Parents are the most ardent advocates for children with disabilities. After my son with Down syndrome was born, I was determined to do everything possible to make his life as good as it could be. Over time I discovered that this would mean breaking barriers that prevented people like my son from reaching their highest potential. I read many books and articles when Dave was a baby. I learned that it has always been parents who have driven the changes necessary to improve the lives of children with disabilities. This post provides some examples of how parent advocacy has impacted Dave’s life.
Breaking barriers to life
One couple who blazed a new path for children with disabilities was Kay and Marty McGee. When their daughter with Down syndrome was born in 1960, they defied their doctor’s advice to put her in an institution, and instead took her home to raise her on their own
Since that time, the lives of people with Down syndrome and their families have improved dramatically, mostly as a result of parents like the McGee’s breaking barriers. For example, congress passed a law, now called the Individuals with Disabilities Education Act (IDEA), in 1975, that provided all children with disabilities the right to education. However, five years later, doctors were still recommending withholding life-saving surgeries for babies with Down syndrome and other disabilitlities. Many newborns died when they could have lived.
Luckily, that practice was outlawed before my son was born. Within eight hours of his birth, he received the necessary surgery to correct a gap in his intestines, which saved his life. He loves to show off the scar produced by that surgery!
Breaking barriers to inclusive education
When Dave was two years old, our state Department of Education hosted a conference designed for parents of children with disabilities. I was fortunate to be able to attend the event, which had a profound impact on me. The conference focused on the practice of “inclusion.” A child who is “included” attends their neighborhood school and joins their typically developing same-age peers in the classroom. Appropriate adaptations and supports are an integral part of the practice.
In those days, children with disabilities were often bussed out of their neighborhoods to a school with a special education classroom. I still get teary-eyed remembering how one presenter pointed out the callousness of this practice. He asked us to imagine our children as loaves of bread on wooden slabs in a bread truck, being shipped out.
This doesn’t sound so compelling as I write it now, and I’m pretty sure I am not recalling his metaphor exactly. But I remember very clearly the complete silence in the auditorium as parents processed his words and recognized that this common practice was insensitive.
Inclusion in Kindergarten
Several years later, armed with the materials I gathered from that conference, I approached the principal of the kindergarten attended by Dave’s same-age peers without disabilities. I asked her to consider including Dave into her regular education classes. She read the materials and eventually agreed to try inclusion.
Dave was among the first group of children with disabilities in our district to be fully included into classes in their neighborhood schools.
I will be forever grateful for the brave teachers who volunteered to take Dave into their classrooms . At that time, regular education teachers weren’t trained in special education, and they were quite nervous. But over time they learned the value of his presence in their classroom. His first teacher once told me a story that shows why inclusion is important – not just for the child with a disability, but for all children.
Her class was broken into two teams that spent most of the time separate from each other. The teams were named for animals or colors, I can’t remember now. The teams gathered together at some point during the day for reading. On one occassion, the teacher asked my son to read out loud. Several of the children in the other section laughed as he stumbled over the words. None of the children from his group laughed. He was one of them.
Breaking barriers for one child affects all children
A few years later, after Dave had moved on to the next school, I returned to the school where he had attended kindergarten. As I chatted with the principal, she pointed out a young man with autism at the other end of the hallway. She told me that his parents didn’t have to lift a finger for their son to be included because of what I had done for my son.
I worked to improve my own child’s school experience, as many parents do. As a result, the lives of children who came after him were enhanced. We followed in the footsteps of Kay and Marty McGee, and so many others who came before us.
A Place of His Own
Fifteen years later, after Dave’s graduation from high school, we approached a new frontier – independent living.
At that time, many people with Down syndrome lived with their parents into adulthood. This may not be the best thing for the child in all cases. If the child spends all their time with their parents, their life can fall apart pretty quickly when the parents pass away.
Where will they live? Who will care for them? Can they continue to do the activities they love? These questions and others need to be answered very quickly. And adjusting to a new life can be extremely difficult for individuals who, by their very nature, thrive with stability. I did not want this to happen to my son.
But that’s not the only reason I wanted Dave to have an independent life. Most people prefer to be as independent as possible, and our children with disabilities are no different. When Dave was a baby, I read a lot about the “plateau” that our children would eventually hit in their ability to learn. I have come to believe that there is no “plateau.” Dave thrives, and continues to learn and grow, because of the responsibilities related to living on his own.
I wanted to create a world for Dave that will continue without significant change after I am gone. It’s been 14.5 years since he moved into his apartment, and I think we are mostly there.
The results of having a place of his own
When I’m no longer around, Dave will miss our weekly Yu-Gi-Oh card games, which he almost always wins. He will miss our 8:30pm on-the-dot phone calls. He may even miss my nagging him to wash his dishes when I visit him.
But otherwise his life will remain unchanged. He will continue to go to work using public transportation. His habilitation aides will continue to visit him to help him get his chores and grocery shopping done. He will continue recreating the hockey masks and wardrobe from each of the Friday the 13th movies, or whatever projects he likes to do. And he will continue to get his fried chicken on Wednesdays and his Buffalo Chicken sandwich on Saturdays.
In future blog posts, I will describe how Dave got his apartment and how he manages to live there with the support of habilitation aides, and me.
Kudos to you for believing in Dave and for changing the world for others through your actions!