It’s too long and I need to figure out what to cut, but here’s a work-in-progress of a little bio I wrote about Sam, to use as a leave-behind when we meet with our congressional reps:
Hi! I’d like to introduce my reason for being at Buddy Walk on Washington this year: my son Sam.
Sam is five years old and will be entering kindergarten this fall. He has spent the past two-and-a-half years in a general education preschool, where he has thrived. Unfortunately, the educational road to get him to this point was not exactly easy. When Sam was only three weeks old, an employee of our school district announced to me, “He’s beautiful! Of course he’ll be put in our severely handicapped class in a few years….”
Despite Sam being barely more than a newborn, his future was already being mapped out based solely on his diagnosis. It wasn’t the first time that had happened in his young life—and it certainly hasn’t been the last. When Sam turned three and entered the school system, I requested that he be placed in an inclusive or general education setting, because I knew he would succeed there. I was told that was not an option, and I had to hire an attorney and file due process in order for Sam to get the education that is guaranteed to him by IDEA.
Sam’s story has happy ending so far, though—we ultimately were able to place him in a general education preschool, and he has thrived. He is a happy, healthy five-year-old who makes friends easily and has already mastered the skills needed for kindergarten readiness.
Sam loves trucks, trains, planes, and all vehicles. He also very much loves any sort of sports. Perhaps the only thing Sam loves more than vehicles and sports is his nine-year-old brother, Theo, who is autistic and is Sam’s biggest advocate and champion. Theo believes strongly that Sam should be given the same opportunities as everyone, and we very much agree. Presume competence—always presume competence!
As the mother of two neurodivergent children, disability rights are of the utmost importance to me. Sam may be the main reason why I serve as co-chair of the California Down Syndrome Advocacy Coalition, but I am also keenly aware that the rights we fight for with regard to our citizens with Down syndrome are beneficial for other people with disabilities as well.
Someday, I hope that Sam will be able to speak for himself and tell you exactly why it’s important to him that you support disability rights. But for now, while he is not yet verbal, I will speak for him. I’ll ask you to join the Congressional Task Force on Down Syndrome, a bicameral, bipartisan task force to promote legislative activities and public policies that would enhance the quality of life for those with Down syndrome.
I’ll also ask you to do everything in your power to ensure that no caps or block grants are put on Medicaid, as they would devastate the funding for Lanterman, which provides so many services for our disabled community in California.
And finally, I’ll ask you to co-sponsor the three ABLE improvement bills: ABLE to Work, the ABLE Financial Planning Act, and the ABLE Age Adjustment Bill. I fully expect Sam to find meaningful employment as an adult, and I very much want to ensure that he can save for his future when he does.
Cathleen Small, on behalf of Sam
And of course, I’ll be including a picture of Sam, because a picture is worth a thousand words!