Wednesday, October 3, 2018

What Do You Mean "Everyone Isn't On Facebook?"

Once the social media train really got rolling, I stopped writing observations and stories through this blog and started posting to my personal Facebook page instead. What I failed to realize is that not everyone uses Facebook! I was aware of this intellectually, but I only had two friends that rebelled against social media, so the ease and casual interface of Facebook attracted me.

When we recently overhauled our website to include a blog, I thought I would again begin sharing casual stories about Nick and Down syndrome, but once complete, the website quite appropriately felt more professional than personal.

On October 1st, I posted to Facebook about Down syndrome awareness month and Nick. Yesterday, I was asked by a friend if she could copy/paste the post and share beyond Facebook. I wasn't quite sure how to respond. I wanted to say "yes, of course," but the idea of my words and Nick's picture out in cyberspace without any context felt odd.

So, for that friend, and any others who want to know my thoughts on Down syndrome this week, here is the Facebook post. Feel free to share with anyone you'd like. I might even be prompted to write a bit more often. Working with the 30 students weekly who are part of DSF's After School Academy has given me a lot of food for thought!


This is the Facebook Post (of course, outside of FB now):

It has been grand to see all the posts today in celebration of Down Syndrome Awareness Month - October. Some parents will post information and share photos every day this month. Others will share their joys and challenges, answer common questions about Down syndrome and/or dispel myths about Down syndrome. At the end of the day, each of us want the same thing: for our child with Down syndrome to be welcomed, supported and included in our communities, in our schools, in work places, in living spaces and in recreational opportunities. We want equal rights and respect. It doesn't seem like such a big ask, but the road towards equality has been long, hard and slow. We have far to go.

I am forever grateful to all of the parent advocates who fought the good fight before Nick was born (among others, Madeleine WillRicki SabiaStephanie Smith LeeCarlene Anderson MattsonMerilee Bennett, and Sue Buckley). They have all changed the world so that Nick and all people with Down syndrome have better lives. Thank you!
For those outside the Down syndrome community, if you feel left out, you should. Some of my favorite people on this planet have Down syndrome, and if you don't already know someone with Down syndrome - get to know someone - this month is a great time for new friendships!
Once upon a time, before Facebook, we would write a yearly letter for the Visions Gala about our experiences with Nick. If you are at all interested, those letters and a few blog posts are accessible at
One final thought. Today Nick and I were early for his college class on critical thinking. We went to Starbucks, picked up drinks, and got to campus early so we could sit on the deck overlooking the ocean. It was warm, but a cool breeze was flowing off the water. It occurred to me in that moment, that I was exactly where I was supposed to be with exactly the person I was supposed to be with - Nick. The thought made my heart happy.
Much love to all friends in and beyond the Down syndrome community who have joined us in supporting Nick. We could not do it without you!