Thursday 21 March 2013

Our Very First Annual World Autism Awareness Walk

We're doing it!  Never done before in Manitoba, we're putting together the very first World Autism Awareness Walk!!!

My God...  the work...  it just doesn't seem to end.  I've dreamt of making this walk happen for years, and now, it's happening...  Mike and our friend Arlene have done most of the work, making me feel a wee bit guilty, but I'm doing this with people I love and for people I love.

Arlene has looked after the permits for the walk and getting the permissions needed to walk from the Forks to the Manitoba Legislature building downtown Winnipeg.  She's baking 300 autism puzzle piece cookies and hand coloring each one.  She's designed, drawn out and in the process of coloring the enormous banner that will be carried by two children at the head of the procession.  She's colored many, many posters...

Mike's the artist of the group, and very talented in everything he does.  I'm still trying to find something he's not good at.  He's drawn up a few different poster designs, had them photocopied and colored many, many, many posters.  He's got a band for our listening pleasure at the Legislature Building, he's working on getting a generator for the band, full of ideas on how we should light the Legislature Building blue (blue is the color for autism).  He's got glow blue glow sticks for the kids.  He's making plans on carrying speakers and chargers during the walk to play songs written with autism in mind for everyone within earshot of the walk to hear.  He's approached Special Olympics and they too are coming to join us in our cause...

And then there's me...  I've talked to the two major autism organizations here in Winnipeg in hopes of organizing a united autism community for the walk and rally at the Legislature Building.  Unfortunately, they both have many projects on the go, and won't be representing their organizations.  I'm scouting for guest speakers and found one that I'm grateful to have made friends with.  Anne is an amazing, intelligent and well spoken woman whom I admire and respect very much.  She's the mother I hope to be one day to my children.  She's been through the trenches of education, advocating and laid the ground work for those new to autism.  Anne is a pioneer in my eyes, and I am truly blessed to have her in my life.  She's helped me in my private life, sorting through all the 'junk' of my life and thrown me a life raft a few times.  She's digging into her connections and got us more help in coloring posters, and may have a special surprise coming to the Legislature Building.  A hint:  plays a sport and wears blue...  That's all I can say for now.

I also sniffed many a'felt pens and colored within the lines as much as I possibly could.  A few times I missed, and with Mike's encouragement and Arlene's blind faith in me, they allowed me to continue coloring the posters.  Arlene's also going to let me burn (I can't bake my way through a paper bag) some autism cookies.

Isn't it interesting how Winnipeg's city hall lights up blue on April 2nd, recognizing the World Autism Awareness Day, yet the Legislature Building says it would cost $1000 to light up blue, so they won't do it?  Hmmmm...  So, it's up to us parents of children with autism to light it up their lawn blue for them!

Autism awareness...  why bother?  Everyone knows about autism, right?

WRONG.

I can honestly say that autism in the beginning freaked the living crap out of me.  I felt totally overwhelmed with everything life had to dish out at me, and making any decision including what to make for supper that night felt like a crisis.  Learning to pull the tears back into my eyes was a really hard trick to learn, but thanks to the chaos of my life and my ex husband's lack of support and his infidelity, I had to master this trick quickly.  I felt a desperate need for a primal scream, a good bottle of wine, and a really, really good cry.  A medically induced coma sounded like the perfect escape and the next logical step.  All that kept running through my head was 'seriously, is this really my life?'  Stress, exhaustion, anger, resentment, worry, anxiety, and going at it all alone even though there are people all around you every day, wherever you go...  that's the worst part.

There comes a time when you just need a cookie.  And the Lord offered me a sweet, melt in your mouth cookie, on a day I needed it most.  On this day, I sat there still stunned with my life, and wondered how on earth I would survive it all.  Did I have what it takes to make it or would this break me?  Did I have the strength and stamina it would take to take care of my child as his father certainly wouldn't.  He was far too busy worrying about himself, his job and his Call of Duty video games to pay attention to either my emotional pain of his infidelity or Dayton's autism.  It was Dayton and I against the world.  I was angry at God.  Truly angry for being all alone in this.  I threw (yup, I did) my bible against the wall in defiance, and it fell open at the foot of my bed.  Picking it up feeling totally guilty (I was born female and Catholic, let's face it, I never stood a chance.  Guilt is my middle name), I read the following scripture:  Isaiah 41:10  "Do not fear, for I am with you; Do not anxiously look about you, for I am your God.  I will strengthen you, surely I will help you, Surely I will uphold you with My righteous, right hand."   Hmmmm, cookie!  Thank you Lord!

I'm not the first, nor will I be the last parent who's felt the overwhelming urge to have a meltdown of their own when they're scared out of their mind because their child has just been diagnosed with autism.  But I do want new folks to autism to know that they are NOT alone.  We are here.  We're having the first annual World Autism Awareness Walk so that these newcomers to autism will see us, and know where to go for help.  They will know they are not alone.  They won't need to throw their bible at the wall.  More importantly, they will know that autism is not the end of the world.  It is not a death sentence, and can be very fulfilling.  Fulfilling?  Yes...  Every day is another day that I thank God for my beautiful children and how they make me who I am today.  My kids are what makes me smile.  Not a day goes by no matter how stressful and horrible where all I have to do is look at their faces and know just how lucky I am.

That's what this walk is about, and will be for years to come.  I am blessed.  My life is full, and I have like minded friends to help make a dream come true.

On April 2nd, I walk for Ashley, Katie, Amber, Dayton and my hips.  Who will you be walking for?



As my father taught me, consider yourselves hugged,

Lou

If you need more information on this walk, email me and I'll get back to you.


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