Feeling blue about Autism

It seems I’m not the only one feeling a bit cynical about Light it up Blue for Autism today.  Especially given the amount of money raised specifically just to light buildings with a blue light, AND doing so is apparently meant to make us autie parents feel better, less alone and the world better informed.

The autie mum in me is all for the Autism Awareness awareness campaign, I really am I WANT to be shaking that tambourine and I usually do.  Last year we raised $600 for autism awareness, but as someone who is always desperately clawing for services seeing money obviously wasted shits me, especially such a large sum (40 grand if you haven’t clicked the links above)  I think we can all come up with at least 20 services that the money could’ve been spent on.  Wouldn’t it be fantastic to see such crowd sourced fundraising enthusiasm for other causes?

Autism awareness campaigns are necessary. I deal with ignorance from somebody every other day, and not just from strangers, friends and family too.  Autism isolates families.  However I have always felt the people that are unaware of what autism means for a family or child, are people that we don’t need to have in our lives.

Here is my symbol of Autism, my four autie babies 🙂 I decided that they need a rainbow instead of being blue, because they’re anything but blue.

My rainbow picture of what autism means to me.

So while the parents of high functioning autie kids get to go to balls and dos tonight, sans kids because they CAN get someone to care for their child.  I hope they spare a thought for us autie parents with kids on the other end of the spectrum, who are sitting at home with their non verbal and incontinent teenagers, scrubbing poop out of the carpet for the third time today.  Put that on a flag and wave it.

If you wish to help out an organisation that provides services for Autism, head to ASPECT and check out their fundraising effort.

Some of you reading will disagree with me, and feel that the blue lights are important, and to those who hold that sentiment I have no doubt it is important. To you.  I don’t take issue that awareness is not important, I just snapped at the cash wasted on brighter lights than those offered.  That 40 grand could have sent a lot tired autie mums to a spa for the day… just saying 😉

To all my friends who lit their facebook pages up blue, wore blue, shared awareness info, had blue lunches, and blue events today, lit their offices windows up blue tonight, I thank each and everyone of you for taking on the cause.  Don’t let my crankiness dampen your enthusiasm, I am really grateful you care.

I will continue my autism awareness campaign right here on my blog, and hope that whatever I spew out into written words can help someone know that they really are not alone, because unlike a blue light you can reach out and contact me.

2 Comments

Filed under Autism, Rants & Stuff

2 Responses to Feeling blue about Autism

  1. I would once have agreed. But to me €40,000 would have paid for one year of 1-1 tailored evidence based therapy for one kid in Aus. However, if we all yap and write and say “Look at the Blue Opera House” (that enough people cared about to light up blue) then we can convince our friends, family, community and more importantly, Politicians and Civil Service that we are not going away.

    The fact the Premier was happy to light it up Green for a bunch of drunken Paddies on working holiday visas (I am married to someone who used to go missing on St Patricks Day in Sydney) and we can Light it up Red to kung hei fat choi – but they were only going to light it up pale blue for the 1 in 88 Australians who live with autism? Well getting the community to chip in and say F.U. was even more important.

    It is not right that you do not have an allocation of Home-Carers hours to have someone helping you out so you get a break on a regular schedule!! It is not right that so many Australians who have autism get a late diagnosis, in appropriate school placements – there are so many shocking inadequacies I cannot list them all.

    I also think that April should NOT be about shaking a can. I want world autism day and the pretty blue buildings (Including The Big Jesus – my favourite BIG thing in the world, after the Big Merino) well I want it to be about starting a conversation with my neuro-typical family and friends. A chance to say that the WORLD believes in autism and it is not because I let my kids watch teletubbies!! And what they could do to support me and my family in feeling included and loved. How they can get to know my kids better on their terms, how they can give me a BREAK!
    The Blue conversation also involves my community and their VOTE – to tell them that my children will not grow out of autism and will still exist the day they turn 18 and stop having access to services.
    This is my chance to say “Pay Attention to Me” (well you know I never shut up demanding attention) but they kind of have to stop and listen because it was on the news, in the papers, on the radio and yes, even the Big Blue Jesus in Rio says they have to listen.

    I get you, but this is my take.

    And I will babysit for you – if I can escape from my two. We can exchange tips on poo cleaning.

    xx

    • For all those reasons too Lisa I want to light everything blue, and have rallied to do so in the past. Starting those conversations is the most important part of the whole campaign.
      I just cracked the shits at them raising money to get more lights on top of what was being offered, because the lights (that I saw and thought was awesome in 2011) were deemed not blue enough. I stood in front of that opera house in awe.
      You know I won’t be able to contain myself and I’ll be flogging the awareness campaign all month, I’m already on to it.
      Don’t stop demanding that attention it’s one of the many reasons I loves ya so much 🙂
      I need you back here in front of a podium, seriously. Someone needs to have a voice here other than the quasi celebrity mums with high functioning autistic children, who get up and say…. well I’ll leave that there, you know where I’m going with that. Parents dealing with the BIG stuff need a bigger voice, the problem is we don’t have the time 🙁

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