PACE (parents of autistic children everywhere) 2nd World Autism Awareness Walk, April 2nd 2014

What’s this?  Writing about April in October?  I know…  I’ve kind of been busy.  This post is only here thanks to Mike.  He turned to me tonight and said “baby, can I ask you to do something?”  Naturally, anything he asks I do, as he is just that amazing, so I say “yes, absolutely.  What would you like me to do?” 

“I want you to blog.”

“Say what?”

“When’s the last time you blogged?  You have people who read your blog and they’ve had nothing to read for months.”

“I think it was in the beginning of the year, I can’t remember.”

“I think you should blog.”

“When am I supposed to find the time?  Let’s see…  Tuesdays are booked with PACE kid gymboree and coffee addicts anonymous, Thursdays are respite night, Fridays we have Youth Group, Saturdays we take the kids bowling, Sunday is Church and Sunday School, then autism therapy in the evening…  That leaves Monday and Wednesday nights if I’m not working which I’d rather spend with you and the kids…”

He looks sad.  So I get out my laptop and work.

Wow, last blog post was in February.  I’m so sorry.

Now, where did we leave off?  Oh yes, the autism walk!  And I've justified posting this in October as October is Canada's autism awareness month, so here we go!

Last year we focused on awareness, as the month of April is Autism Awareness Month. To be honest, with 4 out of 6 kids diagnosed with autism in our home, my fiancée and I are very much aware of autism.  So this year, Mike decided to challenge us all at PACE to theme our walk around ACCEPTANCE AND UNDERSTANDING.  Easy for him to say, he didn’t have to come up with the speech. 

Mike in his generosity gave us 2 months to prepare.  No problem…  Yeah right…  All was well under way until 1) Anne told me a little less than a month before the walk she was going on holidays (my plan to have Anne as the PACE speaker every year just blew up in my face) and 2) I decided to make a craft with the kids at PACE Kid Gymboree night.  I had this brilliant idea of making a decoupage mason jar lanterns with the kids, and when I saw the finished product I turned to Mike and said:  “Aren’t these great?  Remember last year when we thought it was too bad we didn’t have anything to light the legislature blue with?” And just like that, with such naiveté, I signed the childrens’ sweat shop green cards.  For the next month and a half, we worked our fannies off to make one lantern for each family member who had joined PACE on Facebook.  At the beginning of February, that was 180 families.  So, we committed to making 180 “decoupage lanterns.”

Yes, they are beautiful.  The kids agreed the first two Tuesdays we sat down to make them.  By the third Tuesday, their tune changed, as did mine.  I tried to cheat; buying some blue glass paint figuring they would be faster and easier to make…  Turned out too messy and expensive.  Also, Mike really liked the “decoupage,” and I love the guy, so we went back to “decoupaging.”  I refused to let go of the painted jars though.  Every jar was important to the kids, so they are included in our 180 “autism lanterns.”

Reverend Mark and Suzie Sunshine

The sweat shop

Between working full time and co-parenting 6 children, I quickly ran out of steam.  My ever loving, doting man would not have me see failure, so he enlisted the help of our oldest daughter Ashley.  Mike and Ashley stayed up many a nights into the wee early hours of the morning “decoupaging” their hearts out.  Between the two of them they made at least half of our autism lanterns. 

While we had some of the autism posters from last year’s walk, many of them ‘disappeared.’  So, the kids and adults got busy coloring more posters.  Mike wanted 400 posters in total.  That’s 400 hand colored posters, pasted on precisely measured cardboard with decoupage glue (just writing the word decoupage makes me break out in hives), threaded and ready to wear by all the people walking the autism walk.  Again, the children loved this task the first two Tuesdays…  then I heard whispered threats of a lynch mob planning to get me…  Funny how that works, eh?  Mike makes the plans for the sweat shop, I pay the price with the children…  I do believe next year he will entertain the children while I plan. 

And then there’s the baking preparations.  Our master baker Arlene Reid baked 300 cupcakes, then made the blue frosting and decorated every single cupcake by hand.  

Arlene with my youngest daughter Athena

Arlene, Beverley, Jen, Mike and Judy

Through this whole process, I’ve learned something very interesting.  A writer can write, but that does not mean a writer can speak.  I wrote, tore up, crumpled up, cried over and re-wrote my speech numerous times.  I wept over the many trees I killed in the attempt of making the perfect speech.  If you’ve met me, you know I strive for perfection.  My original speech was over 2000 words (that’s about a 15 minute speech; never did get to finish reading it to my practice audience as they were working hard at hiding their yawns).  I was politely told to write a shorter speech.  So I wrote a 500 word speech.  Yeah, that wasn’t good enough either.   I needed more information.  When I finally got a speech of 1000 words, Mike didn’t like it.  He’s lucky he’s handsome.  So I wrote another one, and then another one and another one again.  I think I got to “take 23” when I finally threw my hands up in the air and emailed my friend and PACE’s resident sage Anne Fountain, who as I mentioned happened to be on holidays in Australia.  Lucky duck.  Anyway, “take 24” wasn’t too bad I thought, about 900 words; not too long with enough information.  Anne on the other hand added another 600 words.  That’s my friend, she’s got my back!!!

Here’s the final draft:

Autism is said to affect 1 in 88 children, and 1 in 54 boys, although I have read the latest report which states the rate is as high as 1 in 68. More children will be diagnosed with autism this year than with cancer, diabetes and AIDS combined. These numbers real and they are scary. They are the facts. And whether your child is an adult on the spectrum or newly diagnosed, each of us live with a fear for them as they grow older. My challenge for you today is to not only accept autism, but to gain a better understanding for those that you are supporting. I’m not saying to go out and get an education, I’m saying talk to us! Ask questions! And for the love of God, please, please don’t pity us. Pity turns to hate, and there’s enough of that out there already.

50 years ago, cancer was referred to as the “C word.” A devastating disease referred to as if it was a swear word. Some people still do. We have come a long way in accepting, understanding and even living with cancer. Thirty years ago, individuals were shunned worldwide due to an unknown ailment that was striking individuals to death. Children were refused into schools because of a word 'Aids' and no one wanted to take the time to understand. Then ignorantly we hung our heads in shame when we realized many of these people contracted Aids due to faulty blood transfusions and not sexual orientation. Autism has become this generations leprosy, Polio, Aids epidemic. People are afraid their children will catch our children’s disability. Society calls out our parenting skills. One of our mothers was referred to as a Refrigerator mom, meaning she was icy and uncaring of her child and if you knew her that is the furthest from the truth. What we need is your assistance, true helping hands and not unsolicited parenting advice.

If a child went into a diabetic shock/seizure, would you roll your eyes with your arms across your chest, huffing, all while blaming the parent or would you run to the aid of child and caregiver. If a child was having an asthma attack, would you question the parent why they took them outside that day or ask the parent how you can help! Then why do people question a parent giving their child with autism and ADHD, medication which helps them regulate their neurological issues, their anxieties, and their attention span in order for them to learn, to cope and to become contributing members of society? Why must they assume we’re “doping” our children because we’re bad parents? Why do they assume what our child needs is an extra dose of discipline or a good swat on the butt?

Let us play a quick game! Raise your hand if you used any of these items in the past 24 hours and keep them risen until I finish.

Electricity? House phone? Cell Phone? iPad, iPod, iPhone, iTunes or iSomething? How about music? Art? Literature? How many of you is that? Hmmm......interesting.

Now lets see how many of you have heard of these people: Albert Einstein, Bill Gates, Beethoven, Mozart, Van Gogh, Mark Twain, Emily Dickinson… all of these people were loved, appreciated and respected for the contributions they made to society and all of them have one thing in common… AUTISM! That’s right folks! Without that autism, there would be no lights, music, art, computers or our precious cell phones.

Children with autism develop and bloom to their full potential if their self-esteem, spirits and talents are not butchered by prejudice, judgement, and bullies. Acceptance and self-worth are two of the greatest gifts we can give our children..

I’m gonna let you in on a little secret most won’t readily admit… Parents of autistic children are lonely. We don’t go out to many social gatherings, as it is difficult to find care or we know we are going to corral ourselves into a corner trying to ensure our labelled children are behaving better than the rest attending the event. We slowly become isolated from society due to our caring role and lack of understanding from people in general. Sometimes it’s easier to isolate ourselves than have to deal with the comments, judgements and stares of others. As a result, we get lonely. It’s how Mike Wilwand and I met, and out of our loneliness we dreamed up something wonderful, something we couldn’t find in all of Winnipeg, so we created it ourselves… PACE.

Mike

PACE is about the kids and the caregivers who love them. It exist with the help of loving parents. PACE is about accepting each other and making friends, both for parents and children. For all of us to be true to ourselves and to be who we are and not the curtain we stand behind. Beverley Jacqueline first came on board with PACE at its infancy with her two sons and daughter. She is meticulous and organized. Arlene Reid came on board with us a year and a half ago, full of energy and ready to help create the first annual PACE World Autism Awareness Walk. The success of last year’s walk is due mainly to Arlene’s gifts of planning, organizing, decorating, baking and coloring while I sat in a corner with my blue puke bucket, barely able to color our posters within the lines Mike created for me. Arlene designed our beautiful banner. And finally, our resident Sage and last year’s guest speaker Anne Fountain came and joined our group about six months ago. Though she is unable to attend due to her adventure down under, we know her spirit surrounds us. She has spent many hours helping numerous parents of autistic children in Winnipeg with her time and 20 years of experience navigating the world of Autism. Finally, we have Jen Singh who’s joined us just a few months ago. I thank her for the autism chocolates which will add a few more love handles around my waist. These women are not just friends, they have become my sisters and their children are my nieces and nephews. I love them all and hold them close to my heart.

Sadly there are many individuals, we as a collective have come across that are not so accepting. They have been principals of schools, employees in recognized Winnipeg establishments, teachers, medical practitioners, owners of stores, well known Winnipeg athletes and even church congregations and their leaders. And then of course all those who wish to make their own financial fortune with the latest, greatest snake-oil treatment.

We are here today to thank those who have accepted us and have chosen to become more aware of what we deal with not just on a day to day basis, but also on a neurological moment by moment meltdown of our children. We are here to remind our towns, cities and provinces, we aren't going anywhere and when you want to push one of us, we are 190 strong pushing back. Autism is NOT a discipline issue, a disease, nor a definition but it is part of their DNA and it is our responsibility as a community and a society to help them become a contributing part of the next generation. Based on the growing numbers, most families will be affected and all of them are mine as well as your future. They are an investment we must all partake in to sustain our own future!

Each blue lantern you see lit tonight represents a PACE family who has reached out for support. Our message is simple: Accept us, be kind, and say hi. Be our friend.

We come in peace.  With cupcakes.  And coffee.

400 posters...

Consider yourselves hugged, 

Lou and family