Monday, May 17, 2010

I have a deadline...

I am procrastinating, by ruminating... and I have something to say (funny that...)

I'm working on a project at the moment, which involves lots of people in a similar position to me in terms of autism and parenting. I'm going through lots of heartfelt statements, detailing their lived experience and it's inspiring.

But it's also seriously sad.

It's sad because it seems like the world has very little faith in women and children. What's going to follow is a mass of generalisations and anecdotal, unsubstantiated statements but trust me... unlike Tony Abbott (our Opposition Leader for the overseas folk among you), I'm not making it up right now.

Again and again, I'm reading about mothers who faced derision and judgement when first voiced fear about their children's development. Some of it comes from within the family, and I can forgive some of that. No-one wants a massive issue in their family, and the first reaction is often denial. The nasty, unhelpful judgement comes from the doctors and the teachers.

It makes me wonder what's going on in the heads of some 'caring' professionals that they would dismiss a mother's concerns about their child. What would motivate you to question a woman who spills her heavy heart about her child? What are you thinking she is thinking? And what are you thinking the effect of your cynicism will be... that she'll stop asking...?

Sadly, may women do stop asking. Hideously, their kids can end up struggling through parts of their life, not understanding themselves and not being understood. Being thought of as stupid, or naughty, or bad...

If you don't stop asking, it gets expensive. Doctors visits, new referrals to different doctors, travelling, googling, struggling to understand. Hopefully, eventually someone gives some information that leads to understanding.

It's not always about women being ignored, though. Often there's a pile of denial involved too.

Occasionally,  I hear a parent, quite offended and self righteous because someone dared suggest there might be something spectrum related going on with their child. The tone is almost always the same - like there are teams of crazy autism seekers around the place, picking out perfectly innocent children and labelling them... Like there's something to be gained in calling as many kids as possible autistic.

So... what am I trying to say today? Apart from, I have a deadline and am procrastinating...?

I'm trying to say...

Dear... people, 

It's hard to contemplate the fact that a child might have challenges.  Especially if that child is yours, or closely related to you. 

So, listen carefully and compassionately when people voice their concerns to you. Chances are, they are not attention seeking or making it up. And if they are, they are in need of support anyway.

Watch their children without judgement, too, if you can. See how they navigate their way through their day, how they use their bodies, how they react to their peers. Listen to what they say, even if it's not yet words. Look in their eyes, if they will let you. 

You are not helping by doubting. Nor are you helping by brushing off concerns. 

Just listen, reflect back what you hear, offer your shoulder, don't be afraid of anyone's tears... you have nothing to lose.

And there's a lot at stake. 

Cheers, Valerie  

I'll just pop out and mail this to... the world. That should add to the procrastination nicely!


fionacrowls said...

Awesome Valerie!
You can stick some dynamite up the bums of the people I come across everyday whenever you like!
God know there are so many people that should read a letter like this!

Lisa said...

Ha ha. I'm a crazy autism seeker!!!

Well, yes, I am, but I've learnt to be wery, wery, careful when stalking people who don't know yet how to recognise symptoms of autism across a crowded room (which would be their kid hiding under the table with hands over his ears, who is perfectly all right, thank you very much).

My post was (intended to be) more about recognising parents already dealing with autism, who are tentatively poking their family noses into the public arena, and hoping like mad that they're not going to run into ignorance and ridicule.

Mama Deb said...

Hey, Val--Saw your email on facebook and I didn't know about your project! So please email with more information...would definitely love to contribute!