I was still in a fog, feeling lost and unsure as I shuffled into the large hall filled with anxious parents. I didn’t know a soul but I urgently needed help. I was eager for any information I could get – not only because I was adjusting to a sleep-deprived life as a rookie father, but because I was grappling with the harsh reality that my sweet, innocent, beautiful baby daughter was born with a developmental disability that would incontrovertibly alter the rest of her life.
I recall hearing tough questions from older parents who now had teenagers or young adults: what would happen after high school? What kind of social lives would their kids have? Who would care for them once their parents could no longer do so, and where would they eventually live? What struck me most vividly were not the questions themselves, but the desperation I heard in the parents’ voices. I remember thinking to myself, ‘thank God I don’t have to worry about those things’. At the time, they were easy to dismiss because I had more pressing concerns; my daughter Megan was only a few weeks old. Fatherhood was still a new concept for me. Those big issues seemed too intangible, too distant…too much. They could wait.
Those uncertain, clumsy steps as a new father quickly gave way to steadier footing. For the first five years of her life, Megan benefitted from the support of various specialists, therapists, doting grandparents, and a network of friendly playmates and amazing caregivers. I felt as though I had unknowingly stepped onto a conveyor belt, and was gliding towards some sort of peace of mind. What became clear to me was that the infrastructure to help infants and young children with developmental disabilities works very well. This support provided reassurance and hope because Megan was being given all the necessary tools and opportunities to help her reach her full potential. By the time Megan began high school, I remained content with the familiar path; Megan still seemed to be thriving amid a caring support system of teachers and classmates, and hope still remained high that her skills and potential would continue to develop.
In the blink of an eye, twenty years went by. Megan graduated from high school. Now what? The looming weight of those two words silently gnaws at me and keeps me awake at night. It’s as if my trusty conveyor belt, which had lulled me into thinking that everything was alright, abruptly and unceremoniously deposited me at the edge of a black hole. What happens when the familiar support system is no longer around to provide support? Suddenly, I’m back in the same hall I walked into over twenty years ago. Those intangible questions that I couldn’t bear to think about are suddenly all too real. Now that Megan has exited from the other end of the system after two decades of coordinated care and support, is she now doomed to a life of disconnected, unchallenging day programs, sporadic get-togethers with acquaintances or worse yet…a lonely, solitary life spent in her room watching television and playing video games?
After so many years of relatively smooth sailing, it’s shockingly easy to find oneself paralyzed by panic. Why? Because the onus falls heavily back onto parents, only this time without the skills nor the infrastructure to which they’ve previously grown accustomed. School-organized outings, social activities and after-school programs are gone. Continuing education tailored to individual needs is almost impossible to find, and private therapy to help with on-going skills development is prohibitively expensive. Moreover, the few programs that do exist do not provide long-term solutions. There’s a psychological toll too. As earnest parents, the high hopes we had for our children have fallen considerably short of our dreams. Many parents are disillusioned or burned-out, and the cute kid has grown into a young adult that people do not have the same time or patience for. All of this can be a huge source of debilitating stress for parents with inflexible work schedules who are trying to make ends meet while trying to do the most for their children. It’s easy to see how a familiar and tragic path unfolds where aging children stay at home with aging parents until a crisis forces a devastating disruption to everyone’s lives.
The only way to change this inevitable path is with a change of attitude. As a young child, everyone talked about how Megan could reach her full potential. Now as a young adult, too few talk about how Megan can continue striving towards her full potential. I say this attitude provides a disservice to Megan and to other young adults with developmental disabilities. Everyone keeps learning throughout their lifetime, albeit at different rates. To me, the best approach is one where all young adults continue striving towards their full potential with the belief that everyone has something valuable to offer. I believe that individuals with developmental disabilities can be contributing members of society, providing meaningful assistance and services.
We cannot and should not accept a system that offers inadequate support for critical therapy and day programs, nor one that does not provide forward-thinking career paths or reassuring assisted-living arrangements for our children in need. As a parent unwilling to accept the status quo, I want a support system that further taps into individual potential, and brings joy, dignity and meaning to our kids’ lives – one that not only provides peace of mind to them, but also to their parents, siblings and extended family. Instead of being fearful, I want to be hopeful about the positive changes that have occurred over the last twenty years and be inspired by the opportunities – the most significant of which is how the internet offers the power to bring global communities of like-minded people together along with their ideas and insight. I believe that viable solutions exist – there just needs to be a coordinated effort. I believe that even though some days feel bleak, there is a caring network of people who are willing to help as we forge towards a common goal.
Can a parent have complete peace of mind when it involves a child with a developmental disability? No. But knowing where we want to head…pointing in the right direction is a start. Sharing information and engaging in discussion slowly moves us toward our goal. The goal? To work together and create a better, hopeful future with meaningful work and volunteer opportunities for our children, one that demands dignity plus a vibrant and enriching social network with caring relationships, and plenty of opportunities for personal growth and fulfillment. It may take some time but it sure seems like we’re heading in the right direction.