We've had some "bumps" the last few weeks in our planning of this year's walk; with 1,050 members, we are sure to have a few of them. In the zen of my faith, I'm down with those. They open up areas of conversation I had never thought of before, which is a good thing!
The biggest concern... a group of young autistic teens/young adults who view the color blue and the puzzle symbol a support to an organization called Autism Speaks. Ouch... I'm serious. That really, truly sucks. That is not the reason PACE is blue with a puzzle piece... like, at all...
In the beginning, there was Mike and I. We had some support, especially from one very dedicated autism mom, Arlene Reid. She was pregnant with her third boy at the time, and eager to make an impact on Winnipeg. She shared our vision of organizing an autism walk, and we all agreed on 1) the color blue and 2) the puzzle piece, as we didn't want to "re-invent the wheel." People were already "aware" of autism, and recognized both the color and puzzle piece as a representation of autism. We wanted 1) immediate recognition and 2) impact the city of Winnipeg.
Of course we knew of Autism Speaks; the organization was responsible for the puzzle piece and the blue, but not the way we wanted to be percieved. While wanting to maintain the easy recognition, we also wanted to take back the puzzle piece and what it represents. We didn't want people to "fear" autism, and we are certainly not fundraising for a cure; we are celebrating autism.
Say what???
To be honest, I don't care for the connection of the puzzle piece with the sense of there is a piece of the puzzle missing in my children. But I DO like two puzzle pieces joining as though they belong together to create a collage of life and belonging. Let's face it, the uneducated don't think my kids fit in our lives or belong. That's why we are taking back the puzzle piece to give it the true meaning, as puzzle pieces FIT TOGETHER TO CREATE SOMETHING BEAUTIFUL!
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| My gift to Mike on Valentines Day, the true meaning behind PACE and our logo |
I was, and am still disgusted with people trying to "fix" my kids. They're not broken, they're amazing! I do recognize however, my kiddos need extra help in school, and in life in general. They need to be taught things that the rest of the population takes for granted. It can be frustrating, and at times daunting in trying to get educators on board with our kiddos needs... but it's not just the educators... I've met some pretty arrogant health professionals I've had to advocate to for my childrens' needs as well. And then there's also advocating for myself as a parent of an autistic child to said professionals and some autistic individuals as well. We've come a long way in education, but we still have a long way to go to, and I'm too old to take on that responsibility. So we changed the puzzle piece...
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| Obviously, this is the Autism Speaks puzzle piece... |
Now let's take a look at PACE's puzzle piece...
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| Our puzzle piece is much, much cooler, plus we have writting in it: PACE (Parents of Autistic Children Everywhere inside the puzzle piece in different colors, and the writing again on the banner) |
Yes, our puzzle piece is blue, but look inside... There's red, yellow, green AND blue. We don't care what color you are, we won't judge you.
Our autism community is so very fractured... We have the floor time therapy in one corner, the ABA in another, and then there's the RDI and the Sensory Integration Therapy, Verbal Behavior Therapy, the list goes on and on and on... And then there are groups of autistic children who have grown into adults. Some like to be referred to as autistic and others like to be referred to as living with autism... It's a hot mess out there I tell you, and there doesn't seem to be any way to be be politically correct anymore. And we're not finished yet. There are those who want to wear red, and those who want to wear blue. And then we sit back and wonder why on earth the government can't get their $&*! straight... Seriously.
I confided to my friend Becky and Debbie through Facebook Messenger that I was really struggling in making people feel welcome and join as ONE LOUD VOICE on April 2nd at our 6th annual walk at the Legislative Building. I was frustrated, and felt like throwing my zen out the door. My friend Debbie encouraged my zen time, she and Becky offered their support, and Becky... Becky helped me decide to keep zen in my life, that it wasn't a crock of $&*! and to continue the path I asked Faith to guide me on. She allowed me to quote her, so here it is: "I hope that in your comments at the walk that you put in a plug for advocacy as a group. That collectively we can create change... If the general public can get MEC (Mountain Equipment Co-Op) to remove a product from their shelves, I am sure that we can advocate to have OUR tax dollars be put towards the needs of our children, family members and fellow individuals with ASD." Here's the link to the MEC story: https://www.theglobeandmail.com/report-on-business/mec-faces-calls-to-drop-outdoor-brands-owned-by-us-gun-manufacturer/article38110551/
My friend Becky nailed it! This is exactly why we do the walk!!! IT IS TIME TO STAND TOGETHER AS ONE AT THE LEGISLATIVE BUILDING! It is time to join together, as one voice, wearing red, purple, green, blue, yellow, pink (I LOVE PINK!!!), orange, I really don't care, come in costume, listen to Nirvana play Come As You Are, sing Kumbaya... All of us can agree on this: It is time the government takes a closer look at therapy to encompass ALL therapies, not just one. What works for one child may not work for another. Take it from me, I did floor time therapy with one of my children before he was able to speak and as he aged, it no longer worked for him, so we switched to ABA... Low and behold, floor time now makes sense again... Seriously. I can't keep up anymore. We need more EA support - not less!!! Quit taking our inclusion support workers away!!! Our children are becoming adults - they need jobs government important people who get a say in all this!!! Let's start there and see what else we can come up with.
See you April 2nd! 6pm, Legislative Building!
As always, consider yourself hugged,
Lou
