Odds are, most of us remember playing ‘Simon Says’ when we were kids. You know, someone in the group is “Simon” and tells the other players what to do (“Simon says, jump up and down”, “stick out your tongue”, etc) and the goal is to only follow the commands that are preceded by the words “Simon Says”. Players are eliminated if they fail to follow a “Simon Says” command or if they perform a non-“Simon Says” command.
(Okay, I had to share that because 1) it’s a lot of fun, and 2) I have a nerd-crush on Peter Dinklage. I wanted to name Simon ‘Tyrion’. Seriously. Adam wouldn’t let me.)
While we were discussing names during my pregnancy, we had several conversations wondering if we would be doing a disservice to our son by naming him ‘Simon’ because of the association with the game. How many times in his life is he going to ask someone to do something only to be told “But you didn’t say Simon Says”, we wondered? Is he going to be teased when his kindergarten class plays ‘Simon Says’? Eventually, we decided that we just really liked the name and that if being teased because of ‘Simon Says’ is the worst thing that ever happens to him, then he’s getting off pretty lightly.
In hindsight, our worries were kind of ironic because our Simon…. Well, he doesn’t say much of anything.
Simon is autistic. Or, to be more precise, Simon has an Autism Spectrum Disorder (ASD), or is “on the spectrum”. The diagnosis of ASD is a very, very broad diagnosis. Not everyone is affected to the same degree and not everyone exhibits the same signs. As the saying goes, “If you’ve met one person with autism, you’ve met one person with autism.”
As of this posting, January 2015, we are just three months from Simon’s initial diagnosis and just over a month since it was officially confirmed by a Developmental Behavioral Pediatrician at Seattle Children’s Autism Center. In this blog, I hope to explore Simon’s journey (and ours) in all it’s glory: his accomplishments, his regressions, and the challenges that all of us in the family are going to face in the future, as well as my accomplishments, foibles, and, yes, failures, as a mother, wife, and friend. I’ll probably also try to touch on current research into autism and any newsworthy tidbits I stumble across. Mainly, this is a way for me to work out MY feelings about this: the dismay, the guilt, and certainly the frustration I feel on a daily basis.
There’s probably going to be an avalanche of postings initially while I try to catch up to the present time, so bear with me. I’ve got a lot of ground to cover.
So, Simon Doesn’t Say…..