Posted by Karen O'Hanlon
It was 1957. I was eight years old, and attending my friend Patty’s birthday. I remember the two of us were bobbing for apples when her brother joined us. I had never seen a kid with Down syndrome before. Bo looked and acted very different from other children I knew, and I had a ton of questions for my mom on the way home: Why hadn’t I ever seen Bo before? Why did he look that way?
My mother told me that Bo was so different from other children that he couldn’t go to school.
"Kids like Bo can’t learn,” she said, “so they are just kept at home. They don't usually go out in public.”
That’s how it was when I was a kid – children with obvious disabilities were hidden away from view. Mom didn’t explain that in those days Down children had a short life expectancy (only about 12 years if they were born in 1947), or that they would probably be institutionalized for most of their short lives.
My mom’s tone was matter-of-fact, but something about Down's felt very tragic to me. It was so sad that Bo wouldn’t have friends from school, that he wouldn’t get to do all the things that school and friends and going out provided. No school performances. No hanging out in back yards on summer nights with neighborhood kids, listenining to ghost stories. No trips to the state fair to ride the ferris wheel and the bumper cars. No overnighters at your best friend's house. With each addition to the list, Bo's life seemed more and more sad and limited.
Years and years later, after I had taught for quite a while, I took an administrative job in special education. Part of that job was to visit preschoolers and help get them established in the support programs provided by my school district. This is when I first met Chad and his mother.
Officially I was there to evaluate Chad's adopted older sister. She had special needs and was enrolled in a Head Start program. I thought she might qualify for some district-sponsored speech and occupational therapy services.
But in the course of meeting with mom and evaluating Chad's sister, I got my first introduction to how radically things had changed for Down syndrome kids. No longer were children with Downs hidden away, isolated from learning. In fact, the emphasis had switched to emphasizing early intervention for Down syndrome babies.
Chad was a relatively quiet, not very active ten month old when I met him. He was sitting on a blanket placed on the living room floor. It surprised me that he seemed more interested in me than any of the toys surrounding him. Peering at me through almond-shaped eyes, he watched attentively as mom and I talked. I didn't expect him to be so responsive when I spoke to him, obviously listening and waiting. When I picked him up, his legs and arms had a soft, spongy feel. Mom explained that low muscle tone was pretty typical with Downs. This was why he didn't crawl or walk yet. Any stimulation had to be brought to him, since he couldn't explore on his own.
A pediatrician had most likely made a referral to the local Early Start Program soon after Chad’s birth. Early Start is for 0-3 year-olds and supplies in-home, early intervention services by sending a therapist or teacher to work with a developmentally disabled child. But mom had also done research. She knew that medical advances would allow her son to live a much longer life (60 years for more than 40 percent of those afflicted), and she also knew that specialized early intervention could drastically change the quality of her son’s life. So she was dedicated to procuring the best services she could for her baby.
For me, talking with mom was an eye-opener. Early education for the general ed classroom was my area of expertise, and I was still taking night classes to finish up my special education credential. Still, I was already working in early intervention and doing everything I could to train myself.
Mom told me how the occupational therapist came twice a week to work with Chad and did a variety of activities. I found many of the activities interesting, but the one that most intrigued me were the brushing techniques. Mom demonstrated how she used a brush to sweep across the palms of Chad’s hands and the soles of his feet for 10 minutes, three or four times a day. How come? Because Downs babies frequently have immature nerve endings in certain parts of their bodies. This occurs frequently with their hands and feet, and since all infants rely on tactile information to develop physically and intellectually, it is important that babies have mature nerve endings to process information. Although experimental, the sensation of the brush bristles is thought to aid nerve ending development, leading to better tactile sensory input, which in turn leads to better development of the brain. The therapist recommended “brushing” to improve Chad’s overall development.
As a child, I was struck by the social tragedy of Downs. As an adult, I was amazed at the energy being directed towards making sure people with Downs lived the fullest life possible. How did we go from hiding Downs kids away to providing this kind of specialized early intervention? When I met Bo, the cause of Down syndrome hadn’t even been identified yet. Then, in 1959, a French researcher named Jérôme Lejeune discovered that Downs babies have an extra chromosome that causes the condition. Medical advances became key in treating their heart abnormalities and other physically threatening conditions, thus lengthening the life span of these children.
Attitudes also began to change. President John F. Kennedy, whose sister, Rosemary, was mentally disabled, initiated a series of steps that revolutionized perception about the treatment of mental retardation. In 1963, these culminated with the passage of two pieces of landmark legislation. The first earmarked funding for states to improve mental retardation and prevention programs. The second set aside money for research into the causes of mental retardation. The Civil Rights Movement also played a role, and Special Education services became mandatory in public schools in 1975. In recent years, a lot of criticism has been leveled at the public school system. Some of these criticisms are fair and some are utterly baseless. But everyone seems to ignore how much we've grown, and I think that our increasing attention to early intervention is one of our great successes.
Bit by bit, life has been improving for Down syndrome individuals. I don't know where Bo went in life, or what he did. But I can't help but feel he was unlucky to have been born in the late 1940s. Chad, on the othe hand, was a lot more fortunate to have been born in the 1990s. In fifty years so much has changed. I'm amazed to hope for what the next fifty will bring.