I borrowed the subject line from her Mom’s email signature (with her permission) because it says a lot of what I want to communicate today.
As parents, we often say that we do not care what others think of our child or the way we take care of her or him. Our lives should not be dominated by what others think. At the same time as people, we long for acceptance. Our children want acceptance too and we want that for them.
Walking into a public place with my son, Billy Ray (now 22 years old), generally brings stares from others. He has many of the physical features common in people who experience Down Syndrome. Many people think of “Corky” from the popular television show “Life Goes On”. Corky was high functioning and generally well behaved. Billy Ray also experiences Autism and other diagnoses. The combination of diagnoses means that he experiences both disabilities differently than if he had one single diagnosis. He may be loud sometimes or very active or he may throw his napkin. Because he appears Down Syndrome people can be shocked by his behavior.
Over the years doctors and educators have frequently told me what is “usual”. It is my experience that Billy Ray tends to be opposite of everything that is usual. There is no “usual” for him. As Trisha’s Mom says “she’s not typical, she’s Trisha. Our kids need to be accepted for who they are as individuals with strengths and weaknesses.
Some parents get tired of fighting to bring their child out in the community and live in semi isolation only going out for what is absolutely necessary (school, doctor’s appointments, etc.). Billy Ray and I enjoy getting out a lot. We have created a smaller community within the larger world where people see Billy Ray regularly and get to know him as a person. We use the same stores, restaurants, recreational facilities, and church. This brings understanding more than if we went to different places all the time. Billy Ray is generally enjoyed greatly once he is known for who he is.
A part of parenting complex children is educating those around your child. Establishing relationships in a smaller community is easier than in the big city community. I like to think of small towns portrayed on television programs such as Little House on the Prairie. They had usually one shopkeeper, one church, one doctor, etc. Everyone got to know each other and generally accepted their differences. It works even in big cities to create a select group of friends and business contacts where your child can be known and enjoyed.