Wednesday, November 24, 2010

The last days of Fall

My favorite season draws to a close

The woods are spectacular this time of the year

But its all so transitory

Even as I wake up to this view from my bedroom window and wonder


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Was there ever a forest so gold ?

Was there ever a sky so blue?

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Even as I am within - enveloped on all sides -with this great beauty I am full of melancholy

As I know that this will pass soon enough

This really is my existential crisis .

I was talking with a few of my close friends the other day and we were talking about what our existential crises were

I was astonished to find that for most of us the fear is that this is it.

That nothing new-  no change is about to come

I, on the other, hand worry about the things that will change

For the present   - though daily worries may be plenty - is really as good as it gets

My family is well and happy and loving

I am much beloved by my husband and son

R - even though he has many challenges - is essentially a very happy child.

And for now we are able to manage most of his sorrows

I love the present

My existential crisis therefore, is the opposite

I worry that things will change

I go for a walk greedily storing up the forest in my mind. I know the next weekend when we  return to the cabin  the trees will be bare
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Oh how I wish I could make time stop

As I walk in the trees - I think about the lessons there are in the seasons

How there is a time for everything

And how all things must pass

I sigh heavily and turn towards home

R is waiting on the steps.

He is playing with his Little People Santa toys

He lifts his arms to be picked up

"Santa Claus is coming to town" he whispers breathlessly in my hair

For he is looking to Christmas with an eagerness that is infectious

And I think that this second lesson is even more important than the first one

To find and enjoy the beauty in our present is a good thing

To aceept that this beauty must pass is  important

But to know,  that there is beauty is every season

( For aren't the weary winters full of some of my favorite things too Christmas fun , vacation , snow, fireplaces,  crisp evenings, cuddles, scarves, soup, tea, cocoa, movies and Schnapps  )

That every season and every time comes with its own promise, if we look for it

That is the real lesson that the passing of seasons teaches us

"What the caterpillar calls the end of the world, the master calls a butterfly."
- Richard Bach

Tuesday, November 16, 2010

A birthday party, a trip to California and etc

A trip  to California

I had a conference coming up

And since DH and R have not seen California ever - we all decided to go along together

One of my good friends from Grad School lives there and we decided to meet up and see the San Diego Zoo


The weather was just perfect and my friend and her daughter were so much fun and the zoo was great

There are amazing animals at this zoo

I had no idea Orangutans were this big ( see behind us )
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But R was all whine and cling


All he wants to do is go back to the hotel . Plus he has woken up really really early.( 3.30 am ) because of the time difference between the coasts

He is finally happy when he saw something familiar in the zoo gift shop -
A Santa display !!!
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DH and I plough through things like this  discomfort though - new experiences are very very important for Auties and its critical not to to get stuck( trapped )  in our comfort zone

I repeated Temple Grandin's words in my head  - "keep increasing the web pages.. since autie brains can work like google images .. the more web pages there are the more they will have to work off of "

We are staying right next to the fabulous Gas Lamp district and the first day he does not want to take a walk at all
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He loves hotels ( the whole idea that there are the same chains in every place is a great comfort to him and he will spell out Hilton and Residence Inn or Embassy Suites with great glee everytime we go to one of these )
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Above he is in the pool which he loves.

He copes with the strangeness of new places - by finding patterns of sameness- as in he will only want to go to the pool or go to restaurants ( especially if they are chains that we always go to like the ubiquitous Mc Donalds )

But we firmly ( but kindly ) insist he go the first day

The remaining three days however he goes with aplomb and we have a great time - which is a great reminder that one must not give up - if things dont turn out well the first time with an autie. Its a sure way to limit ones world
( Think about it - example, if you think taking walks dont work - and try something else  - you have misssed the point . The child is not  really responding negatively to the activity but to the newness of it- and everything will be new if you try only once or twice. Consequently you will think "nothing works" and give up trying. This is something I learned from DH - as I am quick to give up   )

We do word hunts .

( In school they are doing T , I and P this week and so we do word hunts of these letters .( T and P are really easy - trash, table, train , tracks, etc or Parking , pedestrian etc , But "I" is hard and if we had not spotted an Indian restaurant and had  a beverage with ice in it - we would have been stumped )

His birthday is on Tuesday

Last year was the first time he had even shown the remotest of interest in a birthday and we have mistakenly assumed that we can just have a simple birthday party and he will be fine

To some extent he is -

We buy him a whole bunch of junk presents we know he will love like-  letters numbers, magnetic words etc

he lolls about reading his card,  most interested

He loves his  bag of tresasures .


We go to the hard Rock Cafe and have a little party for him
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But suddenly in the evening he bursts into tears and says "Birthday party surprise"

And so we remember that last year we had done a little party in school and realise that he must be worried that he will have no birthday party

We promise a birthday party when we get back and collude with his wonderful class teacher ( no social request is every ignored . In fact R asks for so little - we usually do whatever he asks for as long as its not harmful )

The party

DH is simply an artistic genius  and cuts up the cake in the shape of a letter 6 and decorates it with his amazing cream cheese icing . DH is one of those cooks in whose hands  everything tastes beter and the cake is amazing

I tell the teachers not to send any home( for I am a fool for cream cheese )

R is thrilled when we arrive in school with all the paraphrenelia of his "Little People" Birthday set that he has been pretend playing with these past few days - balloons, birthday hats, themed paper plates etc .

It is a GRAND party
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A small kerfuffle breaks down over who can have all the balloons but firtunately we have come prepared with loads of extras and all sorrows are appeased quickly

Etc
One of the saddest things last month is that a couple we are very very close to are breaking up. We are having a very very hard time dealing with this as we love them both very much and they had a great marriage.

Sometimes I think that one of the most important things to remember about marriage is just how fragile it can be and how one has to keep working at it

People can never stop becoming a mother or a father no matter what their child does but people  can always stop being a husband or a wife.

The woods around our cabin are stunning this time of the year ..I go for solitary walks and eat up all the color
I look at the trees the way R has taught me to - up not at

So they are framed against the sky. Truly the greatest artist- the one with the most vivid imagination -  is nature

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I find great peace in the woods and the sound of the wind

Its as though the trees are saying.

Slow down - why do you worry so much ?

What's with all the rush ?

 Do you know how many people have walked these woods thinking how important and big their worries were? Do you know how wrong they were? Stay in the here and now. Dont worry about things that you have no control over.

And I return renewed 

Monday, November 8, 2010

Building a life around Strength

Here is a reposting of the Hopeful Parents post I wrote on Friday - so I can have all my posts in one place and I know some of you find it tiresome to be asked to  go to links


Do you remember the subject that you were worst at in School?
The one you dreaded
For me, it was Chemistry
When High school ended, it was such a relief to know that never again would I encounter Chemistry
I could move on to the things I was good at 
Things I enjoyed
When I chose my career – I chose a career where my strengths were myadvantage
And so, even though , I am not  a person of great gifts or any brilliance
 I play from my strength and I do pretty okay
However there are people who will be evaluated on their weaknesses all their lives
These are our auties
They are continually evaluated on verbal strength – frequently their great weaknesses
 ( Think about it - even when its unintentional - the game of life is verbal. For most  of the ways in which we measure Intelligence – are tests that areadministered verbally, require the child  to think verbally and often answer verbally. What a huge disadvantage this puts on a person that may think inpictures not words )
I would argue that our entire school curriculum is created for the verbal thinker
Auties  are continuously coached on social skills
If you think about it, they spend all their day doing things they are bad in
The curriculum and life that has been created for Auties is what my life would be – if the world centred around chemistry ( shudder!!! )
It seems we go one step further – we take their gifts and find a way to disparage them
We call them Splinter skills
One more symptom of a disorder
 “So what if he can read at 3 … everybody can read eventually “ we say sadly 
( never thinking that the same argument  is also true of speaking )
Parents of auties hold “becoming indistinguishable” as the highest goal
Just like everyone else" we sigh
Why ?
What if we  changed our mindset ?
What if we became okay with them looking odd and different ?
What if we  taught them enough social skills to navigate the world, but did not make it the fulcrum of their success and the core of their curriculum?
What If we focused on their strengths?
And help them build a life around that strength
“Don’t try to de-geek the geek “ says Dr Temple Grandin
For degeeking the geek is not only impossible, its ultimately cruel
No no no, I am not getting into the debate of autism being a good thing or a bad thing
Some of you may think Autism is simply a different way of being and some of you may think it’s a crippling disability
But whether we  think the former or the  latter – all I am saying is that –we can think of our child in terms of how they can build a life around strength
Rather than building a life around deficit compensation
We can find creative ways to harness their passion and turn it into a career.
 "I always sold my work, not myself"- says Dr Grandin in a conference I went to recently, "I always got in through the back door... I never passed an interview in my life "
When the game and rules of that game are so obviously loaded against  thedeficits of the children we love so deeply
Then there is only one  thing to do
Instead of just focusing on changing the child
We need to change the game 

Friday, November 5, 2010

On Hopeful Parents today

I am over at Hopeful Parents today writing on why we should build a life for our autistic children around their strengths
When I listen to words of adults who are on the spectrum like Dr Grandin, Dr Stillman, GTTO, Geekyhippie and  our own RCR among others .. its obvious that finding a passion is just as important (  in fact  maybe even more so ) for Auties than it is for Neurotypicals .
Our assumption is that each happy life has to be build on a foundation of great social skill
What if we changed our mindset
As my friend Kat says - "My child's life trajectory will be completely different than mine and that is okay  "
For what is important ultimately, is that our child can look at their life and see it as a happy, useful and  good life
If you have a minute to spare  please do go over there and read the article  here

Wednesday, November 3, 2010

Baby’s First Halloween


Well the "baby" is almost six

But that is what it feels like

DH and I have gone through the motions every year – not wanting to deprive R of an occasion that was so important to all children his age , yet suspecting that it meant nothing.

But this year – things have finally clicked

His class teacher said that they were doing "career day" for Halloween

DH and I smiled ruefully when we saw the note and exchanged raised eyebrows

However- we are good sports

And so we asked his therapist to show him a list of flashcard of "career people "

She said doubtfully that he showed some interest in the doctor

DH and I laughed at this for this is such an Indian stereotype – right after curry and spelling bees ( the joke goes – mom is telling daughter – "you can be Whatever you want ,……neurologist, general surgeon , etc and you can marry whoever you want – neurologist , psychiatrist, etc" )

SO DH went and got a costume

"Cant believe I paid 40 bucks..luckily its big enough so he can wear it for the next few years "

And so the day of "School Halloween"comes

DH has told R about being a doctor last night and has packed his costume in his school bag

But in the morning R keeps wailing and crying " no school .. no school "

We keep asking why he does not want to go to school

Finally he writes "Docter" on the frig


And then we finally comprehend – he thinks there will be a doctor appointment at the school

So we explain to him that he will be the doctor

We put on his costume – show him his name written on it R, MD

Oh how fast the tears vanish .

Knowing he will be the torturer not the torturee is all he needs to know

And school Halloween is great

On Sunday, for neighborhood Halloween, I am feeling too lazy

But DH forces me to go

"His teacher said he practiced" he says , working on my well-developed guilt muscle

R is absorbed in the intricacies of using "ou" and "ow" in words on a video he has found on youtube and tells me "no costume "

At his moment a HUGE gaggle of kids comes to our house in costume and as I hand out candy

As soon as R sees these kids, his mood changes

He does his excited happy dervish dance and rushes to get his costume

Luck is on our side and in our first stop is Lucy and she not only makes a huge fuss of him but also has his favorite candy "blue raspberry dum dum"


R informs all our neighbors that "we wish you a happy Halloween "( this is a modification of his favorite Christmas song ) and stares at them unblinkingly –

He also refuses to take any candy ( since the Blue Dum Dums and Junior Mint are not being offered by any other house )

But he is so cute and they are so nice that we have a great time

And at the end of each visit he crows "more trick or treat"

I think of my friend Jos's words when she spoke about her daughter

I believe L will do everything, but in her own time. I don't mind … she can take all the time she needs … but I have faith she will do it all."

And she is right

Baby's first Halloween has come 5 years late

Baby's first Halloween has taken a dress rehearsal in school and 5 real life attempts - for it to take on meaning

But its no less joyful for that

Happy Halloween

Floortime Lite Mama

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