written by Barbara Monday
Tom is an adult living with a developmental disability. He has a part-time job, working five days a week. He works hard and is very dedicated to doing a good job. He gets up, fixes his breakfast and takes the bus to work. He shops for and prepares his own lunch every day. He helps with chores around the house and reminds me of many things I usually forget. He has taught me much about perseverance, patience and the resilience of the human spirit. I am so very proud to say I am Tom’s mother and I am grateful he is part of my life.
In years long past, a family who had a child with a developmental disability did not want anyone to know. Many of these children died due to the lack of the advanced medical care we have today. But some may have been ‘allowed to die’ by withholding basic needs and nurturing. After all, the runt or weakling from a litter of piglets was usually disposed of.
In years long past, to have a child with a developmental disability was considered a disgrace or a sin of that family. Of course, we all know the saying the ‘sins of the fathers shall be visited upon the sons’. This has roots in the Bible and was used by Shakespeare in different contexts. Or perhaps the mother had done something wrong during her pregnancy or after the child was born. The finger was certainly pointed at the mothers in the early cases of autism.
In years long past, many families who had children with disabilities tried to keep them away from their extended families and the general public. They may have been hidden away in an attic, cellar or a bedroom when company came to call. They didn’t go to school and didn’t play with other children.
Doctors said these children would never develop and recommended they be sent to an institution where they could be ‘properly cared for.’ There was the accepted fact that as these children grew to be adults they would have inappropriate behaviors or could physically harm others.
As a testament to our humanity and increased knowledge, we have come a long way since those days. Today institutions are closing and our children with disabilities live with their families. They attend school and are being integrated into regular classrooms. They are being exposed to grade level curriculum and are learning how to function in their communities. Given these opportunities, they are being found to have strengths and talents and are far exceeding expectations.
Parents and other caregivers of children with developmental disabilities have kept up with the times. We are proud of our children as they try harder to do the things the rest of the world does with ease. Not only do they have to work harder, they generally do so with a good attitude. The joy and enthusiasm we see when they complete a task by themselves is inspiring. To hear one say, “I’m smart” and know they truly feel that way is awesome. For others to accept our children and appreciate them for the people they are as good as their achieving a college degree!
Yes, our children with developmental disabilities grow up to be ‘adults’. They have hopes and dreams for their futures. They want to have jobs and live away from parents in a home of their own. As they cannot achieve those goals independently, our jobs as parents continue. We need to know they will have that home, especially as we age and know the day will come when we will not be there to support them. We need to know they will have the support to continue to learn and work harder every day to be just like anyone else. Some people have not kept up with the times and continue to harbor misunderstandings and feelings of fear. They want ‘adults’ with developmental challenges to just disappear and give the ‘years long past’ justifications for their actions of discrimination. But, they are here to stay….. To work hard, to help, to be a friend and to be a part of the community just like anyone else. We don’t keep them in the attic anymore!