Sunday, October 31, 2010
Can You Hear Me Now?
A few of my blogging friends in the autism community will be silent tomorrow, in the name of supporting Communication Shutdown. It's an initiative that encourages people to stay off of social networks such as Facebook and Twitter and blogs for one day in order to show what everyday life is like for many people with autism who have difficulty communicating.
I understand the thought behind this (kind of) and I absolutely 100% support those who are participating.
I've just chosen not to be among them.
I'm not sure how my not going on Facebook or Twitter or blogging would draw attention to this issue - but I truly respect and understand those who feel that doing so can. To me, it feels too much like hiding.
You see, even though I use pseudonyms for my kids, it took a long, long time for me to become comfortable with the idea of talking about how Boo's autism diagnosis has impacted and changed our family (and continues to do so). One of the reasons I started this blog two years ago was to share the day-to-day happenings with relatives and friends "back home" and elsewhere. But I also had a hidden agenda. I also wanted to share with them what life was really like raising a child with autism and his twin sister who is becoming a little more self-conscious and aware of her brother's issues. I wanted there to be some understanding behind the "he's doing great!" sentiments that family members would share on special occasions - that, yes, he is doing great (most days) but ....But.
I took my inspiration from Susan Senator and then from MOM-NOS, two of the first "autism mom" bloggers I read way back in the early black hole days of life following diagnosis. It would still be several years before I decided to start a blog about our own experiences. And in doing so, I found this community of other kindred souls and people I've come to call my velveteen friends.
These are days I can't remain silent. We're having a bit of a tough time behaviorally with Boo, with Halloween being the latest freakin' nightmare (when he wasn't talking gibberish or baby talk, he was yelling way too loudly and nearly running into the streets; he criticized neighbors' candy offerings with rude "I don't like these!"; he departed several houses by wishing the occupants a Happy Hanukkah and attracted more than a few stares, along with bedtime questions from Betty about what she should say if her friends say something tomorrow about Boo's strange behavior).
I wasn't prepared for this because while his behavior has always been slightly quirky on Halloween (for two years straight he walked up to each house, notepad and pencil in hand, and asked each occupant their name as if he was a census-taker), he's never been like this.
I can't remain silent today or tomorrow - about this or anything else - because if I do, then maybe that prevents someone who also had a hellacious Halloween or is going through a rough time to hear that there is someone else who is going through something similar. And if you stay silent today or tomorrow, then I can't hear from you what I need to hear: that we're doing the best we can, that you've been there too, that you are there.
I can't remain silent because I fear it would be a little like hiding. And once you decide to stay in bed for one day, it's easier to justify doing the same for the next day.
It's especially interesting to see how this whole Communication Shutdown thing is playing out in the autism community. There's no hatriolic vitriol being spewed by the differing sides, which is mighty refreshing. We're fine with those who are participating and we're fine with those of us who aren't. Live and let live, peaceloveandunderstanding, agree to disagree, and all that good stuff. It's a lesson that more people should take notice of and take to heart.
Accepting others' differences and other people's choices. Maybe that's an unintentional byproduct of the day, and if so, I'll take it.
I hope Communication Shutdown does succeed in bringing awareness and funds to those with autism. The more of both, the better. I'm glad they are doing this and I'm glad it has attracted such interest.
And if you're participating in Communication Shutdown, I'm glad you're doing so ... and I'm even more glad that it is just for one day.
Because your voice is just too valuable and important to lose.
copyright 2010, Melissa (Betty and Boo's Mommy, The Betty and Boo Chronicles) If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.