I was asked a question the other a week or so ago that has caused me to go silent for a week or so; silence and quiet give the opportunity to find clarity or at least allow us to make sense of all the noise that permeates our lives and thoughts.
The question and I quote “Dear parents, I’m looking for some help. The question is, “So what?” So what that some kids have autism on top of Down syndrome? Why should anyone care? Why should there be a group for families like ours? So what? Tell me why you need a community that “gets it”?
So what? My wife and I have two children, twin boys; they are currently 17 years old and seniors in high school. Both of them were born with Down syndrome . . . that’s a one in 80 Million occurrence . . . and since their birth we’ve noticed that they have different personalities than some other children that have Down syndrome. Our sons like to be by themselves, they like trains, they like to line their toys up in rows and when we bought them bicycles, they knocked them over and spun the wheels around as fast as they could and just watched the spinning wheels . . . Big wheel keeps on turnin’ . . . And when they become upset, they flap their arms and sometimes hit themselves in the head repeatedly . . . sound familiar? It does if you know Autism . . . So what?
Does silence come from frustration or isolation . . . Or is our frustration just an imagination . . . after all as parents we all face challenges . . . some different than others. We’re all unique and yet we’re all the same . . . right? So what? Life is a mystery, we must all stand alone, or do we? Should we? . . .
Yes, I . . . scratch that . . . we need a community that understands our children and in the event we leave this earth before they do, we need you more now than ever to understand not us, but them . . . to understand that they have a voice, they have love and understanding to give and share that we haven’t yet figured out . . . we need you to follow in our footsteps, or just listen and watch in silence, with patience and love and understanding that our children have something to give that is so much more than we as parents could ever imagine . . . and that we trust so much more in you than you will ever know . . .
Sometimes the needs of the few outweigh the needs of the many . . .