I will not be lighting up blue or adorning a puzzle piece today, April 2nd. When you live and breathe autism 365 days a year, it is tough to swallow one day when the world tries to show its support by changing their avatar to be an Autism supporter. When Autism Speaks helps with increasing resources for families like mine in Canada instead of merchandising the ‘cause’ and giving themselves pay raises, I might reconsider.
I understand for those who don’t know what to do to help, it seem like a quick fix. Then from April 3rd, until the following year they go for the next charity flavour of the month.
“Going Blue” wants to find “cures.” My six-year-old daughter is not diseased. She doesn’t need to be repaired. She/we need resources to enrich her life, help her gain independence and help her to communicate. I have never heard her say to me in words, “I love you mommy. “ She just says it with her body when she brightens from head to toe as she runs to give me a butt-clinching hug, her arms wrap around me so tight.
A local ‘renowned’ psychologist told me, when my youngest daughter was 3 years of age, she would never speak. My beauty says her full name and reads many, many sight words today.
She dislikes being told ‘no’. She loves The Wiggles and Doritos. At her tender young age, she doesn’t know exclusion. That’s my role as her advocate. You want to know how to help others and us:
There are so many local organizations that are looking for help. Ask at your local child development centers or health units for directions.
What to say to a local Autism Warrior Parent.
Here are two local places that are doing wonders for our families:
Pacific Autism Centre
Canucks Autism Network
Do you know if family who may have a loved one with autism or other challenges? Say Hi and introduce yourself. It’s okay to ask questions. Most parents are happy to answer them. If it’s a classmate of your child’s, invite them for a play date. If the parent hesitates, offer them to come over for coffee. It will do wonders for you and your child to find out for yourself just how beautiful all kids can be.
Start the conversation. Inclusion lessons begin at home. Autism does not define me for my daughter, nor for our family. We define ourselves.
Local Mamas in the #GVRD had this to say about April 2nd, Autism Awareness Day.
Dione Costanzo, mom of an awesome 12 year old boy, says, “ Forget the blue lights! How about a dose of reality for autism awareness day? I would like to share this series “Faces of Autism” which ran in the Vancouver Sun in 2007 – the year my son was diagnosed. This six part series was a wealth of information for me and for those around me who were trying to understand what we were going through. For Autism Awareness Day please take some time to read this series which is linked here and is a really good glimpse into the lives of people with autism, their families and some of the issues they face daily. Although this series was published 7 years ago it all still applies including the lack of medical coverage for autism treatment:
Mom of 13 year-old and 18 year-olds on the spectrum, Vicki Parnell says, “Do the blue lights serve any useful purpose for families living with ASD? I think most people are aware of autism. Maybe it’s time to move on to promoting acceptance and inclusion of people with ASD.”
Anonymous writes: “I worked closely with AS and after attending a ‘conference’ by them in Pennsylvania, I quit. Myself and two other ladies were flown to Philly to represent our ‘walk’ and attend what I thought was going to be a conference, discussing research and awareness etc. I felt more like I was attending a mass multilevel marketing sales meeting. It was a celebration of all the money made at walks and then a huge 2 day sales pitch on how to go after more money. How to market. How to net sponsors. How to get more $$$. We were even told that, despite being a newish walk and raising awareness and giving families a fun day out together, we hadn’t brought in enough $, and maybe they’d cancel our event. Before we’d left for this trip, I had approached a good friend, looking for sponsorship. He was skeptical and asked me many questions, one of which included ‘why does AS have its head office on Park Avenue in NYC, and not a lower rent area?’ I wondered about that too. So I went there very curious about their bottom line. Well, let me tell you, cocktails on trays, fancy appies, all food covered, all us Canadians being taken out at night for beers and dinner by our national leader, paid for with her AS expense card. The fact that we met several delegates from Hawaii and all over N.America who’d all been flown I. Heck, in my case, they couldn’t book me a decent flight home that wasn’t at 2am, so they put me up an extra night in the hotel, as they made all the arrangements. All of these things made me question where a huge amount of the fundraising really goes. I came home feeling terrible about what I saw as a huge waste of money. I have worked with CAN and they are so much more fiscally responsible. I work with another charity and we are soooo fiscally responsible that we never spend a penny without huge discussion. As someone who was on the inside, I did not see an organization in anyway concerned with awareness or programs. I saw an organization worried about generating money. I even asked one of the big up vp’s why they don’t hire more individuals with autism and was ambushed by my national rep later for speaking against the organization. The amount of $$$ spent at this event was astronomical. Over 250 attendees flown in, fed and housed, given prizes, swag, awards. Unreal.”
Want to know more about Autism? Ask away.