Sunday, November 20, 2011

The Last days of Fall

Birthday Party 

For R we stopped having birthday parties after the age of 2 .

We started to do little parties at school - with is special needs class

This year though DH really wanted to have a proper birthday party and so we  decided to have a birthday party with some families

It was really low key and relaxed

R seemed to like the fuss - loved cutting the birthday cake, getting the presents, having all the amazing helium balloons that DH got for him

This is one of our new traditions - the cake shaped in the shape of the number he is

Most of the time he would leave the party and go to his bedroom

However when we asked him if he wanted a birthday party again next year - he said that he did !

I think that counts for something

A trip 

I had a conference and DH and R came along for the weekend - R had a wonderful time in the hotel which had 7 swimming pools

Have I told you how much R loves hotels ?

So when he talks about Christmas last year he always talks about Christmas at the "Double Tree by Hilton "


Such is the unique perspective of R !

And it makes me smile

Disney Boardwalk 

We go to the Disney Boardwalk on his actual birthday . Fabulous weather ..

Its just the kind of place that R loves

Lots of space to run around

Pizza on the water front where the ducks come to eat his leftover

Lots of lights

Dinner with R 

I take R out for dinner by myself a few times so DH can be by himself

 I cannot tell you how awesome it is and how different from years past - R reads books , colors and this year I noticed he even likes to take bread out of the bead basket

There was a time when DH and I just stopped going to restauants with R and I am glad we did that and just waited till he was ready

I think the autism parenting version of the serenity prayer  should be as follows

"God grant me the serenity to know what I need to teach now ;
and what I need to wait to teach till he is ready;
and wisdom to know the difference"

Sea world 

DH takes R to Sea world 

I text DH to ask him how its going and my heart sinks when DH texts m back saying that he was "All done" within 30 minutes and it was another 100 bucks down the drain

I sooo want R to have fun

But they also go the next day  and shamu is all R wants to talk about

The end of Fall 

We are at the cabin and the last leaves are falling around me

I have been filled with  a  general melancholy these days .

Work is stressful and I am not able to turn my work self off  when I get home.

DH always keeps reminding me to "leave it in the office" but its hard for me to do

Also I just hate the way time is passing by .

Why must it go by so fast ?

I am  astounded by the weight of  the maintenance tasks of life .

Nothing has changed really - working+ Autism + home is a solid workload-

What has changed these past few weeks -   is how I feel  about it

My friend Tanya  said  that she has been feeling the "impermanence of life" right along with the "permanence of Autism" and I really know what she means

I think of what R said when I told him that tomorrow he would be 7 years old.

He said " 6 years old is all done "

I felt tears pricking me eyes , but R wasnt sad

I know he is thinking about what year 7 will bring .

And that is the way to think

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 

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