Tuesday, November 2, 2010

Communication Shutdown

Amber Naslund wrote a thought provoking, "get-your-cause-on" post on Brass Tack Thinking about yesterday's autism awareness event called Communication Shutdown that sparked my response below (I changed it a bit from the comment I left)...

Being a mom of an autistic kid and being an autism advocate I completely got the premise of Communication Shutdown. Silence was our life when our son was 2 1/2. We went from a very vocal infant to a barely audible toddle in less then 12 months. For me, this event brought back the diagnosis, the struggle...gosh, it was almost 10 years ago.

Our son is 12 and as I mentioned he has autism. He was diagnosed at 2 1/2. The county early developmental team working with us at the time said that he would never be able to attend a typical school setting because he was mostly non-verbal and had so many delays. They told us to plan for in-home schooling, etc.

Well, our son's story is one of challenging the labels and the "low" expectations. We made our own game plan with the help of many a therapist/teacher and lots of loving repetition and I'm happy to say our 12 yr old is in a typical school setting without para support. We have our challenging moments (mostly social interaction, communication cue missteps) but we are moving forward every day.

He and I discussed yesterday's Communication Shutdown and he was thrilled about the worldwide effort to (as their chater rsays) create "a sense of disconnection and a sense of frustration. By creating a little empathy, we hope to encourage a wider understanding and acceptance of people with autism – an understanding we recognize those in the autism community already have."

He saw me sit down at the laptop and start up tweetdeck (by habit) while he was working through homework last night. I told him, "Oh man, this Communication Shutdown thing is hard for me. Do I ever want to get on Twitter and share this news...but I can't."

His reply, "Now you know how I feel about 87% of the time, Mom." And he smiled adding, "This is good."

Awareness is good. For me, the Communication Shutdown was a one day event to help people walk in my son's autistic shoes. From the blog #shutdown posts and twitter comments of the folks that did it in support of autism (but didn't know anyone directly with autism), I read a lot of "this was helpful". In my mind, it was a learn by doing (or lack of doing) model.

There's so many wonderful autism awareness organizations providing a ton of amazing information, programs, etc. every day including Autism Speaks and The Autism Society of America. There are fantastic autism resource blogs as well. And April is Autism Awareness Month with April 2 being World Autism Day. So there's a lot of resources and discussions going on every day. The Communication Shutdown one day event was one more way to help people understand how complex and how frustrating autism can be.

For me, yesterday was my day to listen and not connect. It was a good reminder for me on how far our son has come and that he still struggles every day. Today and every other day (but yesterday) is my day to share our story and hopefully help some folks along the way.

Posted via email from zenaweist's posterous

1 comment:

paulakiger said...

Hi! I know we just "met" via Twitter and CFCA and I must tear myself away after this and get back to work. I decided to share my "shutdown" post from last year with you. That was the last day I was social media free until my Mission Awareness Trip with CFCA in July 2011 (when, admittedly, I did have access to email once a day but compared to my usual it was a virtual shutdown!). Here you go - can't wait to get to know you better! http://waytenmom.blogspot.com/2010/10/just-for-one-day.html