Friday, January 29, 2010

The week of Jan 26th( how K gets her groove back )

Monday

Is the last day of being a lazy lump

Its fun to be a lazy lump though  and I have really enjoyed this time with just hanging out with DH - the more we are married the more I realise how lucky I am to be with a man that I not just love but also like ( which sounds so lukewarm - but really is all important)

We have a date lunch- I love Mexican food while DH hates it .

However there is a new Mexican restaurant that has opened called Spice Rack - (  many risque posters with voluptous women giving enticing looks)

So I text DH to ask him if he wants to go to lunch at the place with the hotties.

He agrees ( surprise surprise )

I am kind of embaressed while I am there - Part feminism and part puritanism are growing in me I think - though DH is very blase and European and makes fun of me !

Tuesday

Our Hanen Lady from school comes home - DH is doing the Hanen program at the school - I am very impressed that they are doing it - and am very impressed with the SLP too- very nice and very smart !

She comes and takes a couple of videos of us interacting with R

She tells us things we already know and they make sense -

But then she shows us our vidoes she points out what we are doing wrong in the videos and I am very taken aback by how many mistakes I make.

First, I  dont wait for R to respond but move on and repeat my question.

Second we  bombard him with words.

Our plan for the week is to

1. SLOOOOOOOOOOOOOOOOOW down our speed of talking with R

2. Waaaaaaaaaaaaaaaaaait for a response ( ASD kids have slower processors - and most parents never give them the time to respond ( she asks us to wait 15 seconds after asking  a question - just try it - 15 secs seems interminable )

3 Practise turn taking with a written cue

Wednesday

I come home and  am all agog to put my resolve into practise .

However R is embroiled in the Little Einstiens and their antics with a Little Totem Pole

I show him the two options on the whiteboard - Jump  or TV

He chooses TV .

So I craftily say that I am off to jump and wave the dreaded Goodbye

R wails at my departure ( for though he wants TV - he wants me around - available if he needs a cuddle - as well ).

He resigns himself to finding out what happened to the Little Totem pole later ( though he knows fully well how the story ends  - having watched this episode a gajillion times )  leaves the remote and while its icy outside-  we jump on the trampoline.

WAIT and SLOW is a really good technique - and I find it makes him talk more

Interestingly at the end of our hour he wants more and leads me to the playroom and the swinging etc

I am MUCH chuffed - for being more appealing than technology  is high praise indeed

Thursday

Is my 11th wedding anniversary - DH wakes up with a tummy bug and lunch at the Thai place is out of question.

Pity because we are both mad for Panang

Inspite of the sickies he gets me lilies and daisies - and I am just so deeply touched. He is such a good husband !With the roses my siter send the dining room looks like a flower shop and that is the way I like it

I come home at lunch and make him some lentil soup ( as I cannot put any spice in it nor any oil - it tastes horrible )

Our friends from Delhi come on skype

I  feel such love for them when I see their dear familiar faces- how wonderful friendship is

DH is so sad about the soup that I make another batch of soup in the night with some spice and some oil - this he eats happily

However all this cooking from scratch has left me with little time with R !

Even in that little time though - I realize the importance of waiting for a response. For R seems to need to finish whatever he is doing at that time before he answers a question .

Example: after I come from work and he does his happy jig ( which I join ) . This entails us prancing around the room in circles making silly sounds and giggling !

He wants me to roll around on the bed with him - so he gestures that I should take off my coat .( by tugging at it )

I want words so I ask - "off coat?"

But he is busy taking his shoes off and so I just pause midway thru taking my coat off- ( usually I would just have moved on.)

But once he has taken his socks off he looks up and instructs me "coat off"

Yippee

I have taken to verbally reminding myself that after I ask a question - the ball is in his court !

Ironically I have been listening to a Greenspan CD on my way from work which stresses the importance of 8 floortime sessions a day

How do regular parents of Auties get this much in ?

Some people who contact me after just getting their diagnosis ask

"how will I get 8 sessions in ? I work too- what about laundry.. cooking.... all the chores"

I always have the same  answer

"I know you dont have the time for 8 . Do you have time for 1?

Its this all or nothing approach that is to blame for a lot of problems in any good endeavours- be it losing 10 pounds, being a better human being, starting recycling etc ect -   and I remind myself of this  very good advice

Well I am getting late for work so I will sign off now

Monday, January 25, 2010

Getting back in gear

Its a lovely Fall evening, a couple of months ago

I am outside with R on the swings.

His therapist comes a little early and I need to go inside to get her some flashcards

"Just push him on the swing.. count to 100 ... oh and count backwards .. that is what he likes"

For R loves counting backwards

I suppose its the security of knowing exactly what is coming next.

Exactly 100 numbers from 100 to 0.

I suppose R will be very saddened when he finds out about negative integers

Where as if you count forward there is literally no end to how far you can go!

His therapist looks nonplussed

"I dont know how to count backwards" she says"nobody counts backwards "

And now I am taken aback

For counting backwards has been a favorite of R for quite a long time and now I am adroit at it .

Its just one of the many ways in which Autism has become an underlying but largely ordinary factor of our life.

There was a time when I would think about Autism all the time - what it was, why it happened, how to cure it and other questions like this. All the time.

I would read every book and research every method.

Desperately racing against time - trying to cram in all the knowledge of psychologists, therapists, doctors, mothers and fathers who had walked this road ahead of me.

So I could take advantage of the "plastic " brain ( that would irrevocably harden at  age 5, when all hope for progress would end! This is one of the cruellest myths that parents are told at diagnosis.

Then slowly over the last year Autism  has become somewhat implicit in our life

We just make sure that R has his written schedule, gluten free food , supplements, floortime and sensory therapy and other therapies - just in the way parents of typical kids think of and cater to the needs of their children

And then over the past 2 months - I have become - well to be honest -plain lazy !

From an  implicit factor, Autism sort of has become invisible

The long vacation in India - catching up from it and preparing for it have been  a tremendous distraction( along with the incessant dreary rain and the heavy load in the office   ).

And I have lost my good habits of parent therapy.

Instead, I have just been content to fritter away time, chatting with DH and watching TV and nibbling on Peanut Brittle and endless cups of tea.

Surely there is a wise balance.

A good point on the line-somewhere between the desperation of those early days and the inertia of today

Today his speechie submitted her report.

I am so grateful for this reality check.

Her crisp cool welcome words,  have woken me from the inertia that has wrapped around me like gauze

He has come so far. ( The child who did not know his own name, now has receptive language of a 2.5 year old )

But he has so much more to go. ( My  5 year old child has the receptive language of a child half his age)

No more excuses.

We are getting back in gear

The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.


- Robert Frost, Stopping by woods on a snowy evening 

Tuesday, January 19, 2010

Picture Postcards from Purulia

I hope you all are not bored  with my reminiscing

But as I am looking through my picture more memories come back

GIRL ON BUS





On the way from the airport to the railway station - the cab has stopped in a traffic jam .

Suddenly I hear a voice beckoning to me.

This is a welcome diversion from my thoughts which are all around constantly calculating if we will have enough time to catch the train

A little girl is calling me from a school bus.

"Didi "( sister ) she calls "Someone is asking you to look at them."

She points at a general area inside the bus

This is clearly a lie!

She simply  wants a break from the boring bus ride and makes up a story about someone calling me from inside the bus!

But I am delighted and then delight her by taking her picture.

She obligingly smiles down at me in the taxi. She is such a sweet looking child and I wish I knew her more

Does this happen to you?

Chance encounters with lovely people you will never meet again but wish you knew.

It happens to me a lot

What kind of person are you, little girl?

Are you loved?

Is  life is good to you ?


Goodbye at the Railway station





Here are my sister and her kids with an R who refuses to pose for the picture. My sister and I are very close and after DH, she is my closest friend.

Her kids are adorable and just so grounded.

My sister warns my nephew to stay away from the railway lines to which he replies calmly ( obviously well used to this drill ) "otherwise the train will come and crush me - turning my flesh and bone into one mash".


This bloodthirsty description is given with almost  relish and no sign of trauma - though the Westernized-me dare never say words like this in front of R


The stairs at Purulia railway station .






Notice how warmly clad everyone is!

Oblivious to the 65-70 degree weather and the incessant sunshine, Purulia dwellers complain about the bitter cold all the time

One person will greet another " Hey! How are you ?( and then without waiting for a reply )  "Isn't it freezing?"

"The icy wind is coming directly from the Himalayas and cutting straight to the bone" another will reply rubbing their hands both for warmth and dramatic effect

I am constantly urged to get a monkey cap for R ( ski mask ).

When I reply that its hot ( seriously, its 70 and sunny !!!) they look at great pity with R and feel sorry for him being saddled with a neglectful mother !


A MONKEY IN THE HOUSE

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Is there a monkey on the gatepost ?

Why yes there is!

One afternoon we are visited by a whole gaggle of monkeys - this is not such an astounding event for a gang of them come from time to time to visit our neighborhood

For the most part they are harmless- still not wanting to take a chance we all go inside and R and I watch with fascination

A wild rumor circulates that a monkey jumped on to our neighbour with great violence.

Much screaming and shouting and wild fleeing ensues !

It turns out later that the wife was taking a nap on the roof terrace. A monkey tapped her on the shoulder ( to wake her?)

When she awoke and found a monkey staring at her - she was stunned and jumped down from the roof.
Luckily for her ( but unlucky for the person who she fell on ) her fall was broken by her relative!

( This relative was  subsequently  the subject of much ridicule ( as being a person unable to distinguish between a human and a monkey)

When people here ask me if India really has elephants and wild animals roaming the roads - I disappoint them and tell them that its not like that at all. and that all the Indiana Jones movies that have fueled these fatasies of eyeball-eating Maharajas are fictitous

But sometimes it is


Goodbye mom and dad 



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My dad and mum come to say goodbye at the Kolkata ( Calcutta ) airport.

I am beyond touched that they come all this way .( 6 hours in a train from Purulia and then a cab and then all this waiting around at the airport - for a flight that is inevitable delayed by the fogs)

What a great blessing the love of our parents is!

And I think how lucky R is to be so loved by his mum and dad and his extended family.

Sometimes life feels harried and hard.

But  sometimes when I really think about it - I feel like I won the lottery of life.

For life hard as it is so so full of love and beauty 

Wednesday, January 13, 2010

More India Chronicles "The beginning of the India trip - Delhi and Dehradun

I am writing this from India  on our laptop - but  I have no internet so this will have to be published later

Friday


We arrived on Friday night after a truly terrible trip . My pulled muscle , kids who were crying so much I could have sworn they were being tortured , coach seats that were too coachy.

R’s behavior is not especially stellar( it’s a 15 hour direct flight) but its very good - especially compared to the other little monsters on board.

He sobs a little and will not sleep and keeps telling me to “UP” and indicates I should walk around the plane with him which I do.

He uses the potty on the plane successfully but will eat NOTHING on the plane

I and DH swore that next time we will fly Business Class ( though inevitably the next time we are booking a flight we will wonder if  10, 000 dollars more for what is after all just 15 hours is a waste is really worth it or not )

Right now we are focusing on the other side of the argument – which is that we only do this once in a few years , what is money for etc etc

This is an interesting example of perspective


Delhi is where we land

Our uncle picks us up. Its so great to see him ,

He is a natural master at Floortime and is able to quickly adjust his wavelength to R . He takes the balloon that I have blown for R in order to keep him close to me and puts it on the luggage carousel.

By this simple means he is trying to keep R close to us ( it works for a couple of minutes )

When this does not work he captivates R fully by wheeling him around in one of the wheel chairs..

 Really I am so impressed – this uncle is one complete angel who is always doing something for someone else

We are weak and disoriented and keep losing things( important things too like baggage tags , our passports etc  and  finding them again and losing them again ( though we do this cheerfully- such is our relief on being on firm ground again )

Saturday


We barely sleep a couple of hours before R wakes us up . He cannot sleep and will not let us sleep either ( he continues this for the next several days )

We go with Uncle to his very elitist club. Its very posh .

The driving to and fro is anything but . You need the reflexes of a marine to get around in Delhi .

Traffic lights are a suggestion , lanes are a faint hint and the horn is a mighty instrument of communication – running the entire gamut of communication from “hello” to “get out of my way” to  “ I shall now destroy  you “.

The main rule is that the larger vehicle has right of way 

DH’s primary messages through the horn are “ I am in your blind spot.. don’t crush me ” and “out of my way my car is bigger “ and “not a chance” when someone is trying to cut in

In the evening we leave R with the nanny of one of our friends – she is very sweet and nice to him and when we come back we find him sleeping with her. She has instinctively known that he will not sleep if he is by himself )

The party is a LOT of fun .

Our hostess has prepared a magnificent authentic Rajasthani meal which is to die for. They are Richie rich (for she refers to her “head “cook.)
– but very unassuming !

She is simply a darling and insists I cut the cake as we are a “VIP guest.”.

All this fuss over us is splendid and we enjoy  ourselves very much

It is really marvelous to see these old friends . DH went to( an elitist ) boarding school with them .
The guys are referred to as Doscos and the wives as Dosco Wives.
Luckily they are all simply marvelous and  I love all the Doscos and  wives in our group


We are up the whole night – Jet lag is really sucking big time!

Sunday

We spend the day with two really close friends of ours.

They are one of the things we miss most about India .

They have two wonderful children( the son with his gentle and charming ways reminds me a lot of R and is probably one of my favorite children to spend time with ).

Their daughter is a doll!

The son's learning style is not in the cookie cutter mould that educators seems to prefer ( though he is extraordinarily bright ) so he struggled a little in early school .

At 5 he and his mum were in the park one day and he sensed his mum’s anxiety and asked her to look around at all the trees ..
are they all the same … then why do you expect me to be the same as all other children”

How can you not adore this boy?


A. ( the wife ) is a fashion designer. She is featured now in all the posh magazines - vogue etc and   has shows in Paris and is slated as the hot new talent-  but is just the same warm generous unique person she was 10 years ago.
S - the husband is another completely unique person - strongly spiritual and just such a good human being .
Spending time with them is uber relaxing.  They say "friends are the family you choose " and this is true of S and A - and we drink endless cups of tea and coffee and chat

We wake R up in the evening : he is SUPER cranky - we even take him to the Indian Mc Donalds but he will have nothing to do with the McNuggets there ( though he loves them here AND when I take a bite it tastes EXACTLY the same )

In the evening my MIL and SIL return from the wedding .

They are true extroverts and are glowing from the 3 day extravaganza that was the wedding

They fawn over R – really the child is well beloved

This is the first night that we are able to sleep at a stretch and in the night !

Monday

We drive from Delhi to Dehradun – while this is a 240 km trip ( about 160 miles ) –

while the distance is not much – the roads are bad and he traffic is insane and it takes us 7 hours .

R sleeps a lot

We reach the Dehradun home


The dehradun home is really magnificent as aesthetics are very important to MIL and its all a gorgeous mix a teak and marble and art. Handcrafted too!


She also has several maids –all of who giggle furiously at everything .

The head maid greets me with a " you have become weak"( which is her way of saying that I have lost weight - this is the way a lot of the traditional East thinks of weight gain and loss -the bengali word for thin actually means "sick"- of course India is VERY westernized now and everybody is skinny )


Its such a change to have this giggling gaggle do everything – cleaning the house – doing all the prep work for dinner
They follow me around saying extraordinarily silly things( which I dont know how to reply to so I simply smile at everything - hoping to be discourage and yet not reject )  like

"Stay here madam .. we will also learn how to speak English"

R wakes up for a little while and goes back to sleep again and we can finally sleep !!



Tuesday

Arrives grey and gross – though we are finally well rested and my back does not hurt much

I go through the house looking at all the changes my MIL has done – for she is one of those people who are constantly in a state of progress.

I realize with a pang how much the child that lives 8000 miles away is the center of their world as R’s pictures are displayed with much pride everywhere

I try to help in the kitchen though my MIL pushes me away and makes an amazing lunch in a matter of minutes

While all this is wonderful – I cannot deny that I am very sad .

This is because R is sad . He has pointed me to the door several times and said “ go home” and this morning on our small walk he even says “go America”.

I simply cannot bear him being unhappy – I show him on the calendar that we will go home on January 9th and until then we will be in India .He is disconsolate though he does no cry or sulk.

Like me – when sad – he is simply low energy and listless

I truly believe that a lot of his pain will be alleviated when the internet starts working again and when he is truly recovered from his jet lag ( and also discover later that benadryl which I have been forced to  give him becasue of MIl's dogs - makes him depressed )

I buy some CD’s of Mozart and Verdi and Rassinoff .

On the way to the music store a beggar boy stopes me and urges me to buy a ballon for 50 Rs as his brother is dying - this is clearly a lie as his eyes are smiling.

But I dont mind. and buy the ballon at 10 times the price

My heart aches for these little children

 I write this on the computer while listening to heavenly Mozart knowing that some day when we have internet I shall be able to upload this

DH is off to the dentist

Wednesday

Arrives sunny and gorgeous – I take a chance and don’t give R any Benadryl – he is a lot more cheerful because of this

He loves MIL's garden and spends all day there playing with the flowers the garden hose etc

And as he is more cheerful – so am I

It’s a lovely day

MIL gets the maids to do the laundry cooking etc and all I need to do is make R’s Pizza and take care of him .- Which I am remarkably slow in doing

I do some speech therapy with him in the morning and also a little bit of ABA – this is slightly miserable and it’s a sharp contrast to the evening where we do Floorime and its all marvelous and fun

I really think parents should pick the therapy style that works for them . there are parents who are naural ABA parents and those who are natural Floortime parents and I really cannot imagine that there could be one who could do both

We loiter around after lunch lazily

We swoop( this is a game which involves me facing him – picking him up and swirling him around and around till we are both too dizzy

He loves my MIL’s garden and as he is very relaxed now he uses the few words he can

Thursday

I go to have my hair flatironed and blow dried.

Beauty Parlors are ubiquitous in India and as services are cheap this costs me very little

Two boys flatiron my hair .

They are telling me about all the changes that have taken place in Dehradun a small old-fashioned kind of place in the past few years

"Dating is the biggest thing now" - one boasts

"Where do you go to date?"I ask . Barrista?( India's Starbucks)

He gives me a sly look and says - "no one goes to coffee shops ... its all cabin dating now"

As he wants to shock me( since "cabin dating" involves amorous activity of a more serious nature than a coffee shop hand-holding  )  - I obligingly gasp with horror

"I have two girlfriends ".. he continues to boast .".just dating,  nothing serious"

"Do they know you are not serious?"I ask

"Oh yes" he admits ruefully ," she told me .. when I get married I can do better than you"

The second one tells me sadly that his girlfriend got married on the 12th( to someone else )  .

He was considering eloping ( her parents were against our marriage .. different community.. he says sadly ) but did not want to hurt his mother's feelings whom he loves very much

"Marriage is between the families" he adds piously

I really enjoy getting my hair done by these two boys for they are very very sweet underneath the macho bravado and I leave them a generous tip

Its interesting to see how while seemingly fully Westernised  on the surface - how in reality - India does not really change it merely layers- the new on top of the old

Society just keeps seeming to add new values on without getting rid of the older ones

India straddles, India strives

Friday

We go to Doon School  - DH's boarding school - very prestigious( for in India its the prestigious thing  is to go to boarding school )

Here is the school in the background

Doon becomes a family tradition and Doon school boys take great pride in sending their sons to Doon .

DH takes me and R to his old bedroom and shows us the sign where he in the list of all the prefects over the decades - his name is written in his year and he points to it proudly

I ask him if he feels bad that R will never go here and DH looks at me surprised and answers -" Not at all !" ( how I love this man !)

He really spends very little time mourning what could have been - because - well because its not !

Saturday

We drive back to Delhi - R is car sick !!!

In the night we go to another friends 40th birthday party . Parties in Delhi start at 10 in the night( dinner is usually eaten at 9 )

Its a very posh party and everybody is in Designer clothes. We notice security people and realize that
Priyanka Gandhi ( kind of the equivalent of the kennedy's- only much more hero- worshipped ) is there.

I restrain the urge to stare - we  have a good time and drive back home at 3 am( it is  normal for a party to end in the wee hours in Delhi )

The next day we go to Purulia - more to follow

Friday, January 1, 2010

My family and other animals- Purulia

A very happy new year to you all
Apologies for the long hiatus -

I am in India and will be back soon .

Hopefully will catch up soon with all of your blogs as well

Right now I am in Purulia with my parents.

Its a very interesting place and they lead a very full and  interesting life.

Its hard to describe India and so I am going to just going to describe some things .

While the title of this post is strange ( it is the title of one of my favorite books by Gerald Durell )  this is true of the life of my parents

Their only pets are goldfish and a snail

But my parents are terribly kind people and they are mentoring all sorts of creatures

These creatures have their timetable for stopping by

I will see my mother wringing her hands in the morning

"The cow has come -- I already gave him some lettuce .. but he is not going ..." she will sigh

My father will suggest " what about some bread?"

My nephew runs out to fed the cow scraps - he is fascinated by the giant purple tongue.

My mother warns of dire consequences ( in India no one worries about traumatizing children- the children are very untrumatized though and are camly oblivious to all the potential perils that adults lay out for them )  Be careful the cow has large teeth and may eat chew up your arm.. how will you eat Kurkure ( cheetos)then !!!

They also have a stray dog who dances with joy every time they see my father

Save this milk - Kalua( this is his name because of  his black color as Kala means black in Bengali ) loves Bournvita - my mother will say of the milk with bournvita that my niece has refused to drink

Then there are the  pigoens , the crows and the goats.. you get the picture

People stop by constantly .

The neighbor with a bad husband, the MIL with a fussy DIL etc etc.

The daughters of their maid who seem perpetually pregnant with all their problems

Monks and mendicants and beggars come to ask for foood and money and my parents are happy to supply all

A homeless schizophrenic person -  comes and says all sorts of things

My father goes to the gate and says "what do you want ?"

Dad comes back and explains " you must say something to him .. it makes him happy .. otherwise he will never go away "

In Purulia - Everybody know  everybody and you always show your social reference first - so to make an appointment at the beauty saloon you start with " I am the niece of ...and the cousin of " till they figure out who you are and then and only then di you state the purpose of your call.

It would be strnge and abrupt to just say what you want

How is R in all of this?

My fears of him being treated as strange are unfounded

He is the pet and the darling of all - nobody knows much about Autism - but they are kind and sweet to R.

Makes you wonder whether the kind of Autism awareness we are trying to spread on the west is really the only way to go or not

my sister's children also visit Purulia and are VERY good to R.

Though my nephew is VERY jealous ( my niece is very doting )

Why does everyone like R more ? he asks me

My nephew is very adorable and very rambunctous ( I have taken to paying him to be quiet - my sister and I are desperate for some time with each other and she does not object to me appealing to his mercenary side )

I was hoping to do some peer play with him and R - This is to no avail as R runs away always and I am left to complete the game with my nephew alone

My nephew is enthralled and addicted by Floortime

Perhaps no adult has played with so much attention before

And so he adores me

He wants to sit with me - get me to put him to bed.etc etc

He has proposed a few times as well - though I have explained the vast difference in our ages ( my 35 to his 6 ) and the fact that we are related - means this can never be. LOL

R is very annoyed by his brother - he is not too foond of his peers and dislikes anyone who competes for my attention and very glad when he leaves ( yesterday )

he loves his grandparents who fawn over him .

My father and R have a very special connection and I really love seeing them together

R is enjoying the fuss, the lack of demands, the incessant sunshine - for its 70 every day - his grans and the moonlit rickshaw ( a sort of an open carriage ) rides 

More about my trip later ...Delhi and Dehradun are completely and 100% different and require their own descriptions

Floortime Lite Mama

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