I got an email asking me why I don’t write as much about Down syndrome as I do about autism. The answer is simple: I know more about it. We started the process of getting Casey diagnosed 8 years ago this month. As much as I wish I could say that there have been days that I didn’t think about Casey having autism, that’s just not true. It’s always there. We’re always planning around it, building it, and trying to use it to Casey’s advantage.
I’m still relatively new to Down syndrome. Abby turns three this week, and while I can tell you ALL about infancy and toddler-hood with her, I still feel like I’ve scratched the surface of what life with Down syndrome is really like. I see Down syndrome so differently from how I saw it when she was born, when she was 1 and even just a year ago. I can’t imagine where I’ll be 5 years from now. I hope by then I will have a better understanding and could write more about it than just our own personal experiences. Really though, with autism or Down syndrome, this blog is mostly just our personal experiences.
Instead of using this space to hear my own pontifications about Down syndrome (which I do, don’t get me wrong, just not all of the time), I’m listening.
I’m listening to the parents who have children older than Abby. I’m listening to adults with Down syndrome, too. There is something about life experience that says so much more than anything I can find in a textbook. I love reading books, blogs and articles by people who have children Abby’s age, too. It’s great to have people I can identify with.
But to be honest, I have a really hard time when someone with a young child with Down syndrome openly says that they know as much as parents who have been doing this for decades. I would never want to be seen like someone who thinks I know beyond what life has taught me. Who thinks that I truly understand what life is going to be like even five years from now, much less ten or twenty.
It works that way with autism, too. I’m listening to the parents who have been doing this for a long time. I stumbled across a fantastic post written by a mom whose son is older than Casey. There’s a clarity in her voice that I don’t have with Casey right now. The post is here: What’s Your Name?
So, I hope that answer suffices. With all things with this blog, I will write our experiences, but I can’t write beyond what I know. I’m still new to all of this really, and I’m grateful for people who take the time to help teach people like me when I get the chance to be quiet. To just listen.