I contacted a few of the moms that I had met online to ask what they would do. One told me what her presentations typically look like for different age groups. Another sent a power point presentation that she had used with K-4th graders. I bought the book We'll Paint the Octopus Red and asked local moms if I could take some of their pictures from facebook to use in the presentation.
As I spoke, and as I listened to the other moms speak, it struck me that we presented Down syndrome in very different ways. For example, one mom talked about receiving her daughter's diagnosis. Another talked about how she and her husband responded to the news.
I didn't talk about that at all.
When I think about life with Ben, I recognize that there are at least two stories happening here. One is my story. What does it mean for me - as a mom - to raise a child with Down syndrome? How am I doing? What am I thinking? I think that I post carefully about this on the blog.
Because the other story is Ben's. What does it mean to be Ben? What does he think and feel?
I try to represent him (and my other kids) carefully. And fairly. I don't want them to be embarrassed or hurt when they get older and see what I have written. (At least, I don't want them to be too embarrassed).
I think blogging and speaking for Down syndrome awareness force me to think about the two different stories. If I am talking to other moms about prenatal testing or what it is like to parent a child with special needs, I'm going to share my story. I'm going to talk about things that scared me, issues that worry me, and situations that bring me joy.
If I'm talking to a group of kids about Down syndrome, I find that I think more about Ben's story. I don't want to set other children up for fear or worry - or to shape their perspective of Down syndrome in a way that makes Ben seem less than or scary. The message I want kids to receive is basically - Ben is a kid, too. It may take him longer to do some of the things that you are able to do, but he will do them. He might not speak as well as you do, but it doesn't mean that he doesn't understand. Please be patient with him. We all have areas of strength and weakness. Ben and other kids with Down syndrome are more like you than they are different.
But no matter how I advocate or speak or write, I'm still going to be writing/speaking from my perspective. And for the time being, I speak for Ben, too. I shape his story with my words.
In the long run, my relationship with Ben will be like my relationships with Evan and Corrie. He will have his own opinions. He will not always agree with me. He will not always see things from my perspective. And I am going to miss the boat with him, too - just like I miss the boat with Evan and Corrie. I'm not always going to understand what hurts his heart. I'm not going to "get" what it means to walk (or crawl) in his shoes.
I have read several blog posts and articles lately that have forced me to think about the two perspectives - that have challenged me to think about the different ideas and opinions held by parents and their children, special needs or not.
I plan to post about some of the areas where I see a disconnect. I'm just working things out for myself - and I'm doing my musing online. Thanks for reading.