Tuesday, February 16, 2010

Autism : Its been three years

Three years ago today in a bleak office - we learned that R had Autism

The doctor was stupid and insensitive.

He was telling us about Autism while telling R not to play with the blinds

We were shocked

Like I mentioned, his office was bleak

He had a large painting of a child wandering a black & white people-less world- all  alone .

I suppose the artist was trying to show how lonely an autistic child is

He handed us a book to read over the weekend ( for it was Friday evening and I suppose he was in a rush to get on with his weekend  )

 Full of outdated statistics (  like 73% of Autistic children have cognitive damage )  and full of dire prognostications,   "The world of the Autistic child " is probably one of the worst books for a parent to start learning about Autism

That weekend we felt like we had come undone

In the days that followed, our thoughts were dark and bleak

We kept expecting R to get worse and worse!

 One phrase from the book would run on "repeat" in my mind -

 "As the disorder unfolds....."

Would he become a child that would disengage from us and rock in a corner ?

But about a few months into the journey we finally mustered up the courage to ask our Early Intervention Co-ordinator

"How much worse will it get?"

Her answer was such a relief

" You have already been through the worst " she said " he will keep getting better and better now "

That was our turning point

I had so many questions then. Such fear

So much has changed

From an obsession - Autism has become an implicit part of our life .

Sometimes I think back over my life

There was once a time when I did not know what Autism was.

It seems impossible -

Like another life -belonging to another person.

And in many ways that is true

Three years ago today,  I spend all night crying .

How different tonight is-  I think while putting R to bed - with his arms around my neck !

His last words before drifting off  were a sleepy happy coo of  "Mother .. Mother ..." whispered against my neck.

Bliss . Peace. Contentment

Rather than crush me- as I thought it would

Its like the kaliedoscope of my vision has been shaken by the hand of fate.

My perspective has shifted

But life is in sharper brighter color

And I am loving what I see.


Becki said...

Thank God for your Early Intervention Coordinator.. I know the feelings you were going through and to hear that it would get better... Makes me remember some words spoken to me by our Early Intervention therapist.. as I sat scared and worried and she told me that he may have Autism but Autism did not have him... Wow. It gives me chills every time I think about it.

I read your posts and I see how attentive you are to R and his needs. You are such a great mom to him. 3 years and you have done great!

Anonymous said...

Thank you.

Lisa said...


Beautiful words K, you are an attentive, loving mother, the love you all share shines through in your posts and in your pictures.


JAMR said...

This has been a long road for you, and I am so glad that you find yourself in this wonderful place at this time. R is so blessed to have such wonderful parents, such a wonderful mother, and you are blessed, in turn, with that precious miracle, R.

Niksmom said...

BEautiful. I love the love and the attitude you hold. xo

Brenda Rothman (Mama Be Good) said...

Absolutely gorgeous.

We had our share of dire predictions about Jack's health from doctors. And it was heartbreaking. Thank God they don't really know. But how awful for parents who think that doctors do know.

Queenbuv3 said...

It has been over 9 years since my son's diagnosis and I am so glad he is doing better than we ever could have expected. He is such a wonderful boy.

I hope that my son and our family give other people hope. Our son is severely affected by Autism but he is such a joy and is making progress every day.

Your positive attitude is helping other families see hope instead of despair, joy instead of sorrow when their child is diagnosed with Autism.

We did not have blogs or any of the positive images of Autism that you see now when our son was diagnosed. I would tell people he had Autism and they didn't even know what it was. I hope that those of us putting forth a positive image are helping show what Autism can be.

Autism does not have to ruin your life unless you want it to.

Keep up the good work and positive attitude. Your son will continue to grow and make progress because of it.

Stephanie O said...

I'm printing out your kaleidoscope analogy and putting it up on my cork board. I need reminders.

Anonymous said...

What a difference 3 years, perspective, and understanding can make.

So well said.

Þorgerður said...

You always write beautifully.
I remember that moment of truth with the same awful clarity. Clinical insensitivity is somehow worse... because they (proffessionals) really should know better.

Anonymous said...

Beautiful. Thank you for perspective and words of grace. May it be a comfort to many who are at the beginning of this journey. Thankful with you...

Julie said...

Just beautiful. I can feel your peace and I love it.

TJ said...

"Your positive attitude is helping other families see hope instead of despair, joy instead of sorrow."

Yes. <3 You are a real torch lady. <3

Rachel said...

Amazing what it feels like to look back to a moment that changed your life and realized just how much distance - greater than years - is between the YOU then, and the YOU now.

I can't be the only one who sees what an amazing parent unit you two are - and how much you are absolutely devoted to your son.

Ultimately, it isn't even about the book learning or the analysis of it all, is it? My guess is that you'd trade all of that for those sweet moments where he falls asleep with your name on his lips.

(You touch me with words in a way that I'm grateful for!)

stellarparenting.com said...

hope is so important, I hope that Dr. has learned since then.

robin said...

It's hard to imagine that it's been three years!!!

Maybe that doctor should get a copy of your blog (with a couple changes not to burn bridges) to assist him with the other families down the road.

I think you guys are doing such a wonderful job (as well as R himself) in this journey...

danette said...

Beautiful... the love you and your husband have for R, and the positive attitude you have toward helping him thrive, is no doubt a huge factor in his progress. I agree that sharing your thoughts and your journey is surely uplifting to others, I know it is to me :).

Þorgerður said...

Did you get my email address? I sent it as a message on your site

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