"Change, when it comes, cracks everything open."
Dorothy Allen

Friday, August 16, 2013


Go watch this video.  I will wait.  When you are done, and have dried your eyes and blown your nose, come on back and read the rest.

Welcome back.  All good?   Been crying a bit?  A little choked up?  Welcome to my world.

My son, Sebastian has autism.  Unless this is your very first time at my blog, you know this.  I mention this all the time.  It is no secret.  My daughter Sawyer had known the word autism from the time she was 2.  Sebastian knows he is different.  Different, not less, as is the motto of Autism Speaks.  

 Both my kids love, love, love Katy Perry, or as she is known in my house, Kerry Perry (rhyming words are way more fun.)  Katy Perry sings a song called Fireworks.  To me, this song is no more or no less that the anthem for autism. 

I listen to this song all the time- Sebastian loves it because it is in Madagasar 3, one of his favourite movies, and Sawyer and I have dance parties to this song all the fricking time.  We usually have our best dance parties before a big cleaning binge. 

The problem is that I can't listen to this song without crying.  Really, I can't.  Pretty much every time, unless it is the 4th or 5th time in a row that I have heard it.  I cry, every single time.  I can't listen to the words, and I can't sing along, without thinking about my son. 

My life is pretty fricking great.  I have a lot of amazing things going on.  But the relationship I have with Sebastian, me as his mom, him as my son, me as an advocate, him as a boy with autism- very few people can understand that.  My parents are probably closest, since they watch him a great deal, but even then, they aren't there every day.  They tend to get information secondhand, when I tell them I have this great idea to try GFCF diets, and to put him in private school.   They support me, they empathize with me, but at the end of the day, they get to go home.  I live a life only a few people know, and each of us autism parent walks our own path.  None of them are the same.  We all travel a road, overgrown with brambles and weeds, with glimpses of sunlight periodically available through the leaves.  If you are lucky, sometimes there is someone available to help you walk, to hold your elbow when you stumble, someone to lend you a hand up, when you lay down.  Sometimes you are tired, and really don't want to keep walking.  A good partner will help you keep going.  And sometimes, that good partner will help you detour a bit...take you off the path, and into that clearing in the woods.  You know the place- the sun shines there.  There is a breeze, that smells like clover and spring time, that moves the sweaty hair off your forehead and puts a small smile on your face.  It is a respite, a breaking place.  A place to catch your breath, to rest your feet.  A place to let you look somewhere else, somewhere that isn't the next footstep in front of you.  Soon enough, you will be back on your path.  Soon enough.  But for now, enjoy. 

I am lucky.  I have lots of people that help me get to that clearing.  As Sebastian gets older (he will be 12 in November), our autism journey is getting tougher.  It is hard, sometimes.  Don't get me wrong, this kid is fricking amazing. He doesn't trash stuff, he doesn't hit or fight.  He tells me spontaneously that he loves me.  He hugs me and will put his forehead on mine and stare into my eyes (he did this tonight in front of Bill, so I have a witness).  He will tell me about whatever it is that is amazing and awesome to him today- Finding Nemo, Jimmy Neutron, the Incredibles, or whatever.  He loves me, and in his own way, he shows me constantly.

But he is also growing up.  He isn't always willing to have me tell him what to do. I am about 5'5", or so.  Sebastian is slowly creeping up on me.  Soon, he will be my height, and soon after that, he will be taller.  The physical stuff is starting to happen- I try to take something out of his hands, and he takes it back.  It can quickly become a wrestling match.  I don't want this.  I stop it before it happens, but it is always there on the verge.  My word was always good enough before.  Now it's not.  He is becoming his own person.  I am so happy to see it happen, but I am also so very, very nervous.

Don't get me wrong.  My son is not violent.  He has never hurt me, or his sister or anyone.  He isn't a sociopath, or anything like that.  He is sweet and kind and gentle.  But he is also starting to know his own mind and to want his own things.  It is a struggle, for both of us.  We are both walking new ground, trying to find our footing.  We are trying to figure out how we can walk this path together.  Some days are better than others.  Some days, we just call a truce and move on.

But at the end of the day, there is Firework.  There is Katy Perry. 

"You don't have to feel like a waste of space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe you're reason why all the doors are closed
So you could open one that leads you to the perfect road."

Judge all you want.  This song was written for Sebastian.  I will believe that, to my dying day.

I love my little firework. Me and him, against the world.

Rosie N. Grey
The N stands for "never underestimate my son".

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