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Full of outdated statistics ( like 73% of Autistic children have cognitive damage ) and full of dire prognostications, "The world of the Autistic child " is probably one of the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.
Tuesday, February 16, 2010
Saturday, February 13, 2010
SOOC Saturday : Three magic words
The sisterhood of mothers whose children cannot speak well or at all.
We say this often
"When will I hear those magic words ....
I love you ....mommy"
Not me
I have my share of longings
But, those words are something, I have never yearned for
While R may not say those words
I hear them everyday
For more fun with SOOC Saturday, please visit Melody
Wednesday, February 10, 2010
The week of Feb 8th
Saturday and Sunday
Dreary weather and overscheduled and busy
Really little accomplished in terms of playing
We were out and about in the Smokies on Sunday and had a really nice time.
Not in the mountains but in the McDonalds there- LOL
R is a little carsick and we are all very tired though it was also Superbowl Sunday - the roads were all empty
Mcdonalds with its -what-you-expect-is-what-you-get food was such a welcome relief.
Plus real Coca Cola ( not the diet stuff ) always makes me feel better
When I am stressed or tired - I love sameness
Little wonder that Auties love schedule and ritual ( as ordinary life must feel pretty stressful )
Not just the food and the open space, but there was a left over Sunday newspaper -
I jumped on the jumble word and DH pounced on a crazy Soduku which had 5 sections
R ate 8 nuggets and we were all happy
I am usually very good with jumbles but this one eluded me and is still nagging me - TORROA
Monday
I had a work lunch at a Mexican restaurant where while I ate only half of the Chicken Quesadilla - it was an ode to Cheese ( and fat ) and has gone straight to hips
Thankfully Weightwatchers is starting on Friday and hopefully I will get some of this blubber off
I had gone to work REALLY early so I came home ON TIME
Woo hoo
I was chatting with DH downstairs when R hears my voice and came running down the stairs - I squeal with joy and twirl him around and around till we are both were dizzy
I tell him I am simply mad for him and in return he holds my face and kisses my cheeks and forehead in that enchanting way of his
Really he is a dream come true
R and I play for almost 1.5 hours before his therapist came - we jumped on the trampoline and played with the dollhouse in the playroom
R makes the father doll stroke the mother dolls hair and he puts their son on the potty.
As always, he throws the baby away and I am glad we are not planning to have any more children - as R's feelings in this subject have always been perfectly clear
We are having trouble going to sleep again and I think it may be time to try Vitamin M !
Tuesday
I talk today with a mum for over an hour - she is a friend of a friend and has got a diagnosis of ASD for her child and I get a lot of satisfaction in helping her find out resources and give her some advice regarding her son
I have got myself back in the mode of playing with R in the evening rather than all of us vegetating in front of our screens - interrupting - just for kisses and cuddles
Now, I think its time to move our interaction to the second portion of floortime which is not just following the child'd lead but challenging them to build greater circles of communication
Something that Stanley Greesnspan says in one of his podcasts is that
“if when you are doing Floortime with your child and you can predict the response that your child is going to make then you are not really doing Floortime…..if you can predict it then you are basically doing rote patterns of play not really Floortime… and the child is basically responding from a memory pattern.... not really creating a new interaction ”
which is the case when we are doing tickle /babysandwich games etc
So here is my challenge to myself for today evening - not just create the time and space for joyful interaction ....but also challenge him to build more and more circles of interaction
In the evening
This was interesting - we did do about an hour of Floortime - we went to the playroom and played - did little bits of pretend play and I followed his lead and tried to deepen the plot.
Example, when he would pick up the plastic ice cream cone - I would use a finger puppet to beg for some icecream so R would feed me.
If he would play with the teapot - I would become Elmo and use the Elmo doll to ask for a cup of tea
The only problem was that his attention would keep wandering to the next shiny object
From the bowling pins to Thomas the train to any new book ...............his interest would wander to the next shiny object
How should we lengthen the engagement with one activity ?
I really think some of it may be to actually redirect his attention back to what we were playing with and I will try this today
The ADD aspect of Autism is interesting .
It is my belief, that many Auties appear to have a deficit in attention - it actually does not- for R stem from a true deficit in ability to pay attention
But rather that he pays attention to the things he wants to pay attention to( like the computer ) - not the things that we want him to pay attention to
He was also sleepy and tired in the evening ( he has not been sleeping well at all ) and I finally broke down and gave him a 1/3rd dose of Vitamin M ( melatonin)
He was out like a light at 8.10pm
Wednesday
R slept through the night and and woke up almost 9.5 hours later.
As he went to bed early - DH and I were thrilled to get some TV to watch by ourselves
As though to thwart our pleassure in the evening - House MD and The Big Bang theory - our faves were unusually boring
I had a couple of meetings cancelled in the morning and asked DH if I could come with him to the Hanen program
The training however only lasted for less than an hour!
A few flurries of snow are enough to put the city in a state of panic and the school was sending kids home early
Really liked what I saw though .. some examples of how to modify your routine to enhance language
Frequently the trainer says - auties dont really understand words- but simply use contextual cues to understand what is happening
For example, they may not know the word "bed time " but are aware of what we do each evening .
So, when you say bed-time - along with all the activities around bed time - they guess that bedtime is happening though they do not know the meaning of the word
The solution is to - take some routines that we do everyday - use simpler and the same language each time
example
Another thing we learned was how to get more complicated and abstract concepts across in regular language
Like when we offer snacks to R
We could ask "which snack do you want"? and offer choices while labeling them hold our one chip and say - chips?- and remove it and hold out a pretzel and say pretzel ?
After getting the answer teach the words few and many - by asking "Do you want few chips or many chips?"( also giving a clue with a hand gesture )
If he says many reply "you must be hungry?"
Hmmmmm..... very interesting and I am excited to try all these ideas out.
I must say being an Autie mum is increasing my own intelligence !
Dreary weather and overscheduled and busy
Really little accomplished in terms of playing
We were out and about in the Smokies on Sunday and had a really nice time.
Not in the mountains but in the McDonalds there- LOL
R is a little carsick and we are all very tired though it was also Superbowl Sunday - the roads were all empty
Mcdonalds with its -what-you-expect-is-what-you-get food was such a welcome relief.
Plus real Coca Cola ( not the diet stuff ) always makes me feel better
When I am stressed or tired - I love sameness
Little wonder that Auties love schedule and ritual ( as ordinary life must feel pretty stressful )
Not just the food and the open space, but there was a left over Sunday newspaper -
I jumped on the jumble word and DH pounced on a crazy Soduku which had 5 sections
R ate 8 nuggets and we were all happy
I am usually very good with jumbles but this one eluded me and is still nagging me - TORROA
Monday
I had a work lunch at a Mexican restaurant where while I ate only half of the Chicken Quesadilla - it was an ode to Cheese ( and fat ) and has gone straight to hips
Thankfully Weightwatchers is starting on Friday and hopefully I will get some of this blubber off
I had gone to work REALLY early so I came home ON TIME
Woo hoo
I was chatting with DH downstairs when R hears my voice and came running down the stairs - I squeal with joy and twirl him around and around till we are both were dizzy
I tell him I am simply mad for him and in return he holds my face and kisses my cheeks and forehead in that enchanting way of his
Really he is a dream come true
R and I play for almost 1.5 hours before his therapist came - we jumped on the trampoline and played with the dollhouse in the playroom
R makes the father doll stroke the mother dolls hair and he puts their son on the potty.
As always, he throws the baby away and I am glad we are not planning to have any more children - as R's feelings in this subject have always been perfectly clear
We are having trouble going to sleep again and I think it may be time to try Vitamin M !
Tuesday
I talk today with a mum for over an hour - she is a friend of a friend and has got a diagnosis of ASD for her child and I get a lot of satisfaction in helping her find out resources and give her some advice regarding her son
I have got myself back in the mode of playing with R in the evening rather than all of us vegetating in front of our screens - interrupting - just for kisses and cuddles
Now, I think its time to move our interaction to the second portion of floortime which is not just following the child'd lead but challenging them to build greater circles of communication
Something that Stanley Greesnspan says in one of his podcasts is that
“if when you are doing Floortime with your child and you can predict the response that your child is going to make then you are not really doing Floortime…..if you can predict it then you are basically doing rote patterns of play not really Floortime… and the child is basically responding from a memory pattern.... not really creating a new interaction ”
which is the case when we are doing tickle /babysandwich games etc
So here is my challenge to myself for today evening - not just create the time and space for joyful interaction ....but also challenge him to build more and more circles of interaction
In the evening
This was interesting - we did do about an hour of Floortime - we went to the playroom and played - did little bits of pretend play and I followed his lead and tried to deepen the plot.
Example, when he would pick up the plastic ice cream cone - I would use a finger puppet to beg for some icecream so R would feed me.
If he would play with the teapot - I would become Elmo and use the Elmo doll to ask for a cup of tea
The only problem was that his attention would keep wandering to the next shiny object
From the bowling pins to Thomas the train to any new book ...............his interest would wander to the next shiny object
How should we lengthen the engagement with one activity ?
I really think some of it may be to actually redirect his attention back to what we were playing with and I will try this today
The ADD aspect of Autism is interesting .
It is my belief, that many Auties appear to have a deficit in attention - it actually does not- for R stem from a true deficit in ability to pay attention
But rather that he pays attention to the things he wants to pay attention to( like the computer ) - not the things that we want him to pay attention to
He was also sleepy and tired in the evening ( he has not been sleeping well at all ) and I finally broke down and gave him a 1/3rd dose of Vitamin M ( melatonin)
He was out like a light at 8.10pm
Wednesday
R slept through the night and and woke up almost 9.5 hours later.
As he went to bed early - DH and I were thrilled to get some TV to watch by ourselves
As though to thwart our pleassure in the evening - House MD and The Big Bang theory - our faves were unusually boring
I had a couple of meetings cancelled in the morning and asked DH if I could come with him to the Hanen program
The training however only lasted for less than an hour!
A few flurries of snow are enough to put the city in a state of panic and the school was sending kids home early
Really liked what I saw though .. some examples of how to modify your routine to enhance language
Frequently the trainer says - auties dont really understand words- but simply use contextual cues to understand what is happening
For example, they may not know the word "bed time " but are aware of what we do each evening .
So, when you say bed-time - along with all the activities around bed time - they guess that bedtime is happening though they do not know the meaning of the word
The solution is to - take some routines that we do everyday - use simpler and the same language each time
example
- bath
- fill bathtub
- get inside
- soap
- finish bath
- empty bath tub
- Put letters, numbers in basket
- Lotion
- Shirt
- Pant
Another thing we learned was how to get more complicated and abstract concepts across in regular language
Like when we offer snacks to R
We could ask "which snack do you want"? and offer choices while labeling them hold our one chip and say - chips?- and remove it and hold out a pretzel and say pretzel ?
After getting the answer teach the words few and many - by asking "Do you want few chips or many chips?"( also giving a clue with a hand gesture )
If he says many reply "you must be hungry?"
Hmmmmm..... very interesting and I am excited to try all these ideas out.
I must say being an Autie mum is increasing my own intelligence !
Saturday, February 6, 2010
SOOC Saturday - Its all about love
The bride and I used to be roommates in Grad School.
We became really good friends through our mutual distaste for our messy third roommate and our common passion for Clorox wipes!
She dated Indian men ( like good Indian girls are supposed to )
But never found someone she could really connect with.
When she finally found her soulmate - he was not of her culture, nor of her religion - there was nothing in common in their backgrounds
But I get the feeling that this marrage is one for keeps.
Because its not about our differences
Its all about love
For more fun with Straight out of Camera Saturday - join Melody at Slurping life
Friday, February 5, 2010
The week of Feb 1
Saturday and Sunday
Are snowy
In spite of much persuasion and pleading - R will not come out of the house -The snow is crunchy and not soft and fluffy which is what he likes
He sobs "coputer" "coputer"( computer) and I finally give up.
He tries to get me to take off my jacket and hat.
I do not- as I want to go for a walk .He does not appear to notice my leaving but I sense he is suspicious that I am leaving the house( without him ) .
The walk is really lovely - I am the only person outside- there are no cars - no people .
Many people use fireplaces here in Tennesee and so the chimneys are puffing smoke gently
I have been watching Emma By Jane Austen on PBS ( my least favorite heroine-because of her snobbery and manipulative ways and the dreadful advice she has been giving to Harriet Smith - who really would not have refused the farmer's proposal had it not been for Emma and her meddling ways ).
I imagine I am in 1815 ( Emma's time ) .
I look around the snowy neighborhood and imagine it is the cosy village of Highbury. Inside these houses are ladies in gowns gossiping gently over tea and crumpets.
I can see them in my head.
I have a delightful time imagining the clothes of the lady in the house I am just crossing ( the lady inside is lovely 80 year old woman who paints her nails bright red and talks volubly about her late husband and his many virtues and her present children and their many flaws- but I find I can easily picture her as a matriarch - a benovelent tyrant in a hat with a long feather )
My reverie is broken when my cellphone trills and I have to time travel 200 years back into the present!
My suspicions ( about R being worried that I had left the house without him ) are well founded .
DH asks me how much longer will I take as R is sitting by the window wailing "Mother Mother"
I resignedly say that I will walk back but DH calls a few minutes later to tell me that the apparently inconsolable and distraught R has given up crying and is squealing with joy over you- tube !!
Such are the hearts of small children.
And I am free to ramble along the gentle hills of my neighborhood for some more time
I have to postpone our team meeting( our therapists and ABA implementor meet every couple of months ) becasue really there is no way of driving on this snow
On Sunday afternoon we are finally able to meet and its all icy and gross- but safe.
DH and I make red velvet cupcakes - he is a true artist and while I would just have glopped on the cream cheese icing - he arranges it with graceful swooshes and puts candied pecans on top of them
R's therapists are all thrilled with the progress he is making but they are also starting to realise what I and DH have been thinking about for the past few months- that we have more to worry about than just the apraxia
We remind everybody that just 6 months ago he had barely any words and we did not know if he would ever talk - and now we are grumbling about sentence comprehension
They cheer up rapidly
R strolls in majestically.
We all demands hugs and so and goes from chair to chair being fawned upon and kissed- and in general being King Tut
Monday
Is a terribly tiring day - I have a 12 hour work day and I come home spent and worn out
I realise that R's pizza is finished - as he is Gluten free - we need to make everything from scratch ( including even the pizza sauce as I have forgotten to put it on the shopping list - DH can tell from my face that I am in the last-straw-mode and he helps me a lot)
When I open the dishwasher and find that he has already emptied it - my mood changes and I feel loved and happy again
Tuesday
Is cold but sunny - I am able to come home from work on time and even stop at the eyebrow place so I can return my eyebrows to their state of glory.
Currently I could peel them off and lend them to Burt Reynolds for use as a moustache
My heart sinks when I see that the threading lady in the shop is the muscular butcher.
I worry too much about hurting her feelings and resign myself to pain
However the very large and very pretty woman she is currently working on has no such compunctions and tells her what a terrble threader she is -loudly and angrily.
I soothe the hurt feelings of the butcher when its my turn ( though tears spring in my eyes at the pain) as she works on my eyebrows with her usual brutality.
Still my eyebrows are gorgeous and its all worth it
I and R jump on the trampoline and using the techniques of Wait and Slow we have quite a game going
He tells me to jump high and jump low and is thrilled by my obedience and we spend much time collapsing with squeals and giggle
Wednesday
We play word games in the bath tub.
I try to start a game of rhymes and write ROW LOW
He will have nothing to do with rhymes as his current passion is opposites and so he changes it to HIGH LOW
Thursday
I am itching to clean the playroom and spend some time doing that ( and scold myself severely for not doing floortime - but what is a woman to do?)
I see what he is watching on You tube - which is a song titled - do you know the number of your house?
We hunt out the number of our house and then play with bubbles in the bath till bed time
It amuses me to see the paraphrenelia that R collects to take to bed - the number 8, a Little Einstein Book( the adventures of Melody the Music Pet ) and a picture of the Solar System
I know he has a disability
I know this in my head.
But in my heart his uniqueness and his special ways makes me feel like I have the best- most fun child in the world blessed with so many gifts
Are snowy
In spite of much persuasion and pleading - R will not come out of the house -The snow is crunchy and not soft and fluffy which is what he likes
He tries to get me to take off my jacket and hat.
I do not- as I want to go for a walk .He does not appear to notice my leaving but I sense he is suspicious that I am leaving the house( without him ) .
The walk is really lovely - I am the only person outside- there are no cars - no people .
Many people use fireplaces here in Tennesee and so the chimneys are puffing smoke gently
I have been watching Emma By Jane Austen on PBS ( my least favorite heroine-because of her snobbery and manipulative ways and the dreadful advice she has been giving to Harriet Smith - who really would not have refused the farmer's proposal had it not been for Emma and her meddling ways ).
I imagine I am in 1815 ( Emma's time ) .
I look around the snowy neighborhood and imagine it is the cosy village of Highbury. Inside these houses are ladies in gowns gossiping gently over tea and crumpets.
I can see them in my head.
I have a delightful time imagining the clothes of the lady in the house I am just crossing ( the lady inside is lovely 80 year old woman who paints her nails bright red and talks volubly about her late husband and his many virtues and her present children and their many flaws- but I find I can easily picture her as a matriarch - a benovelent tyrant in a hat with a long feather )
My reverie is broken when my cellphone trills and I have to time travel 200 years back into the present!
My suspicions ( about R being worried that I had left the house without him ) are well founded .
DH asks me how much longer will I take as R is sitting by the window wailing "Mother Mother"
I resignedly say that I will walk back but DH calls a few minutes later to tell me that the apparently inconsolable and distraught R has given up crying and is squealing with joy over you- tube !!
Such are the hearts of small children.
And I am free to ramble along the gentle hills of my neighborhood for some more time
I have to postpone our team meeting( our therapists and ABA implementor meet every couple of months ) becasue really there is no way of driving on this snow
On Sunday afternoon we are finally able to meet and its all icy and gross- but safe.
DH and I make red velvet cupcakes - he is a true artist and while I would just have glopped on the cream cheese icing - he arranges it with graceful swooshes and puts candied pecans on top of them
R's therapists are all thrilled with the progress he is making but they are also starting to realise what I and DH have been thinking about for the past few months- that we have more to worry about than just the apraxia
We remind everybody that just 6 months ago he had barely any words and we did not know if he would ever talk - and now we are grumbling about sentence comprehension
They cheer up rapidly
R strolls in majestically.
We all demands hugs and so and goes from chair to chair being fawned upon and kissed- and in general being King Tut
Monday
Is a terribly tiring day - I have a 12 hour work day and I come home spent and worn out
I realise that R's pizza is finished - as he is Gluten free - we need to make everything from scratch ( including even the pizza sauce as I have forgotten to put it on the shopping list - DH can tell from my face that I am in the last-straw-mode and he helps me a lot)
When I open the dishwasher and find that he has already emptied it - my mood changes and I feel loved and happy again
Tuesday
Is cold but sunny - I am able to come home from work on time and even stop at the eyebrow place so I can return my eyebrows to their state of glory.
Currently I could peel them off and lend them to Burt Reynolds for use as a moustache
My heart sinks when I see that the threading lady in the shop is the muscular butcher.
I worry too much about hurting her feelings and resign myself to pain
However the very large and very pretty woman she is currently working on has no such compunctions and tells her what a terrble threader she is -loudly and angrily.
I soothe the hurt feelings of the butcher when its my turn ( though tears spring in my eyes at the pain) as she works on my eyebrows with her usual brutality.
Still my eyebrows are gorgeous and its all worth it
I and R jump on the trampoline and using the techniques of Wait and Slow we have quite a game going
He tells me to jump high and jump low and is thrilled by my obedience and we spend much time collapsing with squeals and giggle
Wednesday
We play word games in the bath tub.
I try to start a game of rhymes and write ROW LOW
He will have nothing to do with rhymes as his current passion is opposites and so he changes it to HIGH LOW
Thursday
I am itching to clean the playroom and spend some time doing that ( and scold myself severely for not doing floortime - but what is a woman to do?)
I see what he is watching on You tube - which is a song titled - do you know the number of your house?
We hunt out the number of our house and then play with bubbles in the bath till bed time
It amuses me to see the paraphrenelia that R collects to take to bed - the number 8, a Little Einstein Book( the adventures of Melody the Music Pet ) and a picture of the Solar System
I know this in my head.
But in my heart his uniqueness and his special ways makes me feel like I have the best- most fun child in the world blessed with so many gifts
Wednesday, February 3, 2010
Learning to talk
"What do you want to do ?"
R's grandma is asking him some weeks ago . She is starting to get a litte frustrated as R does not anwer her .
After asking him a couple of times, she turns to me " he has the words .. why doesnt he answer?"
I answer " Becasue he does not understand the question?"
Its the truth.
When R answers questions - he is using memory of the context rather than pure comprehension of a sentence.
In reality, he mostly understands single words
For example, this evening when I asked him
"Do you want to jump on the trampoline or play in the playroom?"
Since its evening and I have my sneakers on he will use his memory of what we usually do in that situation - and his understanding of the two words "Jump" and "Playroom" that makes him answer -
"Jump"
As R's Apraxia is loosening its grip and we are getting more and more words -we are recognising the challenges of the next stage of language.
Comprehension of sentences.
I toss and turn over this quite a bit
It can feel disheartening
The feeling that each time we climb a mountain there is another new one just ahead
At the same time, when I look behind - I see all the mountains- seemingly insurmountable ones- that we have already climbed
And it gives me courage
I keep my eyes steady on what I dream of
Of talking to R ....Really talking
"Ah but a man's reach should exceed his grasp, or what's a heaven for "
- Robert Browning
R's grandma is asking him some weeks ago . She is starting to get a litte frustrated as R does not anwer her .
After asking him a couple of times, she turns to me " he has the words .. why doesnt he answer?"
I answer " Becasue he does not understand the question?"
Its the truth.
When R answers questions - he is using memory of the context rather than pure comprehension of a sentence.
In reality, he mostly understands single words
For example, this evening when I asked him
"Do you want to jump on the trampoline or play in the playroom?"
Since its evening and I have my sneakers on he will use his memory of what we usually do in that situation - and his understanding of the two words "Jump" and "Playroom" that makes him answer -
"Jump"
As R's Apraxia is loosening its grip and we are getting more and more words -we are recognising the challenges of the next stage of language.
Comprehension of sentences.
I toss and turn over this quite a bit
It can feel disheartening
The feeling that each time we climb a mountain there is another new one just ahead
At the same time, when I look behind - I see all the mountains- seemingly insurmountable ones- that we have already climbed
And it gives me courage
I keep my eyes steady on what I dream of
Of talking to R ....Really talking
"Ah but a man's reach should exceed his grasp, or what's a heaven for "
- Robert Browning
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
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
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
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 .
A MONKEY IN THE HOUSE
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
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
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
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
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
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
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
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