For parents of disabled children, every “routine” milestone reached is a miracle, bringing with it excitement, joy and, at least in this case, a small degree of trepidation. And this particular miracle will seem unusual to many readers because of its source. It was planted by the social activism of special-needs parents in the 1960s and 1970s. Its roots grew from special-education legislation. And its cultivation can be attributed in large part to the hard work and dedication of publicly funded educators, as well as parents and others who care. It is an example of the good that can and does spring from legislative policymaking and government spending.
Ben is a smiling, energetic, funny little boy (also quite handsome according to this unbiased source) who cannot walk, cannot sit up by himself, cannot reach his arms very far, cannot feed himself and can speak only in difficult-to-understand single words. His disability was caused by a congenital defect; a small “drain” in his brain is too narrow, resulting in a condition commonly called hydrocephalus or “water on the brain.” Doctors gave him an auxiliary drain (a “shunt”) when he was 6 days old, correcting the underlying problem but leaving Ben with brain damage that occurred during pregnancy.
Trying to be a good parent–a challenge with any child–to a son who cannot communicate or learn the way typical children do can be a very frustrating and isolating experience. Not only do my husband and I have to attend to and contain our own feelings of guilt and grief; we also need to find ways to teach Ben things that typical children learn through their own physical independence. We are enormously proud of our Ben, but his birth drove home the reality that no matter how emotionally or financially independent you are, there are some challenges you cannot face alone.
Enter the special-education system, mandated by state and federal law. Upon diagnosing Ben, doctors referred us to an early-intervention center (serving children from birth to 3 years) in our home state of Massachusetts. We were referred to another one when we moved to New Hampshire several months later in order for my husband to take a new job. These centers are staffed by some of the most creative, bright, warm and supportive people I have ever met. They helped us learn how best to teach Ben, how to motivate him and how to help him explore the world around him. Just before he began school, Ben’s case manager, an occupational therapist, found a piece of equipment that helps him “crawl”-supporting his upper body on a sling so that his stronger legs can push the wheels attached to the sling’s frame. Ben has begun to have the independent mobility that we had only dreamed of.
Ben’s preschool, run by our town’s school system, is building on Ben’s experience with early intervention. Although it has been some time since the school has had a child with Ben’s level of physical disability, the teachers and students have truly welcomed him to the school, a welcome that does not come cheap. Like all children, Ben needs a happy family life, a roof over his head, clean and appropriate clothes, good nutrition and caring teachers as prerequisites to success in school. But Ben’s special needs don’t stop there. He requires a full-time classroom aide to help him move, play and eat with the other children. He and some of his classmates receive physical occupation and speech therapy so that they can reach their maximum development. The school will need to purchase special equipment. In a time of dwindling resources, educators, politicians and parents of typical children may well ask whether the expense is worth it.
I can answer with an unqualified yes. Obviously, it’s worth it to my family–especially to Ben. No child deserves a disability and Ben should be able to dream of being anything he wants to be, just as we encourage other children to do. But it is also worth it to Ben’s community and especially to his peers. Ben has the potential to be a citizen in the true meaning of the word, very possibly a self-sufficient one who will not, as an adult, need to rely on the government for all or most of his financial support. But more important, Ben will provide his peers with a window to a world few of them would otherwise see, teaching them acceptance, tolerance, perspective and creativity. He may also turn out (and I hope this for him more than anything else) to be a best friend to someone who really needs his friendship.
The early reports from preschool are amazing, especially when compared with what Ben was able to do just a year ago. Ben is happy, watching his classmates closely, and, in his fashion, participating in games, singing and story time. The other kids are curious about him, but once told that his muscles just don’t work like everyone else’s, they accept the information and figure out how they can play with him. They are happy that he likes to share his special equipment. The teachers and aides are warm, supportive and, most important, very enthusiastic about Ben.
This small miracle of a routine beginning is not the stuff of made-for-TV movies, where the child walks despite the dire predictions of all the doctors. It is a miracle created by activists through government. And it is a miracle that requires money; without the dollars, the network of professionals who create and develop the information and experience that will cultivate a little boy like Ben into an integrated member of our society simply wouldn’t exist. And it is a miracle that few parents could afford to create on their own, no matter how willing they might be.
Sometimes government spending does make a difference. Sometimes it can create miracles.
