Thursday, November 3, 2011

Finding Peace


The other day I went into my old unused Snap fish account, to see a friend’s photo album

I came upon an old photoalbum  – from the time when R was 1 year old – and we were visiting another old friend of mine 

She has a beloved dog Abby, who is like her child- we would tease that R and Abby were cousins


Abby is  all sweetness and  was really patient with R

R, in turn, was entranced by her- that January of 2006

But later that year, as he had a regression and went down the road that would eventually lead to  an diagnosis of autism, he began to avoid dogs 

Neither parenting nor suffering is a competition 

But I believe, that the subgroup of autie mums and dads, whose children had regressions, have a very heavy cross to bear

( For readers who don't know  autism - there are some children who are born with autism.  Some other children develop typically and around 18 months of age have a regression into autism. And then there are some kids who are in between.  This topic also is fraught with controversy. ) 

People talk about the loss of language in regression.

But it  is more than that

How does a child know that they should look at a camera – and then stop knowing that?

How do they stop knowing what their name is?

When do you realize that the best way to talk to your 3 year old is to write to them – not speak to them ?                                                 

And how do they stop loving dogs?

This last bothered me most.

For I can deal with many things.

But for R to lose a source of joy.

That really hurt.

I  made peace with my new normal  

Surprisingly, found even more joy in this new life with autism, then life before

But, this one sorrow remained

Yet with time, this too is healing

Some of  this peace has come from reading Jill Bolte Taylor’s words in her powerful book “My stroke of insight."

In this book  she speaks of her stroke and her recovery

She writes

It was vitally important that I have…freedom to let go of my past accomplishments so I could identify new areas of interest..

 I needed people to love me – not for the person I had been but for who I might become.

When my old familiar left hemisphere released its inhibitions towards my more artistic side …I needed by family and friends to support my efforts at reinventing myself. At the essence..I was the same spirit they loved….

I looked the same..but my brain’s wiring was different now as were many of my interests, likes and dislikes”

 I read (and reread) this. 

I make it my new mantra and try to dissolve this last bit of hurt

I put my arms around all of this new life and hug it close to me.

Who R is today and what matters to him, is much more important than who he was

If he is afraid of dogs today – then so be it 

( Abby understands, I think ) 

R's sweet spirit, his gentle heart

The way he is learning everything back

Talking, playing, even posing for the camera

As I do his bedtime routine, he finds a cut on my hand and very concerned  kisses it better.

He settles on my lap with  request for a tight hug

Oh the joy of this child!

And I think, what's not to be grateful for?

The bend in the road is the end in the road....if you refuse to take the turn"


This post has been written for the Hopeful Parents website and will be published there on the 5th 

14 comments:

It's like this: said...

I completely know what you mean. With L, she has never truly regressed with anything.It has been a very slow, steady climb. But with C, when she loses things from regression, we rarely get it back--at least not the way we had it before, and it's a completely different feeling and experience for me as a parent.
Miss you!

Yuji said...

Beautiful post. Interesting insight from Jill Bolte Taylor. And yes, who your child is today is what is really important.

AutismWonderland said...

Absolutely beautiful! I needed this today...

Allison said...

Thank you. As usual, you inspire me.

K- floortime lite mama said...

darling L - must see u soon
Yuji and Lisa and alison - thank you so much for the kind words

Lizbeth said...

You are a wise mama. Very wise. Still doesn't take away the loss or pain of who they were but your insight does make me see looking at who our kids are NOW makes all the difference in the world.

Þorgerður said...

as always the here and now is what makes happiness :)

danette said...

Beautiful post... and very insightful as always. I can relate to those feelings after our experience with Bitty... love the quotes from the book you read.

robin said...

Love your post...the quote at the end and picture are awesome!

jazzygal said...

A beautiful, hopeful post. Your R is such a sweet little treaure, with wonderful parents:-)

xx Jazzy

kathleen said...

"I made peace with my new normal"...yes..THAT is everything! Lovely prose..as always...:)

D. S. Walker said...

I always love your insights and the love that shines through every post you write. Taking that bend in the road rather than crashing is not always easy, but it is necessary and having you along for the journey makes the turn less sharp.

Dorsey said...

Regression has to be the hardest scenario of all, I can't even imagine the grief it causes. Thank you for such an insightful post, it is written beautifully and will help others who feel they are alone in their pain. May they be comforted and continue on in their journey to reach the joy you have found.

Julie said...

such good words... <3

Floortime Lite Mama

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