I will never forget a train ride I took years ago with my son, Luke. Unaware that he was on sensory overload, my few moments of maternal calm were shattered when a man took the seat next to Luke. A seemingly benign incident catapulted Luke into a frightening response. Luke’s high-pitched, relentless shrieks pierced the commuter train, ricocheting through the silent cars of weary executives, and I felt the condescending eyes of strangers and friends judging the mother with her unruly child. The memory still evokes the painful realization of how Luke’s issues isolated us.
Despite my extensive experience with Special Needs children, as a parent I was unprepared for how utterly alone I would feel in this journey, how all consuming this life would be.
Many years were spent sequestered in a hermetically sealed house to ward off untenable noises. Anything but predictable, life was laced with temperamental outbursts, unexpected seizures, early intervention programs where hopes were lifted and simultaneously dashed, the perpetual hunt for appropriate schools and programs, the lone house on our block where the short bus stopped. We never left home without Plan B, rarely venturing out as a family of four.
Heartbroken, I helplessly witnessed my sweet son turn despondent, seeking solace behind a closed door, isolated, floundering in a world not meant for him. The isolation was oppressive. Left to our own devices, we, the high-wire act, maintained some semblance of normalcy in circumstances that defied normal.
The shattered vision of idyllic family life was replaced by the course of our uncharted journey, adjusting to and managing whatever distress presented itself. While cradling him with promises that life would not always be this difficult, this lonely, this inconsolable, I silently wondered how that might be.
Somewhere along the way, his developmental disabilities label fell by the wayside, supporting a family mantra: labels are for jars. While it qualifies him for services he deserves, he is first and foremost my son whom I fiercely love, whose life is complicated by his diagnosis but not defined by it. Luke’s heart of gold, interests, intellect, sense of humor, curiosity, and compassion eviscerate the label that both helps and plagues him. Luke’s beacon was the Westchester Exceptional Children’s School, a haven for children ostracized from activities most take for granted. Luke soon had a growing network of friends. He thrived in the unconditional love from staff and students, transforming from the shadow of a boy to a confident, ebullient young man.
Graduating from WECS is a hard act to follow. After finally belonging to a kindred community, engaged in the rigors of academics, job training and independent living skills, entry into the world revealed paltry choices. Familiar territory notwithstanding, navigating a world not meant to support him was terrifying.
Luke wants what we all do: a job with meaning and purpose, a social life and housing. No different than any parent, I fervently hope Luke’s dreams come true.
But that is easier said than done. Well-intentioned programs lack imagination and creativity.
Images of individuals confined to rows of empty tables or engaged in mindless activities in windowless rooms haunt me. Incredulously these programs had waiting lists; the sense of dread I felt for Luke’s future mounted. I was convinced life as we knew it had to change.
When Luke’s brother was younger and stymied by a problem, our prompt to incite change was, “Problem?” “Solution!” This saying turned much of my angst into quiet confidence as I realized implementing a new perspective for real change wasn’t any more complicated than applying a solution — even if I couldn’t see it in the moment.
“Mother Teresa said, ‘Never worry about numbers. Help one person at a time and always start with the person nearest you.’ That I could do.”
Mother Teresa said, “Never worry about numbers. Help one person at a time and always start with the person nearest you.”
That I could do.
Relying on moxie, I gave Luke my word and appointed him the entrepreneur of “Cultivating Dreams,” an enterprise born of the talents, passions and interests of these vital young adults. The core areas of concentration include: continued education, employment, independent living skills, recreation, socialization and community interaction.
Cultivating Dreams and those who have tenaciously worked to bring it to fruition are bursting with ways in which our enterprise can impact significant systemic change. Mostly, we pledge to support individuals and families in ways that work for them. But we are often left at the mercy of an inefficient and unwieldy system, where there seems to be no recourse but to wait, wait and wait some more.
Entrenched ideologies that adults with developmental disabilities somehow are not deemed worthy of a life with equal opportunity are some of our greatest challenges. The very systems purporting to support those with disabilities are the ones that have presented the greatest obstacles.
Statistics are staggering. One in five families are impacted by special needs; data hasn’t caught up with reality and soon those figures will be revised.
Discrimination against those with disabilities outdistances every other. Woefully unprepared to serve Luke’s generation, there’s a tsunami behind his, some experts rightfully describing this as a crisis of epidemic proportions.
Setting aside the lack of employment, housing is a critical need with many states declaring moratoriums. For we parents, these are agonizing facts, each of us virtually left on our own to figure out what will become of our children.
“Setting aside the lack of employment, housing is a critical need with many states declaring moratoriums. For we parents, these are agonizing facts, each of us virtually left on our own to figure out what will become of our children.”
Meanwhile, young adults across our nation are waiting, isolated and alone with no prospects for meaningful engagement in life. These are all our kids. If they have the courage to make their way in this unfriendly world, surely we have the courage to ensure theirs is a life of purpose.
Luke and I recently attended an event for an organization dear to us. A portion of the evening was dedicated to the long-awaited launch of Cultivating Dreams, the first phase of our long-term vision. Luke circulated the crowded room, shaking hands with strangers, helping himself to refreshments, socializing with friends, posing for photographs and having the time of his life. I watched in wide-eyed wonder, grateful for how far he has traveled from that distraught train ride.
Luke’s bliss is the only motivation this lucky mom needs — he is happier than I’ve ever known him. A close friend asked, “So, you get up every day and do it all over again? You keep going even with the challenges?” Nodding, I quietly said, “Yup. I made a promise to Luke and I always keep my word.” As he shook his head in wonder, I added, “If I don’t do it, who will?”