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Wednesday, April 2, 2014

Autism Awareness, yadda, yadda, yadda

How much more aware do I have to be? I was no less aware in March of my son's autism or autism in general.  However, April kicks off Autism Awareness Month so I got to turn up my autism awareness to 11 apparently.  Can I slack off a bit come May?  That would be nice.  Mother's Day and all.

Pardon me for this jaded sounding post.  I mean, really, how can I not put on my Autism Awareness in it's "Rah Rah! Go Team Flappy Quirky" cheerleader face?  Isn't part of the reason I write this blog for awareness?   How rude!

Here's there thing, I am so aware of autism.  I am very much aware of it when my kiddo wakes me up 4 AM to remind me anxiously he would like to vacuum on Saturday. 

I am beyond aware of it when my kiddo starts pacing nervously around the house when I have to inform him of a sudden schedule change because a therapist canceled.

I find myself rolling my eyes with awareness when I get an email from my kiddo's school PTA asking me to make sure my son wears blue on World Autism Day on April 2nd.  Cause you know, he's not really representing how much he supports autism by just being autistic or whatnot. If you asked him what shirt everyone should wear for autism, he'd tell ya Tye dye hippie shirts.  He's got quite a collection.  Keep on truckin'!

My wallet is keenly aware of it when I bring in the mail and I see a stack of bills from credit cards we have used to pay for said above therapy.  Plus, the irony of seeing some fundraising letter from the folks of Autism Speaks mixed in there with them.  I think in the beginning we raised money and sent them some of our hard earned dollars.  Now I toss it in the garbage.  Hey Autism Speaks, I think you got enough from us.  How about some of it back?  How about not asking the very people who kind of need it more than you? How about not designing a new puzzle piece pin to give to celebrities who will wear it only one day and then probably forget about it? Here's your fundraiser for next year.  Don't waste the postage you paid to send this to my house.  I bet other families would probably join me on this.  You'll save so much money!

I'm very aware of it with each passing birthday of his.  I am aware of it when it keeps me up at nights worrying about his future.  I am reminded how much more awareness is needed each time some someone sends me a private message to the companion facebook page to this blog and it's clear their school just doesn't get it at all.  I am made aware of it every time I have to awkwardly explain and apologize  to someone we meet in public why my son tried to take their keys because he had the compulsive need to read the logo for the kind of car they drive on them.

I am aware I just want autism acceptance.  I just want the world to be well past being on a first name basis of autism  I want them to just get it.  To just be like "Oh autistic, okay, what I can to make this work for ya?"  Make it a case of no big thing and yadda, yadda, yadda.

Time to wrap this up.  I'm very much aware I need to get to the supermarket.  My kiddo is very aware that we are running low on french fries.  That's a bigger priority in this house than a blue light bulb. 

16 comments:

  1. Honestly, I think this post is ignorant. I raise awareness every day. I talk about it every day on my facebook, to my co-workers and to my friends and family. (As do you with your blog) If Autism Speaks didn't start this campaign, would people NOT affected by Autism even know about it? Probably not. Autism Speaks wants EVERYONE to be aware, not just those of us who personally are affected. I think Light it Up Blue day is amazing and helps bring one day of a little bit of joy to think "Wow someone is thinking of me" bc the other days of the year, I am not so sure. And why would they? why would people who don't have autism give me a thought, when they are busy with their own lives? Don't knock someone for trying to make a difference.

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    2. What's ignorant about it? She's a mother with an spectrum kid. This is how she feels about it. Don't hate. All of our situations are different yet we're in the same boat and for that we should never turn out noses up at another mother. We all work hard with spectrum kids. Please be kind the world can use more of it!

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    3. Sorry Mldonnelly, do a little research into Autism Speaks. Find out how much they actually spend on helping autistic people (4 cents to the dollar) and how much they spend on research to help aid communication (0).

      They want people to be scared and donate money to them. That's why they use fear to tell people they're lives are over. I think for all of us with kids on the spectrum every day kind of feels like autism awareness day... but I absolutely don't want to spread the time of fear mongering "awareness" that is the status quo at AS.

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  2. Mldonnelly.... trying to make a difference? Ha! Do a little research on Autism Speaks before you decide that they just trying to make a difference. Buncha selfish, money hungry creeps.

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  3. I just wish Autism Speaks would give me some money to help pay for therapy. Or autism summer camp. Or um...college classes. I'm aware! Send me some money please!

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  4. I don't find the post ignorant at all. It is a way to vent and I agree that all this awareness going around is often nothing more than someone posting a pretty pic on their Facebook wall for a day or a plead for money that goes who knows where and for who knows what. Where is this awareness when a mom is in the middle of the grocery store with a child in full meltdown mode and people are looking at her like she's a terrible mother? Where's the awareness when the school gives parents a hard time over making accommodations for their child? Where's the awareness when a child can't get the treatment or therapies they need? I know we have to get the message out there for any of this to change, but it feels like a slap in the face sometimes. So don't be so harsh on someone sharing their frustrations because I can tell you she's not the only one who feels that way sometimes.

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  5. In the first years after my son's diagnosis, our family and friends raised over $10,000 walking for Autism Speaks. But no matter who I talk to in the autism community, no one can tell me a single thing AS has ever done for their family member with autism. Where does the money go? Yes, AS has done an amazing job raising awareness, but now people are aware and families need real help and answers.

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  6. OK I'm totally stealing some of these quotes! Thank you for your wit and humor! And I too love me some french fries!

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  7. I don't light it up blue for me or for Autism Speaks. I do it for all those out there who are still so completely ignorant about autism. I understand why many don't like Autism Speaks, but I do like the light it up blue campaign. Not only do I have to help teach my kid, but there's a big part of me that feels like I've got to teach whomever crosses his path...from the curious to the complete idiots. If I have to start the conversation with a blue bulb or a t-shirt or a bumper sticker, so be it. That's just my feelings, but I totally understand your point of view. I had to laugh. At least your kid's school does SOMETHING for autism awareness. The teachers & principal at my kid's current school are so backwards it's heartbreaking.

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  8. Autism Speaks is a joke and I know this from personal experience. I definitely agree with this whole vent.

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  9. http://seanmacnair.blogspot.com/2014/01/boycottautismspeaks.html

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  10. I agree with this 100%. And his ABA therapist just cancelled today....

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  11. Nothing ignorant about Mama Fry. Want to talk about spreading awareness? Girlfriend has over 250,000 pageviews. She's done her share.

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  12. Sorry it's all words. I don't need words about awareness, I don't even need acceptance, I just need some practical help. Especially now that both of my ASD children are beyond the magic age of early intervention.

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  13. Sadly, it is frustrating to have these conflicting reactions to Autism Awareness campaigns. I agree with the author as I have a child with ASD and can hardly afford the therapy that can improve his life. At least I'm not alone in this quiet frustration.

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