Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Twitter

An Ongoing Dialogue

with 11 comments

I struggled to keep up with the flow of conversation.  Everything was moving too fast for me to understand.  I longed for those nonverbal cues I instinctively pick up on.  When is it my turn to say something?  Do I introduce myself, or should someone else do that?  Do I direct my conversation at one person, or talk to the whole room, at anyone who will listen?  The buzz of conversation was going on around me, and I needed to take part in it, but I was thrown by how alien it seemed to me.  Too frenzied, with constant repetitions, butting in where I thought I would interject.  A whole new way of framing questions.  Some people were conversing before I got there, was it acceptable to put my words across?  What do I even talk about?  When I figured out something too say, it was too long, and the words could not come out.  Symbols to decipher that everyone else had already figured out.  I was confused.  I didn’t know the rules.   Where are the rules written down that everyone else seems to get?  It was too hard, on top of a long day.  My brain is just not wired for this, I thought.

Despite my utter conviction to shout out, my first few minutes co-moderating for The Coffee Klatch‘s 24 hour event were all too silent.  I’d meant to go to a “Tweet Room” before the event, but life just got too busy.  I tried several times during the day to show my support, but with Pudding home from school, and Cubby ill, there was just no time yesterday.  Finally in frustration I tweeted that my autism parenting was getting in the way of my Autism Shout Out.  There was no let up for the rest of the day, finally Spectrummy Daddy came home, we ate, and it was time.  No preparation, no time to figure things out.

Then I thought about my Pudding, how she must feel like this all the time.  How she keeps struggling in the face of all her challenges, but she does it anyway.  I took a deep breath, expressed some not-so-meaningful thoughts, and tried to include people in the conversation.  Or conversations.  I don’t know, like I said, I was confused.  I’m not cut out to be a Twitter chat room moderator, that is for sure.  But then again, a few months I didn’t think I was cut out to be a blogger.  And just over a year ago, I really didn’t think I was cut out to be an autism mother.  Sometimes you just have to do things anyway.  Kudos to the gang at The Coffee Klatch who make this look so easy.  I have a deep appreciation for all who brought about yesterday’s amazing event, it was incredible.  Well done everybody!

I’m still in awe of the incredible feeling of support and solidarity amongst strangers.  You can never underestimate the feeling of being amongst those who get it.  I’m humbled by the efforts of adults on the spectrum to ensure that my children have an easier passage through life.  I’m inspired by parents who encourage me to keep going through the difficult times.  When our community comes together, it is worth shouting about.  I lost my voice for a while after Pudding’s diagnosis.  At times I was silent when I should have spoken out.  I’ll make every effort to be part of this ongoing dialogue, even if I can’t always figure out how best to do that.  Though the day is over, some people are just starting to talk, others only beginning to listen.  We’ll have to keep talking until we have understanding and acceptance, and those who need to break the silence know who they can talk to.

Enough of the silence of shame and stigma.  I’m talking about my children, and this wonderful community we all belong to.  I just feel honored to be part of this conversation.

Written by Spectrummy Mummy

November 2, 2010 at 2:49 pm

Social Networking

with 12 comments

I am yet to see The Social Network movie (babysit, anyone?)  but I’m dying to.  From the time I discovered Facebook, I adored it.  It was almost like it was made for someone like me, who is emotionally close, but geographically distant most of the time.  I’ve always been much more of a computer geek than a telephone drone, so I’d found the perfect vehicle to keep in touch with everyone in one place.  Don’t get me wrong, I loathe all those farm/garden/zombie/vampire apps my contacts often play on, but I can hide those from my feeds, and whatever floats your boat anyway, some people don’t like spilling their lives into a blog (imagine!) so I get it.  I like updating my status, and I like “liking” and I can even like my own status.  Who are you calling a narcissist?

Then there is Twitter.  I didn’t start on that until just after starting this blog a couple of months ago.  It made me confused and crotchety, though my close family and friends would tell you that is just the way I am all the time.  Twitter just seemed to be a bunch of people in a room shouting at one another, and I didn’t see the point.  Slowly though, new connections were forged, and I started to figure it out.

The beauty of Twitter is that you can shout at anyone in the room.  If you want a particular person to be in that room, you simply follow them.  I was dissatisfied with Pudding’s experience at the Halloween Dress Rehearsal at The Disney Store, but instead of taking that message to a nonchalant call centre operator, I could shout it publicly at the president of  The Disney Store.  The message that you take to the top?  That is the message that gets listened to.

“@DisneyStorePrez Jim Fielding
@spectrummymummy our events can accommodate many kids, but I am happy to hear more ideas”
Excellent.  Not only is that what you want to say publicly, Mr. President, but it also happens to be what I want to hear.  So I gave him some suggestions, but look at that, he wants to hear some more.  I know we have more, so go and tell him!  Disney theme parks do a great job of taking care of our kids, there is no reason why that can’t trickle down throughout the entire Disney empire.
I think I’m starting to find my voice here.  My voice is part of a collective of voices getting louder every time we deliver our message.
Awareness is already here.  A number of my Facebook friends have taken the Autism Spectrum Quotient test recently.  There are movies, TV shows, articles, and books talking about autism.  These days it is a hot topic.  People are aware, but we need more, and we won’t be quiet until we get it.  We want understanding and acceptance for those living with autism, and that is a message that needs to be heard.  It is a message I’m willing to shout.
There is a campaign on November 1st asking people to avoid the social networks as an effort to raise Autism Awareness.  I will not be part of it.  While I appreciate the sentiment behind the idea, the concept just doesn’t work.  One day of avoiding Twitter and Facebook will in no way represent a lifetime of communication challenges.  Some people living with the challenges of autism are reliant on social networks to communicate with the rest of the world.  They can’t take a day off from those challenges.  For right now, I am speaking on behalf of my children.  I can’t take a day off from that.  We can’t be silent.  Let’s go beyond awareness and get some real understanding and acceptance.  Let’s do that by talking about autism to everyone who will listen.
It is my great honour to use an hour of my time on November 1st to be a guest moderator for The Coffee Klatch’s first ever 24 hour Autism Chat on Twitter.   Please join me there, help me shout a message of understanding and acceptance.  Because people are listening if you shout publicly, just ask The President (@DisneyStorePrez).

Written by Spectrummy Mummy

October 28, 2010 at 7:13 am