Wednesday, 3 April 2013

Rainbows and Jigsaws..

So Tuesday was autism awareness day as part of autism awareness month, April...I'm just going for the one day as most of my months are spent with creating autism awareness so to exhaust all my options on one month seems over zealous!

And there begins my blog subject today folks..Autism Awareness Day. Who is it for?

Is it for people with autism?

My personal opinion, No, its not JUST for those with autism. Of course, its about them and it encompasses them for the majority of its title. But autism is too far reaching in its impact to solely be a day for autistic people to celebrate and advocate.

I've just read a blog where the writer was using a massive dollop of irony to highlight the confusing messages this day puts out. Is it a day? Is it a month? Is it universal or just created by Autism Speaks so they can continue to promote research into cures for autism? Is it light it up blue or is it rainbows and jigsaws? Yes it was written with sarcasm and irony and cutting edge humour but the response from one or two people was without a doubt vicious!
The writer was branded as a Martyr Mom for thinking the day was about her. She was unceremoniously told it wasn't, it was about people with autism. Well, I'm sorry but I have to disagree.

You see, I'm not autistic but I have a great deal of autism in my life. My world is deeply effected by the diagnosis of my children. I do not say that in a way to provoke pity but if you've read any of my blog you will know that its as much an emotional journey for me and lee as it is for my kids. Any parent of a child with any kind of special needs, medical history, behavioural problem, birth defect, brain damage or learning difficulties carries these diagnosis with them too. Sure thing, our life isn't impacted in the way our child's is but its still impacted. Lee and I live in the same house as "autism" and therefore we live, for now and probably for the foreseeable future, an autistic life.
We have the lows, the frustrations of not being able to communicate with our child just as they cant communicate with us. We get stared at and judged the same way they do, in fact  right now I'd say worse than they do for no one blames the child, they blame the parents. We have a rigid routine. We fear going somewhere new. We are scared of the unknown. My fears and nightmares far outweigh my children's at the moment.

But we relish the highs. We live a "different not less" life and we are very proud of that fact. We share in the moments of joy through stimming, rocking with them. We get engrossed in the films they love. We practice intensive interaction so we use their language to communicate. We praise our children's every action and we've changed our lives to give them the very best.

Right now, my children can not advocate for them. No autistic child can unless they are high functioning and I'm pleased if that's you. But lets remember, my children don't reach that benchmark yet. Every autistic adult wanting this day for themselves started life as an autistic child and I hope they had a parent who changed their lives to live with autism as much as Lee and I have done. To now take that commitment and diminish it as the actions of a martyr is somewhat offensive to me.

I have as much right as anyone to raise autism awareness. For my children. And for me. And for Lee. And for their grandparents. For their special needs teachers. For the therapist that work with them. For the consultants that help them. For their peers and friends. For the people who campaign for education and health care. For those warrior parents who fight the system for their children. For those newly diagnosed families looking for someone who has been where they are now. And for everyone who has ever touched our lives and made that tiny bit of difference to the world my children will grow up in. These are the people that make the autistic adults who go on the advocate for themselves.

You can not simply take that away from the people who want to support those with autism. I am my children's voice as they do not have one. They may never have one. Or they maybe the person accusing other mothers of being martyrs, but I hope not. They'll have more respect for others than that.

This is me giving a speech about the experiences of parenting to young children with autism for Autism West Midlands on World Autism Awareness Day, 2nd April 2013. 

My children and I on ITV CENTRAL NEWS on World Autism Awareness Day, 2013 talking about the daily challenges and rewards off a family living with autism in their lives.


TLM said...

FANTASTIC POST! Very well said and I thank you for speaking up!

stacey sparrow said...

Another amazing post! Xx

Meandmine Asdinit said...

Brilliant Donna; you are so right in what you say. LOVE your blog - it really keeps me going :)

Oya's Daughter said...

Well done on that! I posted about it last year and was even accused of advocating child abuse (!!) because I didn't big-ups the Autism community. *sigh* But it's true, autism is just as much a spectrum of who it affects as the condition itself.

P.S. Love the hairfalls!

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