Saturday, March 12, 2011

There are other choices

Last Sunday I was downloading Autism podcasts on my Iphone and I stumbled upon the famous Deborah Fein podcast on "Autism and Recovery" .

In this podcast , she talks about indicators of "Optimal outcome" ( indicators being no cognitive impairment, resolving language issues etc and optimal outcome being to become indistinguishable).

And, four years ago,  I remember evaluating R against each of those indicators

Desperately clinging to those that indicated that there would be an "optimal" outcome.

It seems strange today to think of how I clearly saw our life stretching ahead in front of us

 
Only two roads ahead of us

Road 1 : recovering from Autism and living happily ever after

 
Road 2 - not recovering and being en-route to  Destination Desolation. A landscape is marked by broken marriage, ruined career and lost friends

 As time passed  it became clear that we would not be among the "recovered" families who go on to write the books.
Those books that as a newly diagnosed mother I read with such hope and urgency

But even while accepting that Autism would be part of our lives forever  -the way I thought about  it started to change 

Aimee Mullins describes brilliantly on TED what I had started to believe was true

 
"Perhaps the existing model of only looking at what is broken in you and how do we fix it, serves to be more disabling to the individual than the pathology itself.. I think the greatest adversity that we've created for ourselves is this idea of normalcy. Who's normal? There is no normal. There's common. There's typical"

 
And so I started to look at my life, my child , and my marriage with own eyes

 
I also started to see that the road map I had been given was a faulty one

There was also a third road – that the first panic had not allowed me to see

 
A road where I see R becoming autistic and able, my marriage stronger, my relationships better and my life happier . All with Autism in it.

Autism is not a choice

But there are many other choices in life after Autism

Choices about the way we feel,

Choices about how it impacts  our marriages and our lives

All the time I spend searching

All the time the real answer was not out there

 
The answers were  with me all the time

In how I see things and how I feel about them

"The end of all our exploring will be to arrive where we started and know the place for the first time"
- Thomas Wolfe

 
Not to say that  this third road is always easy

Sometimes I get a mini-panic attack -thinking of all the things we need to teach and all the time I have not fully used

The Dementors of the recovery road call insidiously sometimes. " You-could-do-better-if- you-tried- harder" they whisper

 
I wind up this post as  R is calling me to come and play with his Santa Village

 
"Come to me my angel" he coos (using my usual endearment for him )

And his sweet voice is the only voice to hear

I write this post for the Danette's fabulous  SOS Research Blog .

Her blog topic for this month is on how invisible disabilities affects our family and life etc. 

In our family we have found that we must make choices in how we are affected

And the act of reflecting  and making deliberate choices has made our life a better one

31 comments:

Life in the House That Asperger Built said...

Beautifully written. Thank you.

KWombles said...

Great post!

Rachel said...

Is it a terribly wonderful thing that the parts of your family that may be "atypical", are the parts that you've shared in a way that make me utterly grateful that people like you exist in the world?

We should all be as loved!

Þorgerður said...

Well said.. though I am still clinging desperately to option one and not able to let go. I know that even with all the best resources... which I do not have access to ...only a little less than half can truly recover. So The best progress we can have is really the only true goal. And yes remember that life and happiness are different shapes and colors.

sharon said...

This is such a profoundly touching and eloquent post. I chose option 3 a short time back myself.

Big Daddy Autism said...

Nice job, as usual. I too am traveling down Road 3 and wouldn't ahve it any other way.

Anonymous said...

I love this - and I love your new blog look! -Lisa

Christy@The a-word said...

Well said! From what I've found the company is great on road 3.
:)

















;

Danette said...

Kajoli,what a wonderful post! I am so pleased to have you as part of the Best of the Best!

Dani G said...

Amazing. Love this.
xxoo

Looking for Blue Sky said...

I'm still searching...but probably should be accepting option 3 by now. Lovely post x

bbsmum said...

Wonderful. Thank you.

TherExtras said...

"And the act of reflecting and making deliberate choices has made our life a better one"

I would like to think that is true no matter which road is chosen, but I don't think that is true. Good intentions only pave roads 1 and 2.

Barbara

Lynn said...

I'm not sure that I would classify the impact on your marriage as a choice, since there's another person involved whose reaction you cannot control. It's difficult when your spouse chooses Road #1 regardless of your feelings.

Love you :)

K- floortime lite mama said...

thank you guys so much for the nice comments - adore your comments
Lynn darling -sending you a giant hug

Julie said...

love, as always. :)

Mommylebron said...

This a great post and such a wonderful perspective! I think that if we spend too much time on what could be's and what should be's we miss out on what is. Stopping by from S.o.S!

Secret Sunshine said...

My thoughts exactly. Beautiful post.

Tanya @ TeenAutism said...

This is brilliant. I'm always saying to the boys "Life is about the choices you make," and that of course applies to parents too!

Patty O. said...

I really needed to hear this! Thank you!

D. S. Walker said...

Kajoli,
This is beautifully written. The love you have for your son leaps off the page. I love your choice!

Emilie said...

I clicked on a link from Facebook to the SOS blog, then here to yours...what a wonderful surprise! Beautifully and wisely written. Thank you from a new reader :)

AmandaBroadfoot said...

Such a beautiful and articulate post once again. And such a positive message that needs to be shared.

I, too, started out believing that Road 1 was the only happy way to live.

And now, several years later, I find myself and my family happily wandering down Road 3, a road whose existence I didn't know about not too long ago.

It is here. And the wonderful thing about this road, as you pointed out, is that I've found a more positive path for MYSELF as well as my child.

My son is such a happy, joyful boy, he is making progress every day, and his final destination is something we can't find on anyone else's map. He's leading us there one step at a time.

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Stephanie said...

Autistic and able. Personally, I think the third road is the best way to go, where we let our children lead, showing us who they real are all along the way. And I think that applies to all children, not just autistic or disabled children. Self-determination and the right to be who we are is important to all of us. It's essential.

kathleen said...

ABSOLUTELY!! The third road..the road less heard about-but I think the road most traveled. :) Lovely lovely...thank you..:)

Maddy said...

It is a very bumpy road but personally I feel you're completely right. Definitely the best option.

Karen V. said...

This is my first visit here. Absolutely beautifully written. In the back of my mind I still wish for option 1 but in my heart I know that the third path is the only one that will leave us all fulfilled and accepting.

I'm so sorry it took me this long to get here from out there. Looking forward to following you on a regular basis.

sonidoinquieto said...

Wonderfully written, thank you :)

blackknightsbrood said...

"Come to me my angel" he coos -
I love this.

And how true, the urgency you speak of that comes upon most all of us back then - in the beginning.

We join you on the third road. And I am so grateful for your voice along the way, pointing out the beauty and hope there is here.

Martianne said...

Coming on over from Danette's BOB and must say I love the third road you've chosen travel. Awesome!

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia