Impact Impact: Feature Issue on Early Childhood Education and Children with Disabilities
A Long and Winding Road:
One Family's Journey Through the Educational System
Reuben was born in 1976, one year after IDEA was enacted – the law that says every child is due a free and appropriate education. Unfortunately for him, he was on the cutting edge of changes that really didn't benefit him to the extent we would have wished, though it has had a lasting influence on generations that followed. While we can laugh at many of the experiences today, at the time it was very hard to accept that less than adequate opportunities were available.
When we brought him home from the hospital, the doctors told us to just love him and hope for the best. He was extremely fragile and not expected to live very long. I carried him in a Snugglie all day and rocked him to sleep each night. We did the best we could. When he was 7 months old, a young woman knocked on our door and said she was here to help. I had no idea who sent her or how she had found me, but I welcomed her with open arms. It turned out she was part of the first wave of early intervention specialists. Diana was a lifesaver to me as I finally felt like I was doing something to proactively help Reuben.
When Reuben was a year old, we moved back to Ohio and started him in an early intervention program. The program was across town, and as soon as we arrived Reuben was taken from my arms and whisked away for up to two hours. He was seeing PT, OT and a speech therapist. I would ask each week if I could go along so that I would be able to continue the activities during the week. Each week I was told that they were the experts and that I should just leave the therapy to them. Unbeknownst to me, parents all across the country were having the same concerns. Gradually the notion of "family-centered care" started creeping into the vocabulary. Ultimately, the early intervention years (birth to 3) and the infant/toddler years (3-5) were very productive for Reuben's development. He grew both physically and intellectually by leaps and bounds.
When he was 4, he was ready for child care/preschool. I called more than two dozen child care centers and was told by each one that they couldn't take a child with a disability. After exhausting our options I decided to start the list again and not say that he had Down's syndrome. The first place I called set up an appointment with me, but when they saw him they started to balk. It was our lucky day when one of the teachers turned out to be very excited about having him in her class. The administrators agreed to try it. It turned out that the teacher had some background in special education. She became an incredible mentor for the others and Reuben thrived in her care.
Things were great for a few years and then we entered the all-consuming beast otherwise known as the public school system. The terminology changed but the difference in the attitudes of the teachers was the most troubling barrier. For the first few years Reuben remained in segregated classrooms except for lunch, which was considered a "mainstreaming" experience.
In 1986, Reuben began attending class in a hospital with just a few children, many of who had Down's syndrome. He received lots of individual attention, loved going to school, and made close friends in the class. However, the school system, in its inevitable wisdom, wanted him sent to a kindergarten classroom for part of the day – he was 11 years old. Administrators, teachers, and parents were upset with me when I argued against it. I felt, and still do, that those early years were the best time for him to learn as much as he could and didn't feel that he would be getting the attention he needed by sitting in a class with age-inappropriate, "typically" learning children just so the school system could say they were practicing mainstreaming/inclusion. At that time, there was not a lot of organization in the process, teachers weren't trained to deal with the special needs of our children, and there was resentment, not just from teachers but also from other parents who often felt that our children were taking time away from theirs. Over time, I came to believe that Reuben would get as much or more out of being "mainstreamed or included" in social settings as he would in the classroom. If other children were able to see him in those situations, it made sense that it would eventually carry over to the classroom.
As it was, he was bused to an elementary school where he literally sat in the back of the kindergarten class with no one interacting with him the entire time he was there. He couldn't understand why he was being taken away from his friends and forced to sit by himself. It was hard for me to understand it, too, let alone to try to explain it to him. Needless to say, it was wasted time for him, and an opportunity for learning lost forever.
Over the years he had some teachers who were great and who could see his potential, but we also had some very challenging and unqualified teachers as well. When he finally went to a regular elementary school – the hospital classroom was closed down – his teacher was fantastic. For the first time we could pick other classes for him to take. Reuben picked art and music because those were two of his favorite pastimes. As the weeks and months wore on, the mainstreaming/inclusion never seemed to happen. Finally, on parent-teacher night, my husband went to talk to the art/music teacher to feel her out. We had been told that she was resistant to having Reuben in her classroom. After a long discussion, she finally said that she didn't know what we expected as she wasn't going to be able to make him a Picasso or a Beethoven. She was quite defensive and nervous. My husband laughed and asked her if she was going to make all of the typically-developing children famous artists and musicians and if their parents were expecting that?
In the end, she said that she was angry because she felt that Reuben was being forced on her and that she had no training in working with children like him. When it was explained that we just wanted him to have the opportunity to learn whatever he could from her and that we weren't expecting miracles, she promised to give it a try. By the end of the year, she adored Reuben and he was one of her most attentive students.
Sadly, high school was pretty much of a waste for Reuben. He was placed in a special education class with a teacher who had no training or experience. He had the same "teacher" for five years. His greatest gains came from his relationships with other kids in all areas of the school – as often turns out to be the case. In the end, I could say we can see and appreciate the growth from the nothing of 1975 to the successes of today, but we realize many children have been and continue to be left behind by programs that are under-funded, administrators who lack insight and leadership, and by teachers who may be under-trained, overworked or poorly motivated. Call it what you will, but we are still in the early stages of early intervention, mainstreaming, and inclusion, and much remains to be done.
Reuben is now almost 33 years old. He has worked since he was 15 – jobs gotten on his own. He has bagged groceries since he was 16, and last year he worked for the 2009 Winter World Games, which were held in Idaho. He competed in the games and won two bronze medals. He is a board member with Special Olympics Idaho and is a candidate for service on the Idaho Council for Developmental Disabilities. He has overcome challenges that seemed insurmountable, is loved and respected by all who know him, and he is the apple of our eye.