After a great deal of pestering from me, the local newspaper decided to run a story about the Buddy Walk. Well, it's kind of a lot about us and a little about the Buddy walk, but at least it's in there. You can read the online story here: http://hsn.live.mediaspanonline.com/Localregional/downfamily
For as much nagging as I did to get them to write about Down syndrome, I can't believe how nervous I was! The reporter called me yesterday afternoon while Sean was napping, so with the help of the Barnyard movie website, I was able to keep Aidan occupied and have a quiet house to talk to her.
She said she didn't know much about Down syndrome, so she asked me some general questions about it. At first I thought, "wow, this is great, I can tell her everything I want people to know about Down syndrome and we can reach new people!" Then I thought, "oh no, if I tell her too much or make it too complicated she might misquote me and it will be terrible to have misinformation printed!"
She asked what causes Down syndrome and I explained that it is a genetic trait that occurs at conception. I briefly described how the egg has 23 chromosomes and sperm has 23, but sometimes when the join the chromosomes pair up incorrectly. I said that in people with Down syndrome, they get 3 of the 21st chromosome (also called Trisomy 21.) I left it at that, but in my mind I am thinking, "well, except if it is translocation trisomy 21, where they have 2 of the 21st chromosome and then a third that is broken and attached to other chromosomes." I didn't want to confuse her a with genetics lesson!
Then she asked about how "severely" affected Sean is by Down syndrome. I said, "Actually, you either have Down syndrome or you don't. You can't have a little bit of Down syndrome, just like you can't be a little bit pregnant." I did say that individuals with Down syndrome may or may not have certain features in common, some may have physical issues that others don't, some may have developmental issues that others do not. The point is that each individual is unique.
We talked about how we found out about Sean's diagnosis, why we chose to move, and what our hopes were for Sean. I was happy to tell her that people with Down syndrome are accomplishing so much now, thanks to the support of their families and communities and inclusion in schools and society. I wanted to let people know that our children with Down syndrome can achieve many goals and be a wonderful asset to society, but it takes the acceptance and support of everyone.
We talked about the plans for the Buddy Walk and a little about my participation in the Gifts book. She called me back later to say that she did some reading on the NDSS website to get statistics to include in the article. She said, "I want to say Down syndrome victims... but that doesn't sound right?" I said "No, no, no! Please do not say victims! They haven't been attacked by anything and they are not suffering! It's better to say "People with Down syndrome..." She also asked why some refer to it as "Downs" and I explained the gramactially correct way to state it.
After the interview, I felt pretty reassured that it went well and that I would be accurately accounted. I spent the rest of the afternoon, cleaning up the house, getting the kids in clean clothes for the photo, and hoping that they would co-operate for the photographer. They did remarkably well and the photographer was very nice. We might have to use the family photo he shot for the paper edition for our Christmas cards since no one else can get a decent photo of the four of us!
We stopped by the news stand and bought 5 copies of the paper this morning on the way to school. Each son took a copy into class to share with their friends and teachers. Tomorrow is our Buddy Walk Day and I hope our efforts to bring awareness reach many.