, is a relative term.  While I’d accepted that one day Daniel would need a higher level of care than we could provide at home, I didn’t expect that day to come when he was just 15.  I imagined his transition as a young adult, when he’d be “ready” to leave home and begin building a semblance of independent life.

But those are regrets for another blog.

What I didn’t anticipate last week was how painful listening to descriptions of various programs available to disabled people now would be.  As the parent of a child who desperately needs such services, it should have been a positive, encouraging experience.

And in many ways it was.  It was gratifying to learn of the job training, skill building programs now available to foster independence, the innovative housing opportunities emerging in response to the fast-growing population of adults who need various levels of assistance to live their fullest lives.

As the parent of a profoundly disabled young adult, I was inspired by the room full of professionals dedicated to enhancing the lives of people like my son, and the other parents who share my quest for the best lives for their children.

But as the parent of my profoundly disabled young adult, it also broke my heart, knowing that at his current level of ability, most all of the programs described — even those painstakingly facilitated, adapted, and governed by one-on-one care — remain beyond his reach.

There was a time when these programs were what I aimed for: modified, humbler experiences, but still within the “second-best” realm of what my friend David Royko so aptly calls “hopes adjusted downward.”

These days, however, his behaviors bar him from participating in even the most carefully controlled community involvement, a far cry from the programs described, which offer meaningful work and social opportunities.  As grateful as I am for the strides being made on behalf of people like my son, my heart is heavy that he cannot, at this stage, participate in them.

I learned I wasn’t alone in feeling this way.  During the presentations I took a break for a few minutes, and met in the lobby an acquaintance whose nephew is affected by the kind of severe autism that affects my son.  Her eyes were brimming as she confessed that she couldn’t take hearing it all, aware that her nephew would most likely never partake in the programs described so glowingly, so positively, yet still beyond the constraints of his brand of autism.

Perhaps selfishly, I was comforted to know I wasn’t alone in my meloncholy.

Ironically, my favorite presenter at the forum was the man who’d squashed my hope of bringing Daniel back closer to home when he turned 22 and entered the adult disabilities system.  The intake coordinator for a major network of Chicago-area residential facilities, we’d consulted him over two years ago, before we made the difficult decision to keep Daniel in Wisconsin, where services outpace those in Illinois two to one.

He told us the truth two years ago: that despite Daniel’s demonstrated need for residential housing, and thus the likelihood of his receiving some of the scant funding available from the state of Illinois, he’d be at the bottom of the list of potential clients when petitioning facilities for his placement.  His behavioral history would always precede him.  With waiting lists years long, the most desired facilities can pick and choose their clients, and few would be eager to pick my son.

It was crushing news to hear.  Yet it was the beginning of a painful but necessary process of letting go, relinquishing a dream I’d held dear for six years, and looking beyond to what was available now.

Attending the seminar brought home again how deeply Daniel’s autism has impacted him, how limited his life remains even within the disabilities community.  But it also reminded me how far we’ve come.

Recalling those early days of despair, those frantic, panicked moments as I tried to absorb the onslaught of information and bureaucracy, of endless forms and questions and boxes to be checked, I’m able to appreciate that I’ve made it this far.  It’s not where I hoped to be, but the road still lays before me.

That’s the bad news, and the good news, as well.  The journey is far from over, but I pull strength from the miles I’ve already travelled.

It’s a long road, indeed.  But I’m not walking it alone.

For information on West Deerfield Township and its Accessibility Grant Program click here.