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.
Lexi Mag 
Hi Lexi–I just left this on one of your older posts about wordpress. But I don’t know if you see comments on old posts? Would you please e-mail me as soon as you can? We have an unusual problem with my daughter and wordpress, I’d actually call it an emergency given her situation. (she’s bi-polar) I’ll explain when you contact me. I don’t know anything about this blogging stuff but I’m real good at e-mail. Thanks so much, Lisa Thompson in Mesa, AZ.
there’s also maybe not so much you NEED to say about down syndrome.
it’s been a while since i read an article on how vaccines cause down syndrome, or how kids with down syndrome are dangerous and it’s been a while since it was stylish for every hatwipe experiencing a moment of cognitive dysfunction to declare they must be on the “down syndrome spectrum”.
I love your response. And I have a 14..almost 15 year old son who happens to have the dual diagnosis of Autism AND Down Syndrome….and I am always learning….each new stage and day brings something new.I will never profess to ever know it all about my child or anyone elses. But I do know that so many things I thought or beleived to be true when my son was small…have not turned out to be so….so yes..listen to the ones that have “been there”…read-research and learn..but most of all….parent to your OWN child.as only you will know what worksfor them!
I can only listen to little bits at a time. When my son was younger, I purposely tuned out parents of ASD kids in adolescence because it frankly scared the bejeesus out of me to hear it. I always told other parents that I only know THIS much about autism, I could only know as far as my child had grown and experienced. As my kid approaches each new phase, I start to listen to those who’ve been-there-done-that, and you are right, it helps so much to hear the voices of experience, much more than the voices of “experts.” Each phase too brings me an awareness of how much I THOUGHT I knew then, and how much more I need to learn.
And, like you, I think I write more to figure it out for myself than to explain it to anyone else. 😉
Awesome response! I remember being told by parents with older children with Autism that I would be surprised what behaviors JOhnny would mature out of. Still shocked when I began to notice this. As for DS, I always go back to everyone tries to prepare you for life with a child with DS but nothing prepares you for life without them cause it SUCKS!