Tuesday, June 9, 2009

Folie A Deux or Getting Real

Folie a Deux - A condition in which the same delusional beliefs or ideas, occur simultaneously in two individuals who share a close relationship or association

Last night R is sitting on my hip after his bath , with furrowed brow, carefully considering his fairly elaborate wardrobe – wondering what to wear.

A few weeks ago I would bring him out 2 options as he sat on his pack n play . And he would point to what he wanted

But now this won't do anymore

He is very particular about his sartorial style and must consider ALL his options.

He finally picks a green shirt – with the picture of a cartoon snake on it and the word "CHARMER"

He runs his finger along the word.

"It says Charmer" I coo "It means you are so amazing that everyone around you is crazy about you"

( R smiles in a nonchalant way. He is used to effusive praise)

And crazy we are

I often find myself running to stand at the head of the stairs – sitting on the top stair – regaling DH who sits below on his Lazy boy – with some stunningly clever ( actually rudimentary ) thing that R did or said

DH – pretending to be matter of fact – but I see him visibly swell in pride will say "Ya ya he knows everything "

Evidently, entering the world of special needs has freed us from the laws of good manners that force parents of normal kids to either not boast about their kids – or atleast try to be subtle

We are free of these restraints and boast unashamedly to our friends

"He is a genius " DH is saying to his friend on the phone, shaking his head marveling " his favorite toy right now Is the globe – he can point out many of the countries"( courtesy Happy Monster Band )

If you hear us talk – you would never realize that R has ALL the deficits of autism( language + Social + stereotyped interest ) – and more( Apraxia )

In our eyes however he has many many strengths and is a gift for the world

DH and I suffer from or enjoy ( depending on which way you look at it ) this condition - Folie A Deux.

( I saw this term on TV recently on a crime show and can see how it – the term, not the situation -applies to us )

There are so many people in the media who urge us to get real about Autism .

To give up hope

To face the fact that our child may never be fully independent

Though I see the benefits of this in terms of planning for the future and getting the right kinds of support

I would argue that in everyday life this thinking is toxic

What is the big deal about Getting real or Facing the facts ?

Why does reality always have to do with accepting an unpleasant expectation ?

As though we are preventing disappointment by lowering expectations

Disability is not necessarily a barrier to happiness

Just as Normalcy is no guarantee of it

In fact the most indisputable fact and the starkest, most true reality is this.

All we have for sure, is this moment

The one that we are in right now.

And all we can hope for, is to live this moment with joy



Becki said...

"Disability is not necessarily a barrier to happiness
Just as Normalcy is no guarantee of it"

You are so right. So very very right.

aninont said...

omg,so well written

Juli said...

Yes. Simply Lovely.

Huriya said...

I agree with Becki.. that is a great quote!!

Anonymous said...

"I would argue that in everyday life this thinking is toxic."

You are beyond wise, Kajoli. Clearly Rohan is a beautiful blessing for the world. And he is also infinitely blessed to have you and Atul, as are those of us who get a little nibble now and then. :)

Your POV is always so refreshing, like a cool detox bath. lol


Julie said...

Beautiful post.

Niksmom said...

Ah, Kajoli, this really strikes a chord with me tonight! So lovely and so true.

vin said...

HI Kajoli,
beautiful post. I look forward to read your blog.R is so cute.

robin said...

Well, he definitely charms me! I look so forward to hearing about what he has recently done or is learning. I love seeing your view on his abilities and can also feel your hope and positive glowing through your words!

danette said...

I just love your perspective - so uplifting as usual. The quotes that Becki and Tanya mentioned are my favorites as well :).

essbesee said...

you are have such a way with words. I'm following your blog now - can't wait to read more of your wonderful posts!

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