The Start of Summer in Seattle

Dear readers

May is the first month in the days since the blog started that I have not written at all

Not just me but all my autism friends – whether it be Julie, Four sea stars, Sturlungi, Once upon, Lynn Hudoba  and so many more

It’s as though we have made a collective decision to do other things

We worry about having said too much

Sometimes we have said it all and we have nothing more to say.

And sometimes life gets in the way

But blogging for me is as much a connection with you, as it’s a connection to me.

More, it’s a connection to the self that I want to be.

It’s a moment to stop and think about my life and where I am going.

Where is my energy, where is my focus?

So I don’t intend to stop writing anytime son

Thank you for reading and I promise to keep writing.

Going out

We took a day trip to Deception Pass and the Tulip festival in Skagit Valley. You guys it’s so beautiful. 

While these past almost 2 years now – have been some of the most stressful years of my life – a huge compensating factor has been the sheer beauty of this part of America

I will say no more and just let the pictures do the talking

Reclaiming weekends

Work is again encroaching into my personal life.  This is like the weeds that take over your life as soon as you stop weeding them out.

I have to do all the disciplined things again – turn my email off on the weekend – 45-50 hour intense work week is enough.

Some days I am so bedraggled after having been in meetings for 9 hours straight – I am just completely depleted and all I can do is just be.

Still I do the little things. I pause myself from getting out of bed instantly in the mornings – on Saturdays and Sundays-

 I bring in Nespressos for DH and me and we all sit together in this little love nest pushing away the hurry of the day 

Isn't the difficult world so much easier to face when you ease into it so gently?

I read happy books like the Harry Potter series, Merry Hall (Beverly Nichols)- (this book is in the 1940's and he is in the closet - a fact that is so obvious when he writes about how repelled he is by women's advances. But its apparently not obvious to these women) and find myself reverting to more gentler ways of being

We lounge in our hammocks

DH and I take long walks in the trails behind our house

Whenever we can - I find time for myself and nature 

Getting organized

DH and I are finally getting into spring cleaning – 

I have taken away about a 1000 books from R’s playroom that are the combination of not being loved nor being appropriate

R’s progress

In April we get notes from his teachers  saying he is not very social and that he will frequently go off topic completely – I am very upset.

DH – ever practical - works out some strategies with the teacher and he is doing so much better.

I am often reinforced in my belief as to how unsuitable school is for a kid like R.

 That he is either stuck “counting leaves” with all special needs lumped into one. OR he has to work with the very social special needs kids.

 Where is the child with classic autism and academic potential to go?

If we could start over, there are three things I would do differently – start speech therapy earlier, not send him to daycare and have a home based program for most of the day. We always had a home-based program but it was all after school and he was spending so much time and energy in school that there was not much left over for the rest.

I go for a meeting with his school teachers.

Fortuitously, his teachers have had days with him just prior to the school meeting where the other kids in the groups have not turned up. They have gotten to see a very different R – regulated, interactive and joyful

As such their impression of him is very different than it was before and they now think that he needs to be paired up with peer-mentors – not other kids with special needs – something we have been wanting to do anyway

I have been stressed about this meeting and have taken cookie brownies ( have you ever made these guys? So awesome) 

His center where he spends most of his time he is doing very well- lots of challenges in Reading comprehension but doing very well in Math and Science

Other kids 

DH and I always said that R was never interested in other kids. But there is a certain change in this  that we are noticing 

Play dates with other kids with Autism 

In R's social skills class there is another child whose parents we really like and so we decide to do a play date - This child is very sweet and they have the funniest interactions - kind of like a relay race. 

S will leave a bucket in the sand. Then he will move away.

R will then play with the bucket

And so on 

These funny little interactions are clearly enjoyable to both as the next two weeks they ask to play with each other again

He is suddenly into other kids as well - DH's engineering friends come for a trip to India and R is so enamored by "the girl". He follows her everywhere, her picture is now his screensaver and he tries to get me to mix some Sprite in her glass of water so she can have the little cocktail that is R's favorite thing 

 Ditto  our neighbors- on both sides of our house - we have found really accepting pleasant people who are completely unfazed by R walking into their garages to take a closer look at their cases of Coca Cola.R always takes pics of their kids as well.

Floortime and Autism 

What about Floortime? Well I would tell you how he was doing if there really was a lick’s worth of Floortime I was doing.

I am just too tired from work and now in the 7^th year of autism and the second year of Crohn’s some of my energy has fizzled out.

I just want to be mom.

And sometimes I just want to be.

Most days though we have a fairly interactive routine- so very much a floortime lifestyle.

Usually when I come home and the rain has held off - R is waiting with his picnic bag.

We take cupcake for R and small Sprite can and a bottle of Talking Rain (club soda) for me.

On evenings like this I get little gems from R.

We were drinking our sodas

He said “Sprite has 90 calories” and then he asked me “how many calories does Talking rain have”

I am  so proud

We make boats with a soap that he was carrying in the picnic basket. 

With a leaf and twig as mast. We pretend things are other things and act our little scenes - a bottle cap will become a hot air balloon ( my idea ). But then the doll will fly away (r's idea) 

 Even though his pretend play is primitive - it is very much present!

A high school student who is doing a project on R comes by to interview us. She is very impressed with us( or atleast very polite :-) ). 

As we talk to her, I think how much more we know than before.

Example - I used to think the question was about method -  what should we do Floortime or ABA or Sonrise. But I think just as important  as the  "what" question is the "who" question.

If I had an autism haiku  it would be 

Find the right people
Let them spend the right amount of time 
Make sure your child is happy

We are all sick today. 

And yet  I write this in my silent house when all the chores are done , the dishwasher and washing machine are set on their timers and my two sweets are tucked in bed with their cough drops and Vicks, all I feel is the blessedness of life when I stop rushing.

The pleasure of sitting down with a cup of peppermint tea and talking to you dear reader.

As though time was endless and I had all of eternity to watch each thought  come to life on the screen.

 I think of what his teacher told me " he is a happy little guy.. but the world is just going by too fast for him"

And I think, as much as we can, as long as we can we will slow things down.

You better slow down, don’t dance so fast,
Time is short, the music won’t last

The Start of Spring in Seattle

When we first moved here, someone told me that the hardest month here was June."

Surely summer should be here by now".

DH and I though- find that we don't mind the rain at all.

I think we were really sensible to buy the house that we are in -  not too big nor fancy - just right..

Lots of windows and light.

Its somewhere we love coming back to. Our Knoxville house is large and comfortable too but in that house we were always looking to go out and be in the backyard.

Saturday

A bit of a gloom hangs over this weekend as I need to go to New York tomorrow.

Oh how I hate traveling!!!

However-  I am speaking on an "expert" panel and that is making me feel very.grown.up.

Someone whom I once interviewed sends me a note saying she heard I was one of the "distinguished" members of the panel and this makes me walk on air

R is weeping beasue he cannot find the cupcakes we baked yesterday - they are on the stove and are just covered with a napkin. Once Discovered - all is well

R settles in with a cupcake and I settle in with my Espresso- my latest addiction .

Mother and son - We do love our pleasures

DH has been grumbling about my Nespresso a lot - he is not cheap - but he hates getting into these  relationship "traps" with companies.

He has already looked for how to make a DIY coffee capsule but its a real flop so now he has given in

We take R for his socials skills class which is in a bowling alley today- we are early ( we are "getting to be like white people now" I tell DH - as this is a joke among us - Indians are always 15 minutes late while white people are always on time)

We go to our date restaurant"The Guilt Trip".

Delicious Indian- American Fusion.

The owner comes out to greet us and tells us that the reason he calls it a guilt trip is because " you should come here once in a month - not every week .. but when you are here - please don't think of calories and fat" he says all his food is inspired by his mum.

We meet his charming husband as well who works for the company that makes Wii and we chat and he suggests that we bring R to the Nintendo store sometime.

A pleasant faced plump woman comes out - his mum- she is very traditional as I can see she is making a long string with alternating green peppers and limes - this is a traditional Indian recipe to ward off the evil eye.

The food is sublime and we enjoy ourselves thoroughly -

We walk over to Macy's DH has been jonesing for a Harris tweed coat and we go and try his size out - 44 is ideal.

Then off to pick up R who has had a good session .
We cook in the afternoon and watch TV which is our usual routine  and then the evening routine of
the sports club -
OMG this boy has a great sense of direction and he just revels in going into all the nooks and crannies of this large 4 story building .
The day is endless as I have to get things ready for next week since I am only back on Wednesday.

Sunday 

I gird my loins to go and DH reminds me that I will be really glad I went

We have started binge-watching Blacklist and we are halfway thru an episode when the taxi comes - evidence of the power of story is that DH and I actually speculate whether we should watch the next 20 minutes and be late to the airport or lot.

Its a gorgeous sunny day and of course NYC is under a cold wave.

R and DH come out to say goodbye and feel such a pang while taking the picture below, that DH tells me to go fast and not linger.

 At this unceremonious send off - I have to smile

By the time I reach the hotel in NYC - its freezing and 10 pm - the cabbie has taken me to the wrong hotel and insists on taking me to the right one gratis- he is of Indian origin and wants to look after me  - he is so sweet that I give him an extra generous tip.

I have not had dinner and Times Square looks bright and shining - so I decide to take a walk

OMG Its FREEZING and I have to buy hat and gloves for the princely sum of 10 dollars - The shop owner also tells me that he is charging me half price as I am from India as he is.

How nice people are!!

I pose in front of an Applebee's in Times Square  as DH and R are eating at our Redmond Applebees

I work till 2 am in the night and sleep like the dead

Monday 

The conference is very interesting to me but I want to not tell you anything about it as it will be horribly boring for you ( do I hear you sigh in relief?)

My niece - whom I last met when I was a 1st grader works-( so about 32 year ago )  in NYC and she comes over - Its SO lovely to see here - we eat dinner and catch up on our family.

My dad's side of the family is full of eccentrics and give you a lot to talk about.

We walk and walk - oh how I love the Sidewalks of New york.-- Above I am in front of the main New York Library which is the scene for so many Law and Order episodes.

 Once again  back in my hotel room and I have a load of work  and its 2 am by the time I am able to sleep

Tuesday 

Is the panel - all the other panelists look so smart - there is Verizon, ESPN, Huffing ton Post, Merck Lab and ordinary me.

The panel goes really well and I am super happy.

The interviewer is French - I sit next to him at dinner.

I think the French must feel such pressure to live up to the impossible standards to which the rest of the world hold them- we discuss the differences in French culture and American culture.

He says one of the biggest differences about the French is that they appreciate "melancholy".

"The feeling of the end of Autumn in Paris when everything is dying". He says that melancholy is a real experience while in other Western cultures there is a lot of pressure to be positive.

This makes me pause - as I am exactly the sort of person who urges people to "look on the bright side"

I see his point- that there is no reason to want to live in just one part of the emotional spectrum - even if its the most joyous one.

Remember the William Blake poem

Under every grief and pine,
Runs a joy with silken twine.
It is right it should be so,
We were made for joy and woe,
And when this we rightly know,
Through the world we safely go
In India there is a similar concept regarding sorrow ( the word directly translated means "pain" but I am not using it as its nothing to do with the 50 shades of grey :-) It will commonly be said "he can really not sing or act because he his voice has no sorrow"

We talk and talk and  - he describes his fiancee( Australian-Indian)  "who wants a pink diamond of all things"
I and a colleague get to accept an award on behalf of Microsoft for this ad campaign.

And I have my own assertive moment. As me and a woman pose- a tall  man comes and stands in front of us - completely blocking us - we both insist he move.

I am super proud of myself for being assertive.

Wednesday 

Is a mad rush - Lots of meetings and calls- I spend 6 hours on the plane.

DH and R have come to pick me up and I greet them with presents - chocolate for DH and Jelly beans for R.
R is very cool and relaxed.

Its LOVELY to be home - the house is so neat and clean - I am very pleasantly surprised -

I want to cook dinner from scratch as I am sick of eating the bland food of Marriott.

We cook and watch Blacklist and don't check email and feel the bliss of being home all around me

Thursday and Friday 

Are madly hectic days at work and home is very routine

Saturday

DH drop R off at the library - there is a petition at the library that I go to sign - the library is to be closed for remodeling and there is a petition to stop that.

This is something I love about Seattle - people are passionate about their books !!

As I come out a young man( obviously on the A-team approaches me) he says "My name is Steven .. what is yours"
He shoots questions at me and is very happy that I answer all of them without missing a beat.

He also tells me that since I am Indian I should say Namaste to him - we say Namaste solemnly to each other and I bid him adieu- I love autistic people - I really do.

There is such joy in interacting with them - they are so simple and so without an hidden agenda.

We eat at a restaurant that I love - not only do they have fried spicy tofu that is DELICIOUS - the tables are the EXACT same table we have at the cabin

Then we go to the mall and get DH"s Tweed jacket ( that he eventually ordered from JCP as they had original Harris tweed) and he looks like a prince.

DH says his shin hurts and " do you think I am exercising too much"

This is such a smug and pious thing to say - since he is very virtuous about all the weight he has lost and says sanctimonious things like "you should eat sweets in moderation" or " just eat one piece of chocolate instead of 5"

( knowing fully well that this is impossible for me. These sort of comments are  why fat people loathe skinny people - as they share this info with the air of giving you great wisdom.)

I tease him for the rest of the day saying things like "do you think I am too good a person for this world "?...." do you think that I may have become too charming"..."do you think I just love you too much"

 (These weak jokes are like the breath of air to our marriage - Does each marriage have its own language? Mine certainly does- I tell DH that if he were to leave me  - a huge slice of me would be gone- for that K exists between us and us alone and belongs only in this marriage - nowhere else)

Back home we cook and have to go to out for dinner as this is R's weekly ritual. He is very particular that we do not fob him off with a cheap dinner ( McDonalds/Spazzo) and go to a semi fancy place.

DH and I are aching for something sweet and such is our motivation that even though its raining heavily - I run into the store and get Ritter Sport White Chocolate(me), Toblerone( DH) and candy corn ( R)

At home we have our iconic moments - Bliss. Perfection is a good cup of espresso with white chocolate - a good show on TV and no chores.

Sunday

Is the first lazy day I have had in 2 weeks - I am tired at a molecular level - I wake up late -
R has got into the candy corn but I do not care.

We drink espressos and chocolate for breakfast and when R has his therapist we hike at the park.


You know guys - think I am falling in love with these gorgeous trees -

Their majesty - look how much taller these trees are than me.

 the queer quality of the emerald light - how on days of cloud and sun - you get these shades of green.

 the almost fluorescent green that the moss on the trees has

A bit of the sun has come out and R insists I go outside and set up the hammock. I do so - he points at a tiny sliver of space next to him and indicates that I should accommodate my considerable bulk in it

I negotiate that we can go and lie down upstairs in our bedroom- we loll about about reading our books and snuggling.

The sun comes out - R lolls about in a beam of sunlight that turns his skin to gold.

I ask him if he know what a gift from god he is to us.

R does not know rhetorical questions yet and he answers  "Yes"

Such was this week.

Days of my life: A week in March

Here are the bits and pieces of a week in my life

Saturday 

Today it was raining so much.

DH and I went to drop R at Social skills class -one of the things that I love about this class is that  DH and I have 2 hours of “we-time”

We go to Olive garden.

Right next to us were a more successful version of me and R ( Indians: thinner wife, kid that ate everything ).

DH was very upset that they have removed pork from the menu.

Anyone who thinks my husband is not an emotional man should see him when he has expected some pig based materials ( pork/ham/ribs) and then not given them . He grumpily ordered the Italian Sausage thingy and swore (very as-god-is-my-witness,Scarlett O Hara style) to never come to Olive garden again.

At home R locked the bathroom door. One day I locked our bedroom door and R was VERY upset and since then he has been obsessed with locks.

I threatened to not take him to Pro-club.I also asked him to face the wall for 10 minutes quietly - he is so funny and does this so seriously with his timer

Then DH chopped meat and veggies and cooked for the week - basically our lunches and R's dinners

I made

1. Chicken Taco soup ( lunch for me )

2. 3 stirfries/curries - to be eaten with roti for DH’s lunch

3. Kale+ Spinach+ Pepper+ chicken mix that R has for dinner

Then I took R to Pro club where he took pictures of elevators

R bought a massive cookie at the club - its St Patrick’s day here so he found a cookie in the shape of a shamrock – then he and I went and played with a basketball - it’s such a miracle that R can actually catch and throw a ball – for the longest time he just could not .

We played catch for a long time – when I came home I told him – that playing ball with him was the best part of my day – I asked him what the best part of his day was – he looked from his liquid eyes and said “ the best part was the Shamrock cookie"

We see a movie "Stuck in Love" 

I really like Greg Kinnear.

I am listening to "Enjoy every Sandwich” I just loved it.

Just finished "Death of a Perfect Wife" Hamish Macbeth series - oh how I love this series!!

Audio books are a great joy of my life

Sunday 

I woke up to see two large brown liquid eyes staring at me.

He got my Surface and my blue robe for me. R loves mornings where we all snuggle in bed with all our different devices and he wants to activate this as soon as possible

I skyped with my Mummy and my sister and baba -

R said his tummy was hurting. Crohn’s breaks my heart. My sweet child's insides are bleeding.

Today was IKEA day: I have been wanting to buy a bed for R - he has been sleeping on just the frame and the box forever. I really wanted to buy the ones with the storage thing underneath – DH thinks its too much storage(but he does not know that there is no such thing)

IKEA was exhausting. R wanted to go to Smalland ( IKEA play area).

Since his Crohn’s is back slightly, I am nervous to let him go somewhere where he will have to explain to someone about a bathroom and that he needs it urgently. But he was fine.

We browsed and bought steel espresso cups - the bed and some other odds and ends and before you know it was almost 500 dollars.

I consoled DH that at least the meal was free ( IKEA promotion).

But he was quite inconsolable - esp since the couple in front of us had not bought enough to get their meal for free so ran back to get some more items which means we had to stand for a long time.(and I had to listen to DH wonder in whispers as to why people are so stupid- This is a question he asks me many times a day.)

We came back and the sun was shockingly out so I took R to the park - it was so beautiful .

Finally the air is a balmy 50 degrees.

R of course wanted to sit in the most crowded section of the park - while I wanted to go to go to the other side - I asked him WHY he wanted to sit there and he said "because there are rooms of people"

We did jumble words - he said "No scrabble" I countered with "no sprite" At this fearsome threat he agreed to play.

Back home,  I washed all the glass dishes I had got ( this is my new fad - I want to get rid of all the crappy plastic dishes ) 

DH was piously putting together the bed - R had refused to help . 

So as a punishment -DH made him sit on a chair - minus all electronics( oh the Humanity!!!) and watch the boring activity of DH putting together the bed .  R wept and wallowed in self pity .

He mewled that I should come to him  so he could "smell her hair" . 

So R and I  put together a lamp- a very nice lamp and thank goodness I had not bought the awful lamp that he recommended( which when I asked him why - it was "because it was in  baby Wordsworth"

The bed was put together and it looks GREAT I think - R was SUPER excited- he kept running out of the bath tub to monitor DH's progress.

Then I read poems to R while he went to sleep 

He looked so sweet - that I take a photo

R put a hand in front of his face with all the ennui of a star to the fawning paparazzi and said "no photos"

Monday 

 So I never talk about my office days as they will be very boring for you to read 

The week-days - our evenings are mostly - a combination of Park+ TV  +Dinner 

So to the park we went - I find a lot of really close conversations happen when you just happen to chat with the person you meet at the swing. 

I call this the one-swing-stand

Today I meet an Indian woman. She is :

1. Very sweet
2. She is lonely - I have noticed people are very ashamed to admit that they are lonely but when they do they are very relieved. Its like a guilty secret

3. R was quite rude as he wants to be alone with me and said "bye bye " several times to the sweet child who is quite enamored by him 

 later on we went to the far side of the park where he told me "no kisses" and that he was mad at me. This child HATES me talking to someone else. To make things worse I also played jumble words which he calls scrabble. I am on his hit list today for sure 

Tuesday 

 At night we were reading our books - he picked out his giant book of compiled kiddie books that he calls "Harper Collins" book - DH came by for hugs and kisses and asked R what his fave story was -

 R said "Leo the late bloomer".

DH asked him when he plans to bloom?

But we both exchanged a smile at this child who has taught us to enjoy the scenic route.

Wednesday


One more sunny day - So lovely - R and I go again for our picnic and jumble words in the park. 

R has a strict procedure as it relates to  the park - within which he will allow me to do a little play.

I scramble foam letter words and make him unscramble them. 

Now since he will only take one copy of the alphabet, the words cannot be too long as there are not any letters with two copies ( Eg EIGHT is one of the longest words ) I scrambled OGFL and instead of making GOLF as I thought he would, he made FLOG. Isn't that a weird word for children today to use?

R is working really hard and really long hours.I think he must work 8-9 hours every day. I have to say that progress is slow and language comprehension remains the biggest barrier.

Its not that he is not bright or does not have good memory ( he just rattled off our 16 letter alphanumeric wi- fi code that I have maybe said 3-4 times over the past 1.5 years ) 

He wrote it down here 

Or that he cannot think or problem solve (he can when he is focused).

Its just that his intelligence is not accessible in many ways due to language barrier.

Not that intelligence is all that matters

One of my friends who has a son with Downs told me she was always annoyed by the "angels" stereotype.

I never understood it- but now the "intelligence" stereotype with Autism gives me the creeps. As though our children have to compensate in some manner for their disability.

Why can’t they just be? 

Life is not fair- when it takes something from you - it does not always give you something back in return - why pretend it does? 

All that matters is how much we can make of it.

With all his problems, with that profound emotional immaturity, R is quite extraordinary with his immense capacity for love. 

Today I saw him sitting in my closet surrounded by my clothes, burying his face in a scarf of mine. I feel so moved by this little child's tremendous affection

At the end of the day, if this is my lot - I will be grateful for it.


FRIDAY

I have 4 deadlines at work - all in the morning.

I literally do not know how to do so many things all at once. at the same time if someone had told me a year ago that I would be able to be "On" all the time - I would be amazed.

The pace at Microsoft is like no other place I have worked at. I find new folks weeping at the pace and wondering if they will be able to make-it.

We go to the hospital - his numbers are still not great - his extra med just started last week but I want to just cry - why does all this treatment not help him manage his condition fully - why is he so full of auto-immune dysfunction?

Then there is this relentless fatigue - even when I am sleeping 7.5 hours ( a lot for me ) I am just so tired.

As we drove back from the hospital the clouds were gone and the moon was out on the lake. - a truly beautiful moment.
Though it was 9 pm by the time we are back - R still wanted to "have an evening"

So we drank decaff nespresso with some chocolate while R ate some of his dinner while we are "watching TV " and he is "relaxing on the couch"

R is very particular about his iconic moments and making sure he gets them
( there is a lot to learn from this child )

So I in turn had my iconic moments - some lovely things to balance out some irritations. 

So I :
1.clean the kitchens and put in laundry ( on delay start) while listening to a mystery on my phone
2. warm a lavender wheat bag for my back
3. write my diary while drinking peppermint tea


Saturday 

A relentless day of chores - but still pretty good

1. Laundry - 1 load
2. Cooking - Soup, Kadhi, R dinners, 
3. Dishwasher - load- unload - 2 times 
4. Costco - bought allergy free cleaning products for our cleaning lady and detergent. Also loads of fruit and veggies 
5. Take R to park 
6. Walk 
7. Clean Kitchen 
8. Put things away 
9. Soak rice and lentils to make low allergy pancakes for R ( called Dosa) 

I have the fitbit - I love it - everyday this week other than yesterday ( hospital day ) I have done more than 10,000 steps.

I had no idea just how sedentary I had become

Its very hard to do super strict diet so I am just trying to eat healthy - mostly veggies and walk 10k steps everyday

Sunday 

Is a lovely day as we have finished most of the chores yesterday.

I drink Nespresso and skype with my  parents. We watch Elementary and then we go to Spazzo's - for lunch.

We go to the gym - DH exercises while R and I take pictures of the elevator - today we get stuck in the elevator. 

R is very upset. He mewls and climbs into my lap for comfort. here is a picture of us - me trying to be calm and him in a panic.

I am not upset at all  - I secretly hope that this will reduce his obsession with elevators. 

The Gym folks feel very guilty that we were trapped and give R a $25 gift card that he can use to buy their overpriced cookies.

I take a long walk while DH makes turkey kebabs for dinner tomorrow and coq-au- vin for his lunch.

When I come back - R is asleep on the couch - the rain is softly falling and the house is full of the fragrance of the savory treats that DH has been making.

I sit down to write my diary and I think that life is starting to feel good again. 

I still dream of Tennessee and I imagine myself back in the top- room in  our cabin in the smoky mountains - in the room of happiness- surrounded by the sugar maple trees.

But I am also thinking of pleasure of these majestic Douglas firs, the soft rainfall, the grey-green lakes,  the deep  emerald green all around us.

And I am thinking that there is joy to be had anywhere. 

That you can carry your happiness within you.

For wherever you go.. there you are.

Bringing up Baby

When R was a little, he had a onesie with a sign “If only they would stay little”.

This is something that most mothers say.

Little was I to know how much he would like staying little and, if I am to be honest,  how much we would enjoy this childhood unfolding in slow motion

At 9, he has still retain such sweet innocent charm – that people often mistake him for a much younger child

My sister will ask him to “fulfill all his baby jobs and give her flying kisses”, a nurse will giggle indulgently when she sees that R cannot blow his nose, someone will bump into him at the gym and instead of saying “Excuse me” they will give him a hug instead. 

People coo at him, instead of talk to him. He gets more spontaneous hugs and kisses than any 9 year old I know.

In fact , DH is probably the only one, in all of R's world that pushes him to act his age.

Many articles that adult auties write about things they wish we knew about them says how much they hated being “infantilized”.

But R LOVES being baby - in his self-concept- he sees himself as a small child. And he likes it that way

The other day he told me that he was a toddler.

Most neurotypicals have the peer pressure/natural incentive to start become more independent.

I remember my niece was barely talking and all she wanted to do was do things by herself, when she stopped wanting to be in our laps.

But it’s time to gently nudge him along on this journey.

To nudge myself along as well.

For its not just that I enjoy my sweet child so very much, it’s also that he was so ill for so long.

It’s made me want to be an armor around him – so defenseless and fragile he seems to me.

But that crisis has become part of our normal and we are no longer in that day-to -day mindset of urgency

Its time for this baby, this baby-mama to grow up

This post was written for Hopeful Parents.

A Reboot in 2014

Feeling refreshed 

Being away for 4 weeks was REALLY refreshing.

I  made it a point to not check email or do anything work related ( probably one of the first vacations when I have done this)

Its not that India was necessarily relaxing ( traveling with R rarely is + we spend almost 8 days in transit). But simply occupying your mind a 100% with something else is refreshing.

When I am in my regular  life, i forget that work is a part of my life- not my whole life. On the plane back, I look at R lolling on his seat and I swear that I am going to try and remember this simple cliche that I have lost sight of.

Getting back into the routine

DH and I discussed how much of a routine our regular life is in when we are in Seattle. It takes us a long time to get over jet lag ( almost 10 days) but the routine is a relief.

Plus its nice to have our village again. Without his therapists, we are the only friends for R and it is quite exhausting ( especially in a time where we want to go around, shop and meet all our friends)

Relearning old lessons

I find myself finally able to get into all my old habits and routnes-

1. My flylady routine of cleaning the kitchen in 15 minutes 
2. Listening to mystery stories on my phone while I do household chores ( I am re-listening to the Hamish McBeth series - a series about an unambitious police officer and its so different than the people I am around all day that its a lovely bit of escapism
3. Looking for little pleasures in the day  and connecting with DH and myself. DH and I are back to our date lunches on Saturday and taking walks on the weekend when his therapist is around 
4. Have a day of no-work every week - we try to finish laundry on Friday and cooking on Saturday - so Sunday can be devoted to family time 
5. Getting on a low carb diet and starting to walk( just 2 miles everyday but its a start) 

Still sick 

Had a depressing call with R’s doctors – basically his  labs were quite bad. He has inflammation still

If we are lucky – he may have simply picked up an infection while traveling and if we are not lucky – this means that the Remicade( magical medicine) has stopped working quite effectively.

I dont hold out much hope.I know what the answer will be even without the tests.

Each time in the past that DH and I have looked at  two possibilities its always the more worse one that R has - ( is he deaf or does he have autism, is it motivational or is it apraxia,  is it a bug or is it crohns? So many doctors offices we have sat in and DH and I hear over and over, that its  always the harder road for this most precious innocent child!)

I know his tests will be a pain to do and when the results are back - there will be no easy fix of antibiotics
( Indeed this turns out to be true -and the following days show that he has no parasites and that  his body is starting to develop antibodies to the magic medicine- which happens in 1 out of 10 cases)

This makes me want to cry - why does our sweet child have so much difficulty in life?

I think you all know i work for Microsoft in Advertising

For the Superbowl - Microsoft made an ad about how folks with ALS are using technology to communicate.

On the day that Superbowl airs, the facebook page of Microsoft is simply taken over by the ALS folks asking about the technology that Steve Gleason used in the ad. ( BTW Microsoft has responded to each facebook comment)

I read their stories with my office door shut, tears rolling down my cheeks.

People describing how "ALS is taking something from me every day" , or this request " can you send me this software .. I got diagnosed with ALS recently and when the time comes that I can no longer speak, I want to use this eye tracking software to communicate"

Truly there is no end to the difficulties that life can bring.

But we must "rise to life's challenges" like the Duchess said in Downton abbey today.

One of my uncles is a very religious and erudite person - meditates and prays everyday. I asked him what explanation does religion have for the suffering of our children.

He assures me that there is no explanation - that after all his study he has found that the answer is simple - make the most of whatever  you have

As I try to reconcile with the new challenges in my life, his simple words uttered from a sunny Dehradun terrace come to me often.

That is my resolve for this year - to make the most of life.

That, and to be brave.

10 things about Small Town India

My Western friends often ask me what India is like.

The bits of India that the west gets to see are not quite all the bits ( I suppose you could say this of the States as well- for when I describe the small towns where DH and I have lived - its just impossibly different than the New York, LA etc that the east sees in "Friends")

India is impossible to describe as its a land of contradictions - so let me just give you a flavor.

My parents have retired and live in the small town that my mother was born in.

My mother grew up in a 100 year old house where 2 brothers lived. One brother had 11 children ( one of whom is my mother) and the other brother had 1.

This house had walls so thick ( a feet at least ). 

Each summer vacation for 2 months , we would make a trek to Purulia and my mother would be a girl again – while my father mostly would stay in station ( he is a doctor and was in the Army ) 

I was a studious child who loved school and long summer vacations were a huge burden on me.

Besides my parents’ generation was not obsessed about not letting the kids be bored. I think of all the things we come armed for with R ( his iPADS, books, internet , Wii ) and its so different from when I was a child.

My mother says her parents were even less concerned about the kids not getting bored ( with 11 you can imagine ). 

Their toys were usually discarded household objects  - a particularly memorable one was a discarded tire – that my uncle ( now a retired anaesthologist) would chase with a stick.

As usual, I digress.

This is all to say that I have a long relationship with Purulia

Progress has made its inexorable marks too and there are cars on the roads along with the traditional cycles. 

Every house has a mobile phone.

But there is still the very small town feeling because the people are still small town

1. Bad Spelling and Creative Marketing

Any of you who have seen the “English Whirled Wide” will be familiar with the spelling liberties that the rest of the world takes with the English language. 

Words are spelled phonetically – that too according to the way it sounds in Indian and it leads to some very creative marketing.

 It is the product of a simple and creative mind and many shops assert simply “you like” See "You like tailor shop" below

Actors endorsements are used whether or not they agree :-). You see Hrithik Roshan ( famous Bollywood star endorsing the salon below). Its probably 1000% sure that he has never heard of this parlour 

 

2. The evil eye

 There is great belief in the evil eye – ie someone can cause you ill simply by looking at you with bad thoughts or simply with envy. There are many practices to take off the evil eye ( called Nazar Utaarna ) and man recipes based on the part of the India you are from.

Cause and effect relationships are frequently inferred. 

Suppose you visit someone’s house and they say something nice to you – and you fall ill soon after – it will be  assumed that put the envious eye on you. Even in highly educated families people these beliefs are prevalent

3. The trains

Trains may have become obsolete in much of the West but in India they are still the way in which most of the people travel.

R loves the overnight train travels. He gets on the "Second Floor" and instantly transfixed.

The railway stations are  teeming centers of activity- 

Here is R and my aunt trying to attract this goat

The journey in trains is an adventure in itself - there is always amazing food that people bring in these carts.

None of the vendors wear gloves. The food is delicious and you never get sick from it. 

Lemon tea is an addiction for me and my dad and we drink several cups in our small journeys between Kolkata and Purulia .

Also you make friends -with co-passengers. Its perfectly okay and expected that you will chat and ask each other personal questions

Most of my Western friends have "horror stories" of a person they sat next to in a plan who would not stop talking. I see their point - oh  the people I have found on Indian trains!

Such  missed opportunities  from this approach of protecting your time instead of exploring what is around us.

 For instance this guy I meet

1. Has 4 smartphones - he compartmentalizes his life this way. 

2. Has 10 year old twins who are taking part in the "Dance Dance competition" 

3. His twins don't even look like sisters let alone twins as they are as far apart as chalk and cheese

4 He is hiding the fact that he has lost his iPhone from his wife as he will never hear the end of it.

Gossip

OMG I cannot tell you what a huge part of life this is.

Usually the maids are the source of "what is happening". Sadly my mum's daily is a discreet and reserved lady.

While this makes her a bit boring - my mum does appreciate that gossip from our house does not get carried everywhere 

But my mom will frequently be interrupted in cooking to come outside to chat. - here she is called out by her neighbor

Charity

In addition to the charity organizations, small town people look out for the poor in their own way.

The beggar community of Purulia comes on each day to a neighborhood.

On that day, they stop at each house and people donate things like rice, lentils, vegetables and clothes

My parents are great animal lovers and animals come daily to be fed as well.

R waits eagerly to watch the cows

Temples

Like small town America, small town India too centers around religion. But while Hinduism is benign and accepting- the dieties can be fierce.

The other day I went to the Ma Kali Temple -I wore the red border sari of traditional Bengali women with a red Bindi.

 I love this goddess - she is a warrior deity - created to fight demons - wears a necklace of severed heads of demons. Her other incarnation - Durga - rides a tiger

They both have 8 arms

I looked at her and I felt strength and courage flow into me.

I have felt so buffeted by life this past year - I want strength and resilience more than anything

I pray for a long time for strength - for Crohns to release its grip on this most precious child

Warnings

Well I suppose they do this in the West too - when someone leaves the house - we always says things like "be careful" or "drive safely".

But in the East the warnings are far more dramatic

A typical thing my mom would say is "be careful ... your scarf is flowing .. it will get trapped in the wheels of the rickshaw.. you will fall down and a speeding car will come and crush you".

It is very charming and I look forward to these imaginative vignettes each time I leave the house.

Although I am 39 years old, at my parents house I am still a baby and my parents often say things like "you wont be able to do this"(this can be anything from turning off the switch to going by myself a short distance- "you might get kidnapped.. because there is an alcohol store on the way) .

I also become childish - annoyed when my mom does not make my favorite things to eat and sulk.

Bargaining

This one - I think you guys do know - you bargain bargain bargain for everything.

 Here is my mom bargaining with a rickshaw- puller. This is a serious sport and no matter what items I buy at what price - when I return home and show my great deals -

 my mom and MIL make a point of telling me that I was "robbed blind"

Wintertime Sunbathing

Ahhh this is one of the true pleasures of winters in India - most houses have flat roves ( since there is no snow you do not need sloping roves) .

On these flat terraces - beds and mats will be laid out - so that you can have an afternoon siesta in the sun.

R LOVED these

A story everywhere

In these small towns - everyone knows everyone and there is a story everywhere.

This cobbler used to sit for years under a large Banyan tree which was cut down to make way for a motorbike showroom.

The cobbler undeterred sits there still - no doubt the showroom owners want him to move but he will not.

All the locals silently support him and he makes his living under the hot sun - proud and strong.

Oftentimes, I see his wife come and sit and give him company in the afternoons- true love in those without youth or money.

My dear friends - I have been so lax in blogging - this half written post has been sitting in my draft for ages, and so lax in reading blogs.

I am finishing this post from rainy Seattle - finally finding the time as DH has taken R off to social skills class and I am all alone.

R has had  relapse of Crohns, finally under control now and getting back to work has been hectic as well

Promise to come see u soon

Autism around the world

Dear Readers

A very happy new year to you. I am writing this post from a small town called Purulia in India. We are at my parents' for the holidays

Where I am sitting – I can hear the loud gossip of a gaggle of ladies who are surrounding the tap right outside my parents house (as befits their premier status in the community).The ladies are collecting the government water which comes for an hour each evening and is "soft water"- unlike the hard water that is in the wells of each house .

The steady stream of stray animals that are semi-adopted by my mum and dad who come at their appointed time for food and conversation, has finally abated.

It's all so different from my rainy home in the suburbs of Seattle

In Purulia, I swap my Levis , for Salwar Kameez and a big red bindi and turn native for 4 weeks.
Since ( I think) I am both of the East and the west, I thought I would write some of my observations on autism in the east Vs Autism in the West.

Some similarities and some differences. (Of course these are my personal observations and not scientific statements so take it with a big pinch of salt) 

Awareness is great but you can have acceptance without awareness

R's grandparents don't understand autism per se, but they understand and accept R just the way he is.

He is a favorite owing to his quiet charming ways and his family tries to figure out what pleases this eccentric little person- handing him the calendar with dates when they see his fascination with numbers, giving over the main TV for his Wii and making sure that the Wi FI is working.

I do have the odd aunt who chastises me for not making sure R eats many varieties of foods, but for the most part they marvel at the way he smells everything and gasp with wonder when he plays a classical piece on the little piano on his iPAd. In every way they make him feel beloved and accepted

There are pioneers everywhere

In the city where my MIL lives- Dehradun – we go to see Nav Prerna.

The first autistic group home in India says the founder. We meet the kids who are attending a music class. Its a remarkable place.

Some kids come for daily therapy and some kids stay there.

 Many of the children are severely autistic but Saswati Singh( the founder and herself the mother of an autistic child ) has created a very well structured environment. She believes strongly in GF CF diet, no electronics and mostly organic and natural medicine.

The kids are thriving there.

Pioneer mums and dads too

Like in the West, Eastern parents also make great sacrifices for the kids. At the center, we met some parents whose kids just come for the day. One mother that DH and I chatted with for a long time has a 4 year old child at the center. To come to the center – she is living in a rented apartment and away from her husband.

I asked her whether her parents or in-laws mind this unorthodox arrangement to which she says " i don't bother about anyone when it comes to my kids."

There are many parents here too – just like the west – who are desperate for a cure not progress- ie they will mortgage the house for HBOT but not want to pay for therapy. In fact probably more so than in the west.


In the East, Academics first

Indian parents are obsessed with academics( if any of you have kids that have Indian kids in the class – you will see that this is one Indian stereotype that is very true) - and it's the same with their kids with autism.

As opposed to Seattle, where we meet many children who have higher functioning autism, each child with autism that we meet here is very obviously autistic.

I think parents do not seek a diagnosis for kids with mild autism. Also kids with no academic problems would not be seen as having any issues.

The social set up with the options still of joint families and arranged marriages is such that a child with Asperger's or HFA would have a ready-made structure to compensate for their social challenges.

I think both the East and the West have a lot in common when it comes to disability. They also have a lot to learn from each other.

The West has gifts of the scientific approach to progress for autistic children –while the East has the gift of acceptance.

In our home – we try to combine both