I never identified with the NO FEAR bumper stickers because I've always been scared to death of something. When I was young, I was afraid I’d never be able to buy all the stuff that was needed to be an adult. All the pots and pans and shoes and suit coats and coffee tables and stuff. When I was a teenager, I was afraid I’d never be able to do what was necessary to have a girlfriend. Or a career. Or a house. After I got married, I was afraid I wouldn’t be able to make enough money to do all the cool stuff I had always wanted to do. But the minute Mike was born, I had different fears.
Mike was diagnosed with tuberous sclerosis. He suffers from severe autism. He will never be able to take care of himself. Most likely, he will never have a job, cook a meal, or have a conversation about politics. Michael turned sixteen two weeks ago. He’s six feet tall, two hundred and ten pounds, about ten pounds heavier than I am.
He still gets out of bed when we say it’s time to get out of bed. He still takes a bath when we say it’s time to take a bath. But I’m afraid that one day, he’ll realize that he doesn’t need to do what we say anymore. I’m also afraid he might hurt someone. I’m afraid he might be taken away from us and placed in a state-run home, shot up with drugs, and parked in front of a television for the remainder of his life. And even if we can handle him for another thirty years, when we’ll be in our eighties, if he’s not taken away because he hits someone or escapes from us and runs around downtown Iowa City naked or something, I’m afraid of what will happen when Deb and I grow too old to care for him anymore; to play with him in the yard; to take him for walks in the woods with the dog; to go to the beach with him, eat dinner with him, lie down with him at night and wander off into sleep, cook waffles for him in the mornings, take long drives with him. I’m afraid what will happen after Deb and I die. I wonder who will take care of Mike then.
These are a few of my fears. And I wish I didn’t have them. I wish I could buy a bumper sticker or maybe get a tattoo: NO FEAR, and all of it would be banished. But bravado won’t banish these fears.
In a few years, when Mike turns twenty-one, there will be no state-run educational program for him anymore, and we’ll be on our own. If we do nothing, he will eventually be sent to a home somewhere. I know that homes for kids like my son are necessary and there are thousands of good and worthy people who have made it their life’s work to care for people who can’t care for themselves. And these people should be celebrated and held in high regard by our society and offered continuing education and paid a good salary with incentives and stock options and given healthcare benefits and vacation time. It’s a nice dream, but in Iowa, the going wage for a direct service provider is between eight and eleven dollars an hour. No benefits. No vacation. Both my sons have worked for Mayor’s Youth in Iowa City as direct care providers for a short time. For them, as for most direct care providers, the job provides stop-gap employment. It’s not hard to understand why most people quit. When you place the demands of the job on one side of the scale and the available compensation on the other, the two don’t balance out.
For the time being, during the fall and winter months, we send Mike to school every day. He’s in school for six hours and then he comes home. We’re grateful for the people who teach him. Mike has allowed us to be exposed to generous and kind people. One of his teachers, Michelle, was Mike’s favorite. She was kind to him and, more importantly, wouldn’t relent in her demands that he learn to zip his coat and wash his hands and say “Hello” and “Good bye” and “Please” and “thank you,” which were great leaps. Another teacher, Alexandria, took Mike on walks across the Iowa prairies and brought him to art museums and rock climbing walls and painted pictures with him. But these two teachers, like all teachers, moved on. They had their own personal fears to overcome and their own goals to achieve. But in these things, Mike is left behind.
If we do nothing, there will come a time when we have no control over what happens to our son. We will leave him behind the way everyone else does. And people will be paid a low wage to feed him and bathe him and switch channels for him. But who will talk to him and wrestle with him and tease him and sing songs to him and demand interaction from him and, in short, love him like a son? Mike will be cared for. But he will also be left alone.
If we do nothing, these are the things that will most likely come to pass. Of course, not all teachers are like Michelle and Alexandria. One of the aids hired to teach our son was, by chance, caught on tape winding up and slapping him in the face. Although this incident was difficult and hurtful, it’s also easy to understand. Children like my son test us.
If a child shouts constantly and doesn’t know how to use a toilet and paces frantically all night long and occasionally becomes frustrated and violent due to his inability to communicate, how difficult would it be for a care provider to maintain a calm and loving demeanor? What if, due to the child's inability to communicate, everything done in the child’s presence is done in complete anonymity? What are the chances that this child will be abused in some form at some point in his life? It doesn’t take research and statistics to determine the answer. The chances stand at one hundred percent. This child will suffer abuse.
For the past year or so, Deb and I have been meeting with five other families who have children with varying degrees of intellectual disabilities. Our decision to band together and build a communal home for our children comes less by choice than necessity, as doing nothing is not an option. If we are to overcome our greatest fear, the fear that our children will be left behind, in the end, without the love of their families and friends, we must do something now. Fear, it turns out, has been our ally because it has brought us to this unavoidable conclusion.
A common necessity makes for a strong bond. Together, we have decided to form a nonprofit corporation. We will buy land. We will build a village. We will plant a garden. We will cook and sleep and learn and grow as a family, all of us together, parents and children and grandchildren, a continuum of support and advancement, a stable place for those unable to do for themselves, a place that will exist long after we are gone.
We make this decision, if it can be called a decision, because there is no alternative. We must build a home for our children where they will be loved and protected from abuse and led toward some greater understanding of the world, of what is possible to be brought forth through the human mind and spirit. And we’re not alone. Although we conceived of this idea on our own, we have since discovered that there is already a community of people who are starting up cooperative homes like the one we’re in the process of organizing all around the world.
Just as the rest of us must do, our special needs children must discover what it is they are capable of. And it's our responsibility, as parents, to provide a place for them in which they can do more than merely exist. We need to provide a place for them in which they can live.
I know it sounds like I’m running for office or something. I’ve written a few flowery-unicorn-fluffy-cloud sentences that need to be brought down to earth. But we will bring them down to earth because it’s what we need to do. We will do more than have a flowery vision. We will do something far more worthy. We will work to secure a future for your children. And it is this work that will banish our fear.