My journey into motherhood took an unexpected turn with the birth of my son Austin who was born with a developmental disability. Developmental Disabilities include Intellectual Disabilities, Autism Spectrum Disorders, and Down Syndrome, amongst others. Austin was born in the year 1988, and my understanding of Developmental Disabilities was limited to my experiences in elementary school, where Special Education students were so isolated, so removed from the general population that we rarely saw them.
After Austin was born, our family was catapulted into the world of Developmental Disabilities. His sister, born in 1990, was born neuro typically. It was hard to juggle parenting a child with exceptional needs while still caring for another child whose needs were far different. At first, it was hard trying to find things they could do together. Then it became hard to find things that he could do at all. It wasn’t as hard to balance them when they were incredibly young, but by the age of two, she’d already surpassed him developmentally. As our children grew older, our family of four experienced profound challenges and crushing disappointments, as well as our share of joy, adventure, and love. Our victories, however small, were hard-fought and immensely gratifying. Little did I know that our biggest, most challenging adventure had yet to begin.
After Austin graduated from high school his world became much smaller. Austin’s intellectual range falls between 4 and 10 years old- academically, his intellectual function is very low. He cannot read, write, or perform even simple math. Yet he is funny- a total goofball. He is kind- he holds doors for the elderly and worries incessantly about homeless people. He is a lover, a friend, a Rainbow Sprinkle Donut in human form. Austin is inherently lovable, but not inherently employable. Job prospects were grim, and peer socialization, community involvement, and a purposeful life evaded him.
In an effort to expand his world and offer him a life outside of the of our house, I visited a few adult family homes in our area. I was appalled. They did not provide the lifestyle I wanted for Austin- not even close. I left in tears. Boys Next Door Adult Family Home was born out of that disappointment and frustration. Boys Next Door opened in May, 2012 and is at capacity with six residents. Our young men range in age from 22-32. Three of these men have jobs in their community, five are members of their local Special Olympics team, five volunteer at the local food bank, and five are members of the YMCA. They are all happy and living full, purposeful lives- my dream. We recently purchased a new house for Boys Next Door and are enjoying settling into our new home.
Housing aside, another significant barrier for people with Developmental Disabilities is transportation. Community integration requires community access, and access to transportation is especially difficult for adults living with Developmental Disabilities. While the Americans with Disabilities Act made public transportation infinitely more accessible for Americans living with physical handicaps, Developmentally Disabled Adults face challenges not related to physical barriers alone. Adults with Developmental Disabilities are often incapable of navigating a bus route or traveling alone. Many cannot read, and many are vulnerable to predators or other dangers.
While shuttle services do exist for people with Developmental Disabilities, many are denied shuttle services based on a so-called “Functional Test”, in which the Developmentally Disabled individual views a simulated bus ride on a computer module, and is then asked to navigate a very short, basic series of hallways. If the individual navigates the hallway correctly, they are denied services. Services are denied based solely on this test, without accounting for personal history or input from guardians, who are acutely familiar with the Disabled Individual, their needs, and their level of function.
Reflecting on the infinite number of challenges facing Developmentally Disabled individuals and their families can feel overwhelming. We pick our battles, and we focus on the most pressing and immediate challenges. While transportation challenges still exist even 16 years after the passage of the ADA, housing still evades many. This, I believe, is still our most pressing need, and I am proud to be part of the solution, however small.
While Boys Next Door has undoubtedly improved the livelihood of our individual residents, the benefits are just as great (if not greater) for their families. Families of disabled children and adults desire many of the same things as “typical” families. We also want vacations and sports teams and barbecues, and-eventually- space and independence. We want our children to thrive, but we don’t want to be run ragged in the process.
And we need help. The journey has not been without its ups and downs. We care for some of society's most vulnerable citizens. While this is an honor, it is also a challenge given the inadequate funding support from the state.
There are so many barriers still facing people with developmental disabilities and the families who love them. I'm happy we've been able to knock down a few.