Tuesday 14 February 2012

my STIMMY little Valentine and the whats ifs...

It's Valentine's Day!  So what.  But really, although Rogan and I have never gone in for this consumer created and fueled 'holiday', this year we both, separately, decided to acknowledge the 'love' day with a card for one another.  Yay us and our super awesome mind reading powers.  I thought I would share the fabulous display of love my husband CREATED, yes created during the last week in the few hours he has to himself without me cramping his style. You don't even need to tell me how RAD this card is, I already know.  I have felt very special all day as a result. 

It has been nice to feel loved and special today as the last few weeks have really taken a toll on me.  It's funny, in the months leading up to the diagnosis, I spent most free moments learning, researching, obsessing, if you will, over what was ahead for us and Mylo.  I was WAY ahead of the game for sure.  On the other hand, Rogan was happily playing ostrich.  You know, the lets bury our head in the sand and pretend it's not happening kind of thing.  I don't begrudge him that, though at the time I felt a little solitary in my need to procure any and all info. about autism and how it pertained to Mylo.  I realize now, it was the way he needed to process what was going on, just as, to get through it, I needed to learn.  Following the diagnosis however, our roles have completely reversed and shifted.  I have found myself with my head firmly planted in the sand, not wanting to read one more thing about autism and feeling like I don't have the will to embark of the next stage of life with the big A.  Whereas, Rogan has shifted into high gear, learning about tax credits, therapies, researching how to create a sensory room for Mylo.  I suppose at some point soon we will inevitably converge and pool all our awesome resources and get this show on the road.  Right now, we wait....again.  This time for the funding agreement to arrive,  To be honest, I am ok with a few weeks of down time, to shut my brain off until we get the ball rolling with therapy.

And to shut my brain off or up, as the case may be, is what I REALLY need to do right now.  My thoughts have been stuck in the future, which from past experience, I know is never a good thing.  Just in the last week or so, I have seen quite a few blogs from special needs parents, talking about the fact that their kids don't have any friends, or they have just discovered that their kid eats lunch alone every day at school.  This rips me apart.  I start thinking about all the 'what ifs' that the future may hold.  What if Mylo is never able to talk, what if we never figure out a way to communicate with him, what if when he goes to school the kids don't want to be friends with him, what if he comes home sad every day and we can't make it better for him, what if he can never live an independent life, what if something happens to Rogan and I, then what.  You see, living in the future and playing the 'what if' game is surely the wrong road to travel for no other reason than, today Mylo is happy, today Mylo is content, today Mylo is just perfect. So, I should just tell my brain to shut the hell up and live in the present.  I promise to give it my best shot.

I'm going to end this post with what I consider one of the cutest videos going.  I recently took Mylo to a drop in tots class at the Vancouver Circus School.  Although he couldn't have cared less about the circus type stuff, the big, open space, the squishy mats and the awesome echo his screams made were a stimmy kids dream come true.

I should probably explain what stimming is eh?  I realized as I was talking to my friend J today, whom I am so glad I ran into, that I use that word as if everyone knows what I mean.  Most, but not all autistic persons have what are known as 'stims'.  Here is the Wikipedia definition just to clarify:  Stimming is a repetitive body movement, such as hand flapping, that is hypothesized to stimulate one or more senses. The term is shorthand for self-stimulation. Repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input. 

Mylo has developed quite a few new stims lately, some of which you will see in this video. His most common ones are loud screams, grunts and vocalizations, hand flapping, ear hitting, toe-walking, clapping and lately chest thumping with vocalizations....kind of Tarzan-like.  It's fabulous! :) At first the stims freaked us out but now that we know that they serve a purpose for him, we let them make us smile instead.   Happy V day folks from R, M and I.  Only love.


  1. I love this boy. And his mama. That is all.

  2. Only love from us too. I love that video! Too sweet. xoxoxoxo