I thought that blogging about Down syndrome for 31 days in a row would be really, really hard. There are definitely days that I'm struggling to figure out what to write, but usually it's more a struggle to sit down and find the time to try and put something meaningful together. Some days the material just comes to me. Today was one of those days.
I received a phone call from a woman I have never met and don't know. She had some questions about a pre-school and at one point in the conversation she said, "You have a son with a mild case of Down syndrome, right?"
Here is my disclaimer-- I did not know very much at all about Down syndrome before I was pregnant with Joey. I was incredibly ignorant and I completely and totally own and acknowledge that ignorance. In this journey with Joey I am reminded again and again of how little people know about Down syndrome. As we go along this journey I feel I am getting better and better at being an advocate. And by advocate, I mean someone who tries to help educate in a loving and meaningful manner without making other people feel ashamed or uncomfortable. So when I share these stories, I hope you understand the spirit in which I share them. I hope that others find the humor and irony in every day life.
Much like I have finally figured out what to say when people tell me that those who have Down syndrome are "such" happy people (my new response is: "That is a total myth. Individuals with Down syndrome experience a wide range of emotions.") I now know my response when people ask me how "severe" Joey's Down syndrome is.
My response to this most likely well-meaning woman (I try to believe that most people are coming from a good place-- it just makes it easier to believe that. I also believe that sometimes when there is a topic that we don't know very much about we sometimes say the "wrong" thing without even meaning to) was, "Actually Joey has total Down syndrome. You either have it or you don't. Just like you can't be a little bit pregnant, you can't have a little bit of Down syndrome."
In my effort to be more mature, more loving and less judgmental I also went on to tell her that until a year ago I knew very little about Down syndrome, but that people who have DS are just like other people and have a wide range of abilities.
This is what Joey thought about having a "mild" case of DS. . .
Finally- here are some photos of Joey eating his new favorite breakfast. He has graduated from yogurt (which he still enjoys on a regular basis) to cinnamon waffles with butter on them. Umm... delicious! His progress with eating different textures is one of the things we have been working hard on every day and we are so proud of his progress. This little boy amazes us every single day.