By Judy Horton
We have a friend. We met him when he was confirmed in our church a few years ago. Over the years since 1984, when our daughter Kelly was born with Down syndrome, we have developed a specialized radar that enables us to spot a person with Downs on the opposite side of a packed football stadium on a foggy day.
We were impressed that Matthew had sought out the church of his choice. He is very picky about churches and only will consider the most traditional, thinks our priest is too liberal and has deep suspicions about the Pope, but he happily fulfilled all the requirements for becoming a Catholic and we welcomed the chance to get to know him.
Matthew is impressive. He’s verbally fluent, charming (upon meeting a lady he invariably compliments her on her appearance, kisses her hand, and says, “Enchanté, Madame.”) He’s quite witty and has assembled a variety of astute and funny observations on various aspects of modern life.
We befriended Matthew and he befriended us. It turned out that he knew many residents of Down Home Ranch from when they were in school together, and he enjoys visiting them there. The rock-star reception he gets when he does doesn’t hurt; he loves seeing his old high school buddies and they love seeing him. He doesn’t get many chances to enjoy interacting with his peers.
However, at home in Austin it’s a different matter. We quickly learned that though Matthew has many interesting pursuits and interests, he mostly pursues them alone and unaccompanied. As a friend once remarked, “Nobody got more high-fives in the hall at Anderson High than my son, and everybody claimed to be his friend, but not once—not even one time in four years—was he ever invited to a party, or out for pizza, or just to hang out.”
That pretty much sums up the life of most people with Down syndrome. And that of Matthew.
Matthew lives the dream of the academics and agencies that often determine how and where people with intellectual disabilities should live their lives. He is true to the modern ideal by living alone, having a part-time job, being able to walk to church while close to public transportation to navigate the city. He has a condo in a bustling and trendy part of Austin. He has freedom to come and go. And does. Alone.
At a glance, Matthew is as independent as any other regular guy. But as we got to know him and include him in our lives, we quickly became aware of just how much support he needs and relies upon. And how isolated and lonely he is. Yes, he lives in a regular, typical, normal urban community, but in reality he is segregated from that community. It doesn’t welcome him.
And, despite his apparent independence, he needs help all the time.
Matthew will forget when we are to pick him up for an outing and unless we alert his mom, who lives in the same complex, and she makes sure he’s ready and waiting. Mom maintains his calendar and sees that he meets his obligations and takes advantage of his opportunities. She interfaces with his service providers, medical team, relationships within the family, and with two helpers who show up during the week to help him navigate life’s complexities, such as replacing his cell phone, which he loses on a regular basis. Matthew considers them good friends, but they’re paid to do what they do. Parents of adults with special needs regard those rare souls who simply spend time with their kids because they like them as angelic visitors from the heavenly realms.
Matthew has a good life, as good as it gets. He stays up late at night playing video games and watching movies, so mornings aren’t his favorite time. But he’ll never miss a trip to Down Home Ranch or a good meal.
So, when we’re coming back from visiting the Ranch or having dinner at Luigi’s with his former high school chums he’ll say something like “maybe I should be moving to Down Home Ranch.” His loneliness is palpable, but moving to a place like the Ranch is unlikely.
Most likely he will soon move with his mom to another city, where they will share a house “on a golf course” close to his younger brother, who will look after Matthew’s interests once his parents are gone. He’s not happy about the prospect. Matthew’s already scouting for the oldest, most conservative Catholic church in Houston, and we hope and pray it will be possible for him to become an active and appreciated parishioner.
For now, Matthew participates as a core member in our emerging L’Arche community group, which is in its third year of formation. He’s not keen on moving to Houston, or living with his mother, but as he is close to 50 now and his parents aging, they are anxious to get him situated against the day they’ll no longer be able to look out for him.
Parents all over the country and their adult children with disabilities are facing similar challenges. In reality, ensuring housing, food, and minimal supervision for a person is the easy part. But where is the community that will truly welcome them, and welcome Matthew?