Floortime Lite Mama

Mischief

2012-03-02T07:00:00.000-05:00

R has always been such a good boy

Never naughty ( whiny and mewly- yes! but not naughty )

But this is changing

Mischief is coming in

He plays like a toddler sometimes

The other day he was hiding underneath a blanket squeaking "look who is hiding"

( since the voice is eminently recognizable and since the blanket was shaking like an surface of a stormy ocean -neither the identity nor the location of the protagonist was an enigma - but I still enjoyed )

He likes to do little picnics parties by himself

These days he has been doing all the Coke Sprite Menthos Experiments

We are experimenting with big bottles and little bottles

And with "investing"

He has of course chosen instant gratification and purchased his entire quota of bottles for the month of March in advance.

I have him on my Iphone video committing to not purchasing any more beverages in the March - this is going to be a great exercise in learning about instant gratification and postponing gratification.

He creates a kind of transportation device to take these bottles around the house

The next day we do an experiment - DH drills holes into the caps

When DH's idea of putting a hole in the cap did not work - R quickly does his own, more successful trick - he puts THREE Menthos in to get a much bigger fountain going

He also does a new experiment ( copied from the omniscient you-tube) where he just shakes the bottles and threw them hard which also caused them to burst

R wakes up early this Saturday ( I do not know how he does this every day - we need to shake him awake every week day - but on the weekend he is up early with the birds )

He is started to steal candy and so

when I go to make his bed later - I find all the empty Starburst wrappers

There are patterns on the floor in every room

Every room is a mess

While I am spending so much time cleaning - I do not resent a minute of it

Our son is finally playing !

And so the report card that has come home with an "N" in math ( needs help) is not as worrying

Mischief is a milestone.

And while the mischief he is creating is coming at age 7 and not at 3 - its no less sweet

In fact its even sweeter because I never knew that it would come

I always remember what my friend Jos said about her daughter L( stroke survivor )

"I believe L will do everything .. she will just do it on her own timetable.. its okay .. there is no hurry .. I will wait"

Helping Autistic children learn to speak and communicate

2012-02-23T08:24:00.003-05:00

Many autie baby books stop at the section for" First words"

We left it a blank.

Should we write the few words he had before regression

Or the 6 words he had from the age for 4 to 5

Or should we write about the thousand words he had at 5

( Mostly, I would like to write in the baby book about how much R taught us about language.
All the love he gave us without words, those first 5 years.
But there is not enough space in the baby book for that.
So I write about it here )

The art of conversation is a complex thing which takes much practice , but apart from social language proficiency - R is kind of a chatterbox now :-)

I rewrote an article about our journey to words for the amazing duo Danette Schott and Tiffani on their new website specialism here

I am going to break my rule of always posting content not just a link cause that is what Danette asked me to do and since she is so fabulous I am going to do as I am told !!

Here is the link

Please do pass along to any autie parents you know whose children are pre-verbal.

Bits of January and February: Getting back into Floortime

2012-02-11T19:51:00.003-05:00

January and February have been hectic and I am piecing them together from pictures before they are gone from my memory

Like everyone else we have also had the sickies -

Especially R has not had a good stomach for almost a month .

He keeps getting okay and then keeps getting worse .His appetite is very low Its very depressing .

The skies are almost perpetually grey .

Sometimes watching the mist roll over the mountains is beautiful but I yearn for the yellow of the sun

But enough about the depressing bits.

I read somewhere that one of the most powerful tools in life is focus. ie you can change the way you feel about your life by shifting your focus to the good things

I have always found this to be the most effective thing !

And of course there are lots of nice things that are also happening with R & us

Winter is full of its many pleasures of real wood fireplaces

My 13th wedding anniversary where we tell each that we wont get each other anything but DH gets me these gorgeous flowers ( how lucky am I ?)

I usually have to travel quite a bit for work but this month I have not traveled at all and DH and I have had many chances to have lunch together

Stuck in a Rut

I am stuck in a rut with Floortime

We are really not doing much

We try to make sure that we spend time outside the house ( away from our screens )

So we go for lots of walks

To the library

And for errands

We also employ the other crutch when Floorime does not come easy - we do fun things outside

We go to the indoor water park at an ASA event and R has so much fun

and I try to make everything I can very interactive

But I am depressed

I have these periodic moments where I suddenly realize that there is so much to do for this most precious of all things and we are not doing it

( Though I sound like i am criticizing my parenting, I really am not. I honestly believe we are very good parents..Sometimes we are just not doing enough )

I just found myself looking into a training program to go to ( which is my usual coping mechanism when I feel stuck )

(This time I was looking at the Sonrise program in June - Have you read the book by Barry Kauffman ?- its really great and I have also listened with great admiration to Raun Kauffman's interviews,.
I was really lucky that I picked up Dr Grandin's , Tito's and the Son rise books - when we first had our diagnosis.
Our idiot psychologist- we never went to see him again - recommended a rotten book called "The World of the Autistic child" by Bryna Seagal - outdated book and a fountain of doom and gloom ) .

It sounds like a lovely program and would be like going on a retreat ( I have read quite a bit about this and Floortime and Sonrise have many commonalities that make them appeal to me and DH ) .

Sonrise especially focuses a lot on happiness and acceptance and I feel I need that now .

But its a very significant time investment - also I worry if it may be a little basic program is really for us now.

DH is looking into it as his analytical brain holds us in good stead when we are looking into new things that may help R.

Though the program I know would benefit us,( and indeed we may still go ) I know that this is a stress response -

The problem really is not the lack of knowledge and the training ( we have so much of that )

The problem is the doing

I remind myself of my old mantra "Seek less, do more "

I tell myself that I just first need to get back into the Floortime habit ( for Floortime is a habit )

We need to going out to play every evening.

Otherwise the evening whizzes past in TV and chores .

Dr Greenspan used to say that "half of the game lies in just showing up"

I tell myself that I can at least do that - show up !

R plays a lot of interactive games these days but at first they are very repetitive

Like he will say with great mischief in his eyes ( don't you love his face? )

R: Eat a ..... stick

Me: Gasp ( mock horror ) ... R what is this .. no eating stick !!!

R : giggle and laugh at this

Then R will say : Eat a cloud

I have to respond with the same pattern otherwise he will cry

Or he will write a fact that we all know is wrong like this one where he says" the banana is blue"

And I have to squeal "What ?!!!!" and this will cause MUCH amusement

The banana is blue

You get the picture -

Now there are several patterns -

But they are all patters that once formed will have to be "performed" in the exact same way !

This will look very interactive from the outside - but its the exact demonstration of the quality ( fixedness) that floor time is most supposed to help with

So while there is a lot of back and forth going - it is not Floortime

Dr Greenspan used to say "if you know what is going to happen next .. you are not doing Floortime "

I get some advice from the the Floortime yahoo and other Floortime friends

And try to build on it

For instance we play on the slides with Coke and Sprite ( one of his enduring obsessions )

Even better- - one day we do the Diet Coke and Menthos experiment ( he has been watching this a lot on youtube - the you-tube History is a real window into his world )

Slowly and steadily we are climbing out of our rut

I keep forgetting is that Floortime is also addictive

For me AND for R

In just a few days, R is and seeking me out trying to make me come out to play with him

Eager to go out

The other thing I had forgotten is how much fun I have playing with R and seeing the little connections he starts to make

How many times do I need to learn the same things again?

The two cliches of "The only way out is through" and "Fake it till you make it " are both so true

The sickies are still here( DH Is going to take R to the doctors on Monday ) but my joy is coming back as well

The other day Miss G comes down to show me a Valentine card that R has made

"I told him to write to make a heart with a V and a 3 .. and write - I love you .. but of course he wrote - I love you mama"

I may not always feel like the best mum .. but I always feel like i have the best child

How to cope with the things people say ?

2012-02-05T06:00:00.000-05:00

I am on Hopeful Parents talking about the difficulty of dealing with the things people say in the days post diagnosis here

If you hate clicking links ( like I do :-) ) here is the post

How to Cope with the things people say?

One of the hardest things for mums and dads of autiesis what I call the “coming out”.

Of disclosing to the world that your child has autism

The breezy question of “Howsthe little one”?

To which you have till this day, always replied “doing great”

Do you now just state baldly “ well actually he has autism now !”

When we first found out, I told just my very close friends (those with who had discussed with me the all consuming “does he/doesn’t he” of the months beforegetting an official diagnosis of he-does) .

I told them these close friends by emailand I also told them that I did not want to talk about it at all.

Many people said kind things "Must be hard.. how can I help ?"

But the words of other people ( even when well meaning ) hurt so deeply

"Did you see that Larry king show" ( where the mother wastaking about killing herself?)

"I read this great book - this mother stopped giving her kid cheese andhe became unautistic "( thanks for letting me know )

"I used to think i had it tough .. after seeing what you are goingthrough -- I am going to stop feeling sorry for myself "( Ialways planned to get to the bottom rung of the pity ladder )

Will you be taking him to Vegas to play the slots?

Just curious.. if you could do it again what would you do different …Youmust really regret vaccinating your child( ouch !!)

Do you think itsbecause you were so stressed when you were pregnant?”( what a comfort, knowing that it may have been my fault !!)

“These are chosenchildren of God!” or –“this is just apenitence for past sin” or “god hasonly given this to you because you are strong”( wasn’t feeling so lucky tobe chosen )

And the worst "Soon they will be able to screen forautism in utero and we canprevent autism "

How it hurt!

But the truth is that most people were just looking for something to say.

Often ,in fact, they were trying to read my attitude to see whatwould be right thing to say.

Should they should sympathize or offersomething uplifting?

Sometimes, of course, they were not thinking at all

But, almost never, was anyone looking to hurt

The intent was usually kind

All my life Ihave been deeply in love with words.

So much of my childhood filled with pleading formore reading time while my mom told me I was ruining my eyes and threatened to turn the light switch off !

But being loved so deeply by R - my child silentfor so long - taught me to look beyond words

To the intentionbehind the words.

And it makes all the difference to how I feel about what isactually said

The second thing that has really helped, has been falling back in love with my life and realizing once more that we have the best kid in the universe.

.And being able to truthfully answer" he's great ". A cue to starting conversations that focus on the positive and the possible

The third thing that has made a difference has been to teach myself to be a little less sensitive

The other day an elderly aunt commenting on R’s talking asks”will he always talk like this or will heimprove any more”

My mum, on hearing this, quickly comforts me “oh she is a broken drum ( Bengali proverb) no one knows what shewill sound will come out of her next.. let it roll off your back “

And today its easy to do !

Tales of India : The last chapter, A day in Delhi

2012-01-29T00:43:00.002-05:00

My dearest friends

How lovely it has been to read your comments on my other posts on my India trip!

Thank you so much for reading and for your lovely comments

I close with one of my favorite days in India.

This is one of our last days in Delhi

Delhi is a fascinating city about five thousand years old

( do just the words not give you a shiver?)

It has been the capital of many empires and dynasties ( at lease 11 as per record )

I have spend a lot of my life here

First, as a little child when my dad was a major in the army.

Then at 17 while getting my Undergrad in Economics and living away from home for the first time

And then finally at 23 as a newly minted working woman and at 24 as a newly wed.

I left Delhi at 26 but we go back every couple of years

The previous evening- to the day I describe here - I return to Delhi from Kolkata .

The return to Delhi has been a strenous trip -

I had a 102 temperature in Kolkata and dare not tell my mum and dad as they worry about me.

While R does not do the running away that some parents have to deal with, he does R wander around to whatever interests him .

He also tends to not eat anything - Both of these make traveling with him alone very stressful

We reach Delhi.

When DH picks me from the airport - he tells me there is a party in our apartment

My heart sinks when I hear this - as I have been looking forward to watching TV and going to bed .

Plus our apartment is only used for 2-3 days each month so there is no help - we have to do all our work ourselves

Of course when we get to the apartment - my MIL has already cleaned up and prepared a massive meal

Our guests show up around 9 and I forget my fatigue for a while so lovely it is to catch up with these people that I have not seen in years

By the time the party ends its 1.30 am ( this is normal in Delhi ) and I am wiped out

My MIL shoos me when I say that I want to help with the dishes and I fall into a deep sleep.

When I wake up, I am almost about to wimp out for I am still worn out

But DH insists I come

R whines and tugs at my heart strings but his grans tempt him by making a swing of him.

A few minutes after we leave the apartment, my MIL calls me to tell me that he has forgotten his sorrow ( indeed I can hear his squeals of joy in the background )

Much reassured, we board the Delhi Metro ( I have seriously never seen a more spic and span subway )

Picture from previous trip but I wanted you to see how shiny and dazzling it is

Delhiites don't mind you staring at them.

DH and I take full advantage of this.

We speculate on the lives of the people around us

I also eavesdrop ( in the west, people use unkind words like snooping. But in the east, a natural curiosity in other is seen as very natural. This is NOT a complete boon though as you need to get used to all sorts of personal questions being asked.)

There is a hefty girl next to us who is chatting on her mobile phone about her recent movie experience.

She was so disappointed by the latest Shahrukh khan movie that she simply walked out.

I think she is trying to show her friend how refined her tastes are.

Ahead of us a man is bargaining on his mobile phone for a contract for apparel - he is tense and sweating and I think he is nervous that he wont get it.

There is a couple with their son - the lady looks so grumpy but her face transforms when she looks at her son.

But she and her husband are so loving to their little boy - he is constantly hugged and kissed ( a thing I love about the east is how demonstrative dads can be to their children . My own father would play with us with our dolls and be an honored guest to our tea parties for hours on end )

Apart from meeting my family I think the highlight of my trip is a visit to Chandni Chowk ( translating to moonlit square )

If you have any sense of atmosphere this market will give you the goosebumps

I hunt for pretty scarves and saris

This lane is called Kinari Bazaar- "Lane of Borders"( for the women of India would wear plain saris the border of which were elaborate with silver and gold thread and they sewed these on )

Some of these shops are a hundred years old .

I am ensconced in thrilling thoughts the ancient women who have been in these very streets before me - all looking for something to make themselves look lovely

The streets are so narrow - for when these shops and market was built, the only way to travel was by horse or little carts or your feet

This market, I often tell DH is the most romantic place on earth
( the other romantic places to me are Bhopal - so serene and of course Paris.- to me its just amazing that a place like Paris lives upto its reputation. How cosmopolitan I sound !
The Paris trip was pure good fortune- DH and I were once lucky enough to be stranded in Paris by shenanigans of the airlines and had a lovely time there )

Every time DH holds my hand in Chandni Chowk ( for practical reasons like crossing the roads - for PDA in Old India is considered uncouth) my heart skips a beat

The thing about Delhii even Old Delhi - is that not that time forgot it.

While some of Delhi has abandoned its past - most of it straddles the past and the current effortlessly

Infact, all the shopkeepers sitting in their 100 year old stores with foods made from the same recipes they were made all those years ago - have mobile phones and will often be talking with exporters and such .

My Sari shopkeeper- sitting in a several generation shop - is talking to someone about his daughter who is traveling to London tonight and that the person on the phone ( who has "contacts" at the airlines) should please make sure that the folks at British Airways dont create trouble over her bags ( India runs on contacts !- You always need to have a guy or know someone who knows a guy). In this way he straddles the century effortlessly

While all the old markets of Delhi are fascinating -

you will come across things like a professional ear cleaner ( really !!)

And Shops with their menus written with incredible spellings

or a restaurant that only serves one meal ( comprising about 18 side dishes )

But Chandni Chowk is its own thing

DH eats a little desert which is famous here called Daulat ki chaat - two of the ingredients of this ancient recipe are dewdrops and the full moon

Truly its taste is like poetry.

All the shops are specialty shops

I buy silver and pretty little things and trinkets for my friends back in the South

By the time we return - its lunch time - we grab a quick lunch and then DH and I are off on our separate ways

I go to meet my friend who in now a famous designer and makes the most exquisite clothes you can imagine

I have come armed with all the gadgets and R's specific foods ( for his refusal to eat anything outside has been a huge stress to me )

Her label is much sought after now but she is the same loving and warm friend as always

She talks about the difficulties in making large amounts of clothes for what is essentially handmade stuff ( you can see the contradiction there )

We catch up on everything that has been going on with our lives and eat lots of things

The Gramps pick me up from my friend and we battle traffic to have dinner at the famous Delhi Gymkhana Club

Another 100 year club - they are renowned for their chicken tikka and their kebabs and pomegranate juice and for old money and influential bureaucrats

We feast on a fantastic meal and drive back home

DH has come in a separate car and so we part ways and he will spend the night in his friends' apartment

I am sad to see him go even though I know I will see him the next day .

But I console myself with knowing that he will be able to connect with his friends better without thinking of R's bedtime and such

And the day is done

I write this post sitting in the dining room of our cabin.

Surrounded by nothing but trees and the lights of the cabin on the nearby hill.

Its past midnight but DH is still tinkering away at a house project in the bath upstairs and the occasional sounds of him dropping a nail or something are the only sounds around me

Its so quiet here

But while describing this day to you through this pictures I feel like I am back in that other place of bright colors, loud sounds and crowds and ancient things

Such is the beauty of journaling.

I will add a few more pictures tomorrow .

Good night ! I hope you enjoy reading this post as much as I enjoyed writing it

Part Two : Tales of India: Purulia Days

2012-01-15T10:00:00.001-05:00

Thank you so much for all the lovely comments on my previous post . I was so glad to read them

In Purulia I was too lazy to collect pictures in one day. So I will try and paint a picture of Purulia from the odds and ends of my entire 10 days there

So here is the next instalment - a post on Purulia.

Purulia is a truly small town.

When I say that - I mean really really small town !

Everybody knows everybody

For instance, one day, DH and I are off to visit my aunt.

Lost, I stop at a jeweler shop and I ask simply "Where is my aunt's house?" ( without even giving the name of my aunt or even introducing myself ).

Nonplussed the jeweler gives me accurate directions !

The pace of life is really slow (which is what I like )

Everyday we begin the day with drinking tea in the sun

We lazily watch kite fights (people fly a kite but they are also trying the cut the thread of the other person who is flying a kite and great kite battles take place in the sky. All the people sunbathing on the rooftops are avidly watching this from a distance )

I and my sister are really close and only in this once-in-2-years vacation do we get to hang out ( for she is super busy too being a working mum with 2 kids )

My mum and dad are kind of community leaders there

For instance in their neighborhood , every house has a well which is usually the main water source

Here is our backyard well that the maid is pulling water for washing the outside

There is a neighborhood tap which gets "soft water " from the govt .

This tap has been placed right outside my mum and dad's house - as they are deeply trusted to not take over
( you should gasp at this point as this is respect indeed )

My mum is also always settling disputes

One afternoon,a cacophony seems to have erupted outside .

When I look outside I see that my mum's maids extended family come to get my mother to settle a BIGFIGHT

The dispute is about respect - The daughters of the house have moved back in with their mum and they are being mean to their SIL

I surreptitiously take a photo - shared for your pleasure here .

My mum resolves the dispute by ordering them to stop talking to each other. This is a very novel yet effective way to resolve a dispute

My Dad is the kindest of all and he has as always acquired another mass of pets

The pigeons circle him when he comes out and the dogs ( which he tells me, only like to eat meat ) are always waiting outside with looks of vacuous adoration for him

The skies are blue and its very pleasant ( almost 70 degrees everyday )

But Purulia dwellers are always cold

My parents adore DH - and also son in laws are always given special status !.

My mum makes fish for him everyday. Unlike the west, the main meal of the day is lunch

A note on Purulia would be incomplete without mentioning how direct people are!

One of my cousins is trying to conceive and all the aunts and uncles discuss things like "cycles" and "dates of possible conception" without a thought and in front of the couple in question ( who are also participating in the discussion )

Though if it were me, I think I would die of mortification.

Its like this with everything .

One day we are at a restaurant and someone who has been discussing their problem with being constipated .
In the middle of the meal they announce that they are "feeling the force".
Everyone respectfully makes way so she can go to the bathroom !

And the rest of the meal everyone talks about when they had similar experiences and whether the food in Gopal restaurant has any special qualities that enables the force

Autism awareness in Purulia

Nobody knows anyone with autism( my dad is almost definitely an aspie- a very high functioning one and has a special understanding of R because of it. )

But despite this lack of awareness they treat R with so much love and tenderness

My sister and nephew and niece are doting towards him

It seems he is perpetually hugged

And adored

He loves his rickshaw rides as always ( here he is with my sister )

What is different this time is that R is connecting with everyone

He has this game with my sister where he pretends as though he is going to pick her nose

She gasps in mock horror !

And gives him a mock scolding which makes him pass out laughing and squealing "no picking maashi's( aunt's) nose"

My niece and nephew play a simple game they have called "aaaaah ... wheee".

This simply involves them yelling a battle cry ( aaaaah ) and descending on him with a tight hug( wheeee) .

My mum tells him that he must stop saying "eeee.. eee"

I explain to her that this may damage his self esteem- to which my mum replies that "just explain to him that it makes him look different"

But R thinks its a big joke and specifically does a lot of "eeeeee" in front of her so she will giggle and say "no ee ee" and this provides him with much amusement

R's sweetness wins everyone over

One day my dad and mum tell me in all seriousness that they wish every child was like R :-) ( and they mean it )

Once when I am expressing worry about R's future my mom says nonchalantly "he can eat, go to the bathroom , entertain himself, has good manners . what else do you need?"

Only once do I hear something disparaging about R - we are out at dinner - and one of my old aunts ask if R will always be like this

When I related this incident to my mum., she replies that that aunt is " like a cracked drum .. no one knows what sounds will come out of her next "

Shopping

Do you find shopping lists very revealing ?

I do!

I feel if I only read your shopping list ( with some detail of why you wanted a thing ) I would know all about you.

I found a shopping list in my phone which is written by my sister and I put it here as it will show you our priorities

Sweets are mentioned twice ( which tells you how important they are )

Once for our house and another time when we are visiting our aunt ( champa mamima - which autocorrect has turned to Champagne Mamma ). Its customary to take sweets with you when you go to visit someones house

The Clothes pegs are because we hang clothes in the sun to dry ( there are no dryers in India )

The "lower" is a warm pants to wear under jeans - for my nephew ( kukku) to wear - even though it reaches 70 degrees each day- the minimum temperatures of 47 are perceived to be arctic like. All the kids wear plenty of warm clothes

( when my sister and I go and look at the available assortment we are so amused that some manufacturer without really understanding the cultural connotation has purloined the "playboy" logo -complete with bunny- for underpants for small children . I am guessing he means" boys that play" )

Sooji is a delicious cereal my sister made( kind of like the English porridge - only a million times better)
And I think the last line my sister is trying to remind herself that there are more people to plan and cook for

There is one small market in Purulia which we go to all the time as this the main entertainment ( apart from gossiping )

There are two main shops here .

One is called "Big Mirror"- the other is called "Small mirror"

The first day DH and I go to "Small mirror"- apparently this is a big social gaffe as - our family patronises "Big Mirror"

Shopping in Purulia is a lot of fun.

Even in a small town like this , the women are conscientious enough that there is an entire lane devoted to clothes simply called "Clothes Lane"

While all saris look alike to westerners. each region in India has its own craft of sari.

For example Bengal ( where Purulia is ) has atleast 6 main subtypes of sari crafts

One of the famous subtype is "Taant"- paper thin saris made in hand loom and having bright borders .

My sister has requests from all her colleagues that she must get saris for them . Here are the shelves in the sari shop - tell me have you seen more vibrant colors

Its the same with sweets ( and Bengalis love sweets ) . The distinct thing about the candy here is that they use palm jaggery instead of sugar ( which tastes like heaven)

Cows wander freely in the markets - a point of great joy for R

R has this curious quality of being able to identify when someone is feeling off.

He has always had this and will stick to the people who are not well.

Everyday that my mum is not well ( and she has a heart problem - a source of great stress to all of us ) R is completely by her side all the time snuggling with her and a great comfort

The child's sweetness moves me to tears sometimes .

There is a lot of goodness in him

I think of all the evaluations which show how behind he is in so many things

But with a little distance and perspective - I sometimes also think of the many things he is so much ahead in

Tales of India Part One: A day in Dehradun

2012-01-10T05:43:00.001-05:00

I am back my dear friends

I missed you and am slowly catching up on everyone's blogs

India was amazing and exhausting as it always is

The travel is long and a very fussy eater creates a lot of complication. I will not bore you with details of that

I was wondering how to share India - India is so complex

We were in four places in India. But the majority of our time was in Purulia ( where my mum and dad live ) and in Dehradun ( where DH's mum, sister and uncle live )

So I thought I would do a portrait of a day in each of these place to give you a flavor of my experience.

Its a long post but I always love reading posts from people when they describe their day in detail.

I always wish my international friends ( and my american ones ) would write about the little bits of their day - what they eat, when do they wake up, what their living room looks like etc

So I thought I would write the kind of post I would like to read

Portrait of a Day in Dehradun

I and R wake up at 9 am

When my MIL hears me wake up - she sends her 2 maids up .

As I and R get ready for the day - my MIL has given instructions like a drill sergeant. Her servants have made the bed, swept the floor, folded all the clothes that were strewn around after last night's long drive to get here from Delhi !

Lovely

I finally get ready

I go downstairs to make tea for everyone.

But its very different than the tea-bag tea I have back in the States .

This tea has ginger( fresh from my MIL's garden !!) and cardamom and cloves and is supposed to be great for the immune system

We eat peanut butter and toast for breakfast.

Everybody eats their breakfast while they are on the phones - its amazing how much time people in India spend on their cellphones ( called mobiles ).

People get upset with with you if you dont answer the phone. They call you again and again if you don't pick up .

When they finally get a hold of you - the first question is an aggrieved "where were you ?!!!!!" .

You have to apologetically explain that you were taking a bath or sleeping ( Then your friends will be quite interested in your reason and will ask you - Why that late ? who takes a bath at 10 am? you should wake up earlier?.).

If a phone rings it must be answered ! Slowly you get used to the disconcerting habit of people answering their mobile halfway through a conversation with you !

In the States- at least in the South people will almost apologize for calling you .

They will start a conversation with "I hope I am not calling at a bad time .... "

My SIL leaves for her school . My SIL has a seizure disorder and an intellectual disability . In spite of her health issues - she is high functioning and very sweet

Her school is called ASEEMIT ( limitless ) and it has a staff of three .She waves me good bye with her lunchbox and bag - I think I will burst with pride !

The school has given her such a sense of purpose.I really think, everyone, including special needs folks need a purpose and a social outlet.

I ask Uncle what the purpose of the school is? He answers that "its an escape from the prison of home".

This is very true

This is a school that parents have combined together to create. India has very few resources for special needs folks. Parents and charitable institutions often find creative ways to get help for kiddos

I am so moved by this place.There are many sad stories of the young adults who are here - ( one that particularly moves me is of a computer programmer who was attacked by a gang of hoodlums and lost all his skills and abilities - his parents are trying to get him around computers in the hope that it will revive lost memories in him )

Nothing is perfect and there are plenty of problems for the school ( they had a great teacher in charge who has left for higher studies )

Still, its a lovely positive place and my SIL is proud and happy to be there !!'

Her picture is on their brochure!

DH and my MIL leave for a whole bunch of errands

I am sitting outside in the sun alone on the roof and there is onlyme and R in the house!

How often does this happen ?

One of the best parts about Dehradun is its gorgeous sunny days - the temperature will reach in the late 60's and early 70's and its a mild beautiful sun

Sunbathing is a fine art in India

Even the dogs do it all day

My MIL has 2little dogs who curl around each other like the ying and yang symbol every night, but in the day their litte beds are set out in the sun and they sleep separately

I think of how universal mother hood is

There is a small complex behind my MIL's house where her maids and their families live .

( I can hear you saying la di da. Please don't think we are high and mighty or anything like that - this is a very normal practice in India for well-off families and my MIL is a good employer. In India - electricity and water are precious commodities. For instance, one never takes a bath in India. One uses a bucket of hot water and a mug to pour water over oneself as it would be sacrilegious to waste water in a bath tub. But services are very affordable )

From those apartments, comes the voice of my MIL's maid

"beta kha le ( son eat please )

Her 2 year old son's wails .."nahi "( no )

She cajoles "mera accha beta hai na " ( aren't you mygood son? )

How is it that mothers and children all over the world speak in the sameway?

Who tells us what to say?

But there are also differences

Indian mums are a slap-happy lot

Later I find the same maid giving her toddler two sharpslaps for some infringement

She forgets her anger quickly and oils his hair and chubby little body lovingly inthe sun

One of the dog whines to get in

I let him in and he joins us on the roof

Later on the dog gets scolded as she gets into the kitchen and eats up all the meat that my MIL has bought specially from the butcher for lunch

I tell R about what she has done

R loves when others are in trouble and takes pleasure in pointing out the bad dog and the good dog

R and I spend the morning doing silly things like making faces in the mirror ( him ) and reading books ( me)

We practice writing a couple of essays

I will do a post on Reading Comprehension as this is what we are working on and R needs a lot of help with this

The idea is that he suggests a topic and then gives me some words relating to the topic

Then I turn the words into sentences

So he suggests" India " and gives me some words - I turn them into sentences with help from him

Here is our essay

INDIA

Grandma and aunt live in dwarka ( a neighborhood in Delhi where my MIL has an apartment )

Women in India wear Sari

We came to India at theAirport

Our plane was a United plane

R went to sleep in the plane.

Another time at the airport we took airtran and Delta

last year this time we stayed at the Hilton double tree.

Granma and aunt and Granpa live in India

Golu kuku ( my sister's kids) also live in India.

But golu kuku don't live in dwarka

Golu kuku also live in a house

There are no bathtubs in India

In India I don't go to school

( I wish i had continues with working with R more but the rest of the trip is very hectic and I am very distracted)

In the afternoon, everyone returns and I and our uncle go to pick up my SIL at her special needs school -

I buy some spices- which is part of the project work that the school does !

We eat lunch out in the sun that my MIL prepared with some assistance from her maids early in the morning

DH and I go out for a quick shopping trip

All shops are specialty store what you would call "mom and pop stores " here in the US

R and I look for Coke and Sprite in a sweet shop

Fresh produce is sold in stalls like this

Though the wal-mart-esque stores are coming up - these specialty stores are what are most common

DH stops at his tailor shop ( the one he has been going to from when he was a small boy at the Doon Boarding School based here in Dehradun )

The name of the shop always makes me smile .

Evidently its meant to connote a gentlemanly countenance for its clientele

As soon as the sun sets it becomes terribly cold ( allIndian houses are designed to withstand the terrible summers )

My MIL's houseis all marble (which feels lovely when you walk barefoot in the summer on it but now is like being in a refrigerator)

In the evening DH and I go off to his friend's house toeat dinner

They are planning out their Doon School 25th year reunion ( for this DH will come back in October alone- I am already missing him in anticipation )

His friend hasmade a fireplace outside and we all sit around it

In many ways, its like any barbecue we would have herein the west

However, there are a few differences .

First, there is an unwritten rule in the west that onlyone man - the host-"mans" the grill

On this fire however , all the menand women are busy adjusting logs and wood chips.

They are constantly chidingeach other's efforts as "smoke-raising" while praising their own contribution.

There is a man - servant who runs around serving everything and sothe host and hostess are free to chat !

The food in different ( no salsa- chips ,chip and dip, no hummus.. Instead there are raw veggies served with lime andsalt, peanuts in their shells and Spicy chips - which they call wafers )

We move inside the house for dinner. Thedinner is fully vegetarian and has also been prepared by their cook .

One of my friends moved back to India from the states and was surprised to find how much she liked hosting parties once she started living in India ( no surprise to me though- what's not to like about being a gracious host when other people are doing everything for you ? )

Theconversation too - I bet you would find eclectic -Our host and hostess are very very charming and gracious

The hostess's son had health issues and she describes all the effortsthey took to help him.

Besides going to a regular doctor -she also went to a reiki master, and a homeopathic doctor.

She considered doing a past life regression

( a little note onthis last thing- Hindus believe inreincarnation. That means that each soul is born many times etc till you attain nirvana and become one with God.
In the way that psychologists believe that you cannot move onwithout resolving issues that have happened in your past .

In the same waypeople who do PAST LIFE REGRESSION believe that you need to resolve the issuesin your past life before you can move on )

Its midnite by the time we leave andI am really worried that R will be upset

( I have been hinting with eyes at DHfor the past hour that we should leave.

In the car, I berate him for ignore mysilents pleas- he claims that every time he looked at me I was busy stuffing myface and gave him no hints at all !!)

My fears ( that I will find R weeping in waiting ) are unfounded

R has had a greattime with MIL and SIL who have given him the royal treatment .Everybody has gone to sleep and we have to spend quite a bit of time outside while MIL wakes up and lets us in !

He has beenallowed to do all sorts of forbidden things ( such as eat and drink in bed )and is snuggled up with them fast asleep

I bathe( not in a bathtub but with a bucket of hot water ) and change. Then I go and pick up his warm body up from their bed and marvel asto how a skinny runt like R is soimmeasurablly cuddly

He opens his eyes when I put him on our bed as the sheetsare cool to the touch.

"all done bye bye mama" he says settling on my shoulder.

"That's right sweetangel" he adds ( This is my usual reply to him when I agree with what hesays. If I am a minute late in replying - he supplies myanswer himself )

"That's right sweet angel " I confirm

"You are the best part of our day" I tell him

And the day is done

Happy New Year

2012-01-01T00:00:00.000-05:00

My dear friends

I am out of the country right now . getting ready to celebrate my niece's birthday in a " 100% pure vegetarian restaurant " but wanted to wish you guys a very very happy new year

Wish you a year full of sweetness and joy and calm

Love and kisses

December & Christmas things

2011-12-13T01:00:00.000-05:00

Ahhh we are really getting into the Christmas Spirit

DH has put up the Christmas lights and he has them programmed to a remote which he is carrying

In the dark sky ( as the cabin is far away from civilization ) the lights come on like magic

The man can still delight me after 17 years

Christmas Parties

We go to two Christmas Parties -

R is beyond delighted by Santa - he really really truly believes .

This year, DH Santa has got him this AMAZING gift - dot to dot books where the dots go up to a THOUSAND in numbers ( I think these books are meant for adults )

Our other Christmas gift( a motorcycle ) lies untouched almost

Plus there is a note from us Santa telling R what a good boy he is

R completely believes and Santa is all R can talk about!

He looks at Santa's picture with him again and again and tells me how Santa is hugging R!

Children truly have the eyes of wonder and it is such a gift to be his mum and get the chance to look through R's eyes

In the evening DH and I go to our Christmas party

I dress up ( DH says I embody the spirit of Christmas by looking like a Christmas tree myself - this is not entirely a compliment :-) )

OMG he is so happy to be with his babysitter ( she is his therapist also ) as he loves her - they have dinner at McDonald's ( where his other loved therapist also comes )

How different it was just a few years ago when every time we left him I would make sure my phone was switched on - in case of an emergency

And when we would almost always return to an anxious nervous R

5 minute floortime

As the year is drawing to an end and I am running shorter and shorter of time,I have started to employ this concept

If while doing laundry R interrupts me - I drop whatever I am doing to floortime with him for 5 minutes

This observation came to me when i realized how many books I manage to read just by listening to audio books while doing chores

I started to wonder that maybe I need to apply the same principle to another thing that suffers due to lack of time - which is Floortime

Neurotypicalness

While social referencing is something that is supposed to be missing in auties , I am noticing a version of that coming up for R

He is really interested in everything I do and will often copy me

He will get on the treadmill after I have been on it

Here he is wearing my gloves after I have finished cleaning the kitchen

You can see the wheels in his mind turning trying to figure out why I wear these gloves

The difference is that it does not occur to him to ask me why I wear the gloves - he tries to figure it out himself - through experimenting

The other thing he uses to understand is google - this too has limitations as his reading comprehension is far from perfect

In this way he misses out on an important source of knowledge

Still I love his curiosity and the emergence of the copying behavior

DH often says that I need to remove 3 years off his age and its very true

Finally I find I can read the "Little People" books to him and he really gets the simple concepts that are not based on facts
( as his preference is really only for Books around Facts - coyotes and foxes right now are his favorite books )
R and I go to the library a lot in the evenings and he often runs straight to the section around fact based books for young readers

Suddenly I noticed how this too has changed - for a LONG time he only wanted to read books about numbers and letters ( literally books with names like "my first book about numbers" )

But after focusing on reading comprehension this summer suddenly his world has expanded to other books on facts and he never goes to the introductory books on numbers and letters anymore

Subtly he is developing in other areas too - for instance eye contact is not a problem at all any more

R has perfect eye contact now

Dont get me wrong - he has plenty plenty of challenges - right now a particularly difficult one is the obsession around Wii

But I find its critical to focus on the positive aspects

Papa fix it

There are many things where R's babylike faith and innocence - touch me deeply

One is his faith that his father can fix anything

DH is an engineer and probably also the smartest person I know - so this confidence is pretty justified

The other day R hurt his hand

Now he is a hypochondriac par exellance -
if you comb his hair wrong he bleats "hair hurts"

I try to tell him what a brave boy he is ( while crossing my fingers behind my back as this is a bald lie)

So he hurt his hand the other day - clearly horribly painful though and I found that just his dad telling him that his hand would be okay had the magic effect !!

Trip

We are getting ready for our India trip

while I have been looking forward to meeting my much loved family ...as the time draws near my anxiety over the arduous travel is becoming my predominant

All I am thinking of is R;s food, travel documents etc etc

Then a friend posts an article on Facebook about Business School . In this the author writes

If you treat B-School like an amazing educational experience, chances are you'll get a lot out of it. Just keep your attitude and sense of entitlement in check."
How true this is of life !!

I shift my focus

I shift it the whole purpose of this trip - our wonderful family - and shift attention away from the travel worries

And what a change it is

Because what I focus on is what grows inside me

My dear friends - its been such and instense three weeks- getting ready for the mother-of-all-trips and I have really not visited your blogs like I would like to -( Nor are the next three weeks going to be much better . )

I miss you though and I miss knowing what you and your little ones are upto and am going to catch up as soon as I can

The end of November

2011-12-02T23:30:00.000-05:00

Thanksgiving

We have a 4 day break and a very welcome one it is

We have been walking -to-do lists for a while and it feels just wonderful to do nothing for a little bit !

We asked R what he wants to do on Thanksgiving and he says he wants a picnic

OMG it is blissful - even though it is cold

We ask R what he wants to put in the picnic basket and he wants to put Coke and Sprite

And so we do

We do not however realize that he wants to mix his drinks !!

We do Black Friday Shopping on Friday and its a disaster - both DH and I are very grumpy and at one point we are planning to drive to another store and DH just cannot take it any more and he simply drives off..
And I am so glad he does - I hate shopping

R is his version of grumpy which involves incessant whining

He wants to have a "collection " of Wii Games - and while we are fine with buying him the games -we are NOT okay with buying the same game multiple times

But R wants a collection and we do not give in

I think the ideal conditions for us to be happy are as follows

1. to have plenty of time and not feel rushed
2. to be just the three of us or only close friends
3. to be well fed
4. For R to be happy

I have noticed how much pleasure R's happiness gives to us - perhaps its true of all kids

SOCIAL SKILLS

DH and I are definitely going to gird our loins and learn about teaching social skills and put a plan in place for summer

When our friends are over - R just completely ignores the kids and these are VERY nice kids

Sweet and gentle

One of my friends daughters' tells her mother that she does not like to come to our house because she thinks that R does not like her!

This breaks my heart as I really adore her -

Here is she and her little brother - they entertain each other and play in the hammocks and swings that are plentiful in our cabin

Another weekend we have another set of friends and their kids - who are also beyond AWESOME

Tell me have you seen more beautiful kids ?

Again R ignores the amazing kids

While as always being sweet to the adults - here is R nestled to my friend

DH and I sternly remind ourselves that we need to attack social skills next

Especially reading stories of many autistic adults ( who I learn a lot from ) makes me feel guilty.

These adults talk about how they just wanted to be "left alone" by other children when they were young,.

But they feel their lack of friends and loneliness as they grow up .

This is one thing we cannot ignore

( I must admit that the weight of all the things "we cannot ignore" weighs heavily on me some times )

The kids have demanded a classical Indian meal that DH and I make painstakingly

DH is a bit of a food snob and is ALARMED by the plebeian way in which I am cooking

He grabs the jar from me and tells me to "respect the saffron"

Not only must I use the right ingredients - apparently its also essential to coddle each ingredient

I leave DH to make out with the spices and do the rest of the things suitable to my "pedestrian abilities ( grunt work like vaccuming )

The meal is DELICIOUS and the kids beg for seconds ( and everyone complements me on the sparkling house )

So both DH's bourgeoisie skills and my plebeian ones are well appreciated !!

Reading

I am reading a lot these days

One interesting thing that I noticed was how the experience of a book changes with time.

I re-read Wuthering Heights recently . I used to say it was my favorite book - but I was shocked by how illogical the characters were. I wanted to yell at Heathcliff ( that same person that 17 year old me thought was very romantic )

I think its the same with life .

We can say we will never do this and we will always do that

But we dont know how we will feel about this or that when we are at that point in time .

A woman once wrote about her mother that her mother used to always say that she will never become shapeless like old people do. When this woman was burying her mother - she noted how her mother had managed to stay shapely. I am alwasy struck by the people who manage to stick to something for their whole life . I feel I keep changing

The other thing I realized is just how much I read . I started to write short posts about books I am reading in a separate blog here

I noticed that I read more than 10 books in the month of November.

This really has been made possible by Audio books that I listen to while doing chores

I have the typical poverty of time, but I do have time while doing other things and also I have little bursts of 10 minutes here and there

I have been thinking also that this approach could apply to Floortime as well

SICKIES

DH and I have both had little bouts of sickies.

I am always struck by the kindness of R - he tries to stay close to the one who is not feeling well

Last night when DH was not feeling well, R stayed snuggled up to DH all evening ( his usual place is to stay stuck to me )

His sweetness and goodness make my heart constrict sometime

This month's Nature magazine is devoted to Autism - its super expensive but I was lucky enough to have a friend who lend me her copy.

i will summarize the many good articles in that magazine - so you can read them too

(One of the articles talk about prenatal screening for autism .This breaks my heart - it really does. But let me not dwell on that here )

As I peel a reluctant R from DH's arms to get him ready for bed I tell DH that we really won the kid lottery.

We really did, says DH

The Last days of Fall

2011-11-20T13:00:00.000-05:00

Birthday Party

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

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

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

It was really low key and relaxed

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

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

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

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

I think that counts for something

A trip

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

Have I told you how much R loves hotels ?

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

BUT NEVER SAYS THAT WE WERE ACTUALLY AT THE DISNEY MAGIC KINGDOM ON CHRISTMAS EVE.

Such is the unique perspective of R !

And it makes me smile

Disney Boardwalk

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

Its just the kind of place that R loves

Lots of space to run around

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

Lots of lights

Dinner with R

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

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

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

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

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

Sea world

DH takes R to Sea world

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

I sooo want R to have fun

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

The end of Fall

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

I have been filled with a general melancholy these days .

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

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

Also I just hate the way time is passing by .

Why must it go by so fast ?

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

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

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

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

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

He said " 6 years old is all done "

I felt tears pricking me eyes , but R wasnt sad

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

And that is the way to think

Finding Peace

2011-11-03T11:42:00.002-04:00

The other day I went into my old unused Snap fish account, to see a friend’s photo album

I came upon an old photoalbum – from the time when R was 1 year old – and we were visiting another old friend of mine

She has a beloved dog Abby, who is like her child- we would tease that R and Abby were cousins

Abby is all sweetness and was really patient with R

R, in turn, was entranced by her- that January of 2006

But later that year, as he had a regression and went down the road that would eventually lead to an diagnosis of autism, he began to avoid dogs

Neither parenting nor suffering is a competition

But I believe, that the subgroup of autie mums and dads, whose children had regressions, have a very heavy cross to bear

( For readers who don't know autism - there are some children who are born with autism. Some other children develop typically and around 18 months of age have a regression into autism. And then there are some kids who are in between. This topic also is fraught with controversy. )

People talk about the loss of language in regression.

But it is more than that

How does a child know that they should look at a camera – and then stop knowing that?

How do they stop knowing what their name is?

When do you realize that the best way to talk to your 3 year old is to write to them – not speak to them ?

And how do they stop loving dogs?

This last bothered me most.

For I can deal with many things.

But for R to lose a source of joy.

That really hurt.

I made peace with my new normal

Surprisingly, found even more joy in this new life with autism, then life before

But, this one sorrow remained

Yet with time, this too is healing

Some of this peace has come from reading Jill Bolte Taylor’s words in her powerful book “My stroke of insight."

In this book she speaks of her stroke and her recovery

She writes

“It was vitally important that I have…freedom to let go of my past accomplishments so I could identify new areas of interest..

I needed people to love me – not for the person I had been but for who I might become.

When my old familiar left hemisphere released its inhibitions towards my more artistic side …I needed by family and friends to support my efforts at reinventing myself. At the essence..I was the same spirit they loved….

I looked the same..but my brain’s wiring was different now as were many of my interests, likes and dislikes”

I read (and reread) this.

I make it my new mantra and try to dissolve this last bit of hurt

I put my arms around all of this new life and hug it close to me.

Who R is today and what matters to him, is much more important than who he was

If he is afraid of dogs today – then so be it

( Abby understands, I think )

R's sweet spirit, his gentle heart

The way he is learning everything back

Talking, playing, even posing for the camera

As I do his bedtime routine, he finds a cut on my hand and very concerned kisses it better.

He settles on my lap with request for a tight hug

Oh the joy of this child!

And I think, what's not to be grateful for?

“The bend in the road is the end in the road....if you refuse to take the turn"

This post has been written for the Hopeful Parents website and will be published there on the 5th

The last week of October

2011-10-29T10:42:00.001-04:00

Saturday & Sunday

Are Glorious gorgeous days.

I take a great walk around the whole perimeter of the mountain on which our cabin is.

I can barely move afterwards

I see lovely things like a gaggle of wild turkey that scurries off as soon as I get there

R is perishing to buy Wii Fit plus and we go to Walmart to get it -

R and I are dressed really really badly.

Me in giant pullover that is clean but has a white paint marks right across the chest and R with his pj bottoms still on ( that I pretend look like pants !!!). These are perfectly appropriate clothes for Wal-Mart

BUT

DH unfortunately decides that we must stop at the Fancy mall .

R and I skulk outside Brooks brothers - the cynosure of all eyes

When we finally get to Walmart - they are actually out of the Wii-Fit plus .

I am so delighted that R responds so normally to the Walmart not having the Wii Fit plus.

R is finally able to listen to reason

On Sunday he goes to the Fall Festival with Miss K his therapist .. he dresses up as a doctor and looks adorable

Arent his therapists adorable ?

He has a lot of fun

Here I am delighted to see him actually pose for a picture

This is one" skill" that R had completely lost after his regression

How do neurotypical children know that they should look at the camera ?

Autie kids dont but R is slowly starting to get this back

His report card is all excellent - except for PT -( they give a lot of time to him BTW- so he does not have to turn the test in on time - I am also hoping that he does not get too much help from his aide. His aide is a very nice lady - BTW )

Monday

I go home early as DH is out to the cabin to get the gas tanks filled for our fireplace and grill.

R vegges out after school

I drag him outside to get back into the routine of sensory activities and Floortime in the evenings

Its very very difficult to get his attention and I wonder if my energy is bad. R is extremely sensitive to my energy

Have you read "My stroke of Insight" by Jill Bolte Taylor- it may be my favorite book

While its a book about a nueroanatomist who has a stroke and how she recovers -

I learned a lot about autism from this book

I have always felt that the biology of the kind of regression that R had ( regression with an acquired Apraxia ) is very akin to a stroke

For instance this quote really sums up what I mean by energy

"… I needed my visitors to bring me their positive energy. … I was very difficult for me to cope with people who came in with high anxious energy. I really needed people to take responsibility for the kid of energy they brought me. … Extremely nervous, anxious or angry people were counter-productive to my healing.” Jill Bolte Taylor

I so enjoy the extra two hours at home

Tuesday

Another beautiful sunny day

I am determined to be outside.

I read some really interesting research the other day that talked about how the brain further changes in children with AS in adolescent years .( ie becomes the difference between autie brains and NT brains can have more missed connections as the years go by )

Here I quote from the research.

"Researchers confirmed that the white-matter connections between the brain regions that are important for language and social skills were growing much slower in the boys with autism.
They also discovered a second anomaly: In two areas of the brain — the putamen, which is involved in learning, and the anterior cingulate, which helps regulate both cognitive and emotional processing — unused cells were not properly pruned away.

“Together, this creates unusual brain circuits, with cells that are overly connected to their close neighbors and under-connected to important cells further away, making it difficult for the brain to process information in a normal way,” Hua said."

( interestingly in the article the author- not the researcher - writes that "that understanding may put some parents' minds at ease. The maps clearly show the difference is chemical or biological, and no one's at fault.")

Of course it does not put my mind at ease at all.

A huge wave of guilt washes over me -

This is the same downside of neuroplasticity that our Floortime Consultant talked about and has just reminded me of the importance of constant intervention.

All of our brains are constantly forming and reforming

Autie kids are doing a whole bunch of repetitive things in order to cope with their environment due to SPD and anxiety - no wonder some of their circuitry is not being properly formed

We go to McDonalds, R's school is having a fundraiser and so we go to show our support and we have a great time with Ronald actually comes to talk with R without knowing he has autism

Its WONDERFUL to see R engage with him so naturally and nicely

Wednesday

Is Diwali( Indian Christmas) and DH's birthday

We go to the temple for - I have forgotten how beautifully and traditionally Indians dress up for Diwali

In leather boots and a suede jacket - I feel self conscious till I remember R's third birthday .

Coincidentally Diwali fell on R's birthday that year - ( the date of Diwali changes every year unlike Christmas )

That day - 4 years ago - was really busy as my mother was having palpitations and so we went to the Doctors . On top of that , I wasted a lot of time getting a cake from a bakery and dressing up in a sari

As a result, I really was not able to spend any time with R and celebrate him or burst firecrackers .

I still remember how hurt DH had been by my spending the day just running around .

Today almost 4 years later , I am really glad that my priorities are right and I think less about my clothes and more about experiencing the day with my special ones

Though DH tries to get R to hold the sparklers, R mostly sits on the glider closing his ears firmly

We go to Famous Dave's - DH's favorite barbecue place for dinner

( Famous Dave is usally our Father's day tradition -However , the other barbecue place we go to has very bad associations for me as when DH and were celebrating his birthday there last year - our closest friend called us and told us he was getting divorced ) and have amazing pecan pie and ice cream there

Thursday

Is an incredibly wet and rainy day

And we just watch TV and do laundry .. when its time for bathtime and bed time - R is horrified that I have not played with him at all and the day is ending

So we play imaginary instruments for a while in the bathtub

I am always touched to see how he retains everything we teach him

Though it also makes me feel guilty as I remember how much more I should do

Friday

The work day ends and we pack up as soon as we can to head to the cabin

As we enter the forest , DH grumbles about the people who he claims have a conspiracy to come in front of him in order to slow down and foil his ability to drive at a "decent pace"

But slowly the golds and reds and rusts of the forest work their magic and I just simply look around wanting to fly around in this beauty

In "the architecture of happiness", a book I am reading right now , the author says that when we come home we look at the things around us and remember who we are

But, in the forest and in the cabin - I remember not so much who I am, but who I want to be and how I want to feel

If you have read on this far, thank you for reading this long long post .

I love re-reading these posts- where I write a little bit at the end of each day - a true journal .

For I know, I will love reading them at another point as they will let me relive these precious days

On your posts too - while I love the thought provoking ones - I especially adore the ones in which you share the ordinary bits of your day

I hope you all have a lovely weekend my friends

Adios till next week

True Story Tuesday; encounters with minor celebrities

2011-10-25T23:14:00.001-04:00

One of the things that I love about R is that he has his own rules about what he likes and does not

He rarely follows the herd

I often wish I was more like him as I am too prone to worry what others think

But sometimes I also wish he was more like me

Its almost impossible to convince R that something is cool - if he does not think it is

So you can stand in line for ages and get to meet a character that another child would swoon to meet and it means nothing to R and he cannot wait to get away

Or you can pay an embarrassingly large for a swim with a dolphin and your child simply does not care and strains away from the dolphin

Slowly we have started to give up trying to create these situtaions for him

Not in a sad or despairing way

Not at all like that

We are simply becoming sensible to the fact that these things are meaningless to R and since the whole point is to bring him joy, its really better to buy him foam numbers than get him to meet Mickey

But it seems that R gets to meet his fair share of celebrities whether we try or not

Whether it is our visit to Disney and the Little Einsteins set up a photo booth right next to where we are taking a break. And leo tells R that he wears glasses just like him

Or at the Animal kingdom where the forest nymph drapes around a tree where R is resting nonchalantly - while tourists around us click hundreds of pictures

Or today when we went for R's school fundraiser.

And we almost leave because its so very crowded .. but just when we are leaving DH spies an empty table

And Ronald comes and talks to R and they actually have an exchange

This true story happened this Tuesday and has been written for my wonderful friend Rachel's True story Tuesday here

Fall in the Mountains

2011-10-21T14:40:00.001-04:00

October gave a party;

The leaves by hundreds came -

The Chestnuts, Oaks, and Maples,

And leaves of every name.

The Sunshine spread a carpet,

And everything was grand,

Miss Weather led the dancing,

Professor Wind the band

-George cooper

My dear readers - you often hear me wax eloquent of all things Fall .

And this fall is no different

In the mountains, it makes you want to kiss the ground

This

is slowly turning into this .

We are blanketed in red and gold

DH and I love to take walks and we force R to come along .

R tries his best to outline his ambitious plans of doing Wii FIt and eating Doritos, but we insist he come with us
He starts off flouncing along in a sulk

But soon he is having such a great time that he is racing along going eeeeeeee

I am so happy to be out with two of my favorite people.

We try hard to pose for pictures

Do you find it easy to get your kids to pose for a picture?

This child would much rather kiss his mother

Or hug me tight

Than look at the camera

When he does look at the camera we get these mealy mouthed expressions

I give up after several tries and pose just by myself

And then later when I download the pictures I think - R is the wiser

For surely, its better to show your love to the object of your affection than to put your love on show for someone else

Goodbye to Miss E

One of our beloved therapists is leaving - E worked with R from October 2007 to October 2010 - seeing him 4 times every week

She had a baby last november and was no longer able to see R

Finally after a year she is moving to another town

She comes to say goodbye and R is really really weird with her - ignoring her and looking quite indifferent

I am mortified because E has done SO much for us

Her daughter is really adorable and tries to get R's attention several times ( but to no avail )

But after she leaves, he cries his eyes out

Finally , he cries himself to sleep

Later on the couch I see he has snuggled up to the 3 letters S-A-D and my heart breaks for him

I always think of the way people think that auties may not feel much,

R's problem is that he feels too much.

IEP meeting

We have a nice IEP meeting.

There are not too many services available in our school district but there are good and nice people

They are for the most part nice and sweet and they care about the kids.

His sped teacher is very very knowledgeable about Autism and his mainstream teacher is a kind and sweet and intelligent woman
One of the teachers - his OT actually started to cry at one point in time - saying how much R touched her!

Currently he is being integrated in mainstream for half the day and in resource room for the other half

They also at the end of the meeting thanked us !!

One of them said that they are so used to being criticized all the time - that they were very grateful to actually have someone be appreciative of them

It really makes a HUGE difference to us that R is accepted in school and I said several prayers of gratitude when I see that for the most part in elementary school all the special needs kiddos are treated with gentleness

Outside time

We spend a lot of time outside.

The weeks at work are extremely draining and my insomnia is back. ( my mum is not very well and that contributes to my worry ) but I revive each weekend

This summer has been a scorcher and so the cooler days are very welcome

DH has been very busy with his projects and makes many martyrlike statements to me ( about how hard some people are working in sharp contradiction to some other people )

Though he also accuses me of doing the same ( being an insufferable martyr when I work while he is lazing )

As he is walking down I rap on the window to blow a kiss at him -and he trips and falls

I come out sympathetically, looking particularly unbecoming in my fleece robe and say

" Were you blinded by my beauty"

DH smiles and tells me "you dont know your own powers"

Of such silliness is happiness made.

TST : Sleeping with Snakes

2011-10-18T16:36:00.003-04:00

I think many of you know that I work in the field of consumer psychology

But I did not start out this way -

About 15 years ago I wanted to work in the field of environment and social work

This is where I first went to Grad School - The Indian Institute of Forest Management

The program was really eclectic and I spend two of the happiest years of my life there -

This was also the place where I met my DH and that may be a large part of the magic

It was housed on the top of a mountain where just a few students about 18 in my class lived

I think a large part of the experience was the location and building.

The building was a very very unusual.

Full of arches and stoops like this one - this arch is a water reservoir as well as the entrance

The architect won an award for the building -
He was inspired by a town called Mandu that existed in the 1500's in India .. you can see the resemblance in here -- see the remains of Mandu below. ( I love the name of the town Mandu - especially its older name Shadiabad - city of happiness ) Image from Wikipedia

Living in these buildings had significant impact on 20 year old me

The eclectic and unusual program involved us spending weeks in Himalayas studying medicinal herbs

One night DH and I trekked and drove all through a lot of dark mountains and ended up here. I can tell you it was something to wake up to the Majestic Himalayas.

All we did was stare at the mountains all day and as I write this post - 17 years later .. it takes me back to that other time

Another part of the program that took us to the Taj Mahal- which is every bit as romantic as it sounds - what can you say about the love of a king for his wife that he build a mausoleum for her that took 20,000 workers and 20 years to make.
That when he was imprisoned .. his only wish was that his prison be in a place where he could always look at the grave of his wife ( the dark legend of the story is that he had the tongues removed of those architects and right arms amputated so that they would not be able to replicate it ever .. Plus he was in prison because his son overthrew him and imprisoned him.... but let us not dwell on these unfortunate aspects of the story . )

We traveled to strange and remote places using not the most sophisticated transport and learned about ancient village practices from villagers

We spend time at arms-length from elephants

On many occasion we saw pythons lying on the roads, unable to move, having swallowed a small animal

There were leopards on campus.

Once DH and I saw a leopard leaping across the road in the night .

I told DH naively at that time, that this was the biggest cat I had ever seen - and was soundly teased the next day - when it was reported that a leopard was on the loose

One of my professors used to tell this story of man eating tigers that ended with this line

"The man eating tiger was caught by the villagers and shot.. poor fellow ."

The bad guys in this story were of course the villagers ..

the man eating tiger was seen an completely fine and only doing what it was meant to do as the villagers had encroached upon the forest and ergo it was their fault that they were eaten

All this unusual living and learning , led to a great broadening of mind and spirit

One of the debates that raged in the community was the case of poisonous snakes

One side felt that since we lived in the forest - we were really living in their home and should absolutely do our best to not come in their way and invite harm.

This side's point was that a snake life was just as valuable as a human life

The other side felt that we had a right to live and our right to life was more impt than the snake's

A heated debate raged for months

Finally the conclusion was that we had to check fangs before we did any harm to a snake

One day one of our seniors came back from a late night ~~drinking session~~ studying session

As soon as he came to his room , he fell upon his bed and fell asleep

When he woke the next morning he found that he had been

LYING IN THE BED WITH A SNAKE ALL NIGHT

The snake was crushed with his weight and so he came to no real harm

(But once he saw the danger he had been in - he had a fever for a week )

This story is true and has been written for my darling friend Rachel and Mr Daddy's blog contest True Story Tuesday where people submit their outrageous but true stories here
I normally dont participate as I am not funny enough but I want to show support for my beloved Rachel who has been through a great loss of her adored MIL recently . Please do visit her - she has an awesome funny touching blog and she has a special place in all our hearts

He said WHAT????

2011-10-13T21:50:00.000-04:00

I returned to my office last week to see message from R’sclass-teacher, asking me to call her back

I called back – heart thumping – thinking that she wouldtell me that inclusion was not working out , or R was not learning anything orthat he was sick or something like that

I really like Mrs Mso I was hoping that it wasn’t one of the above

“Well the reason Icalled” , she says ,” is that he saida bad word in class”

“What word ?” Iasked, confused

“The REALLY bad one…the one that starts with F…” she replied

I felt a nervous giggle coming up ( don’t you just hatethose?)

She added quickly “ Wellobviously I know that it could not be you guys .. I cant ever imagine you usinga word like this.. you are so much better than this

This thought, while a lovely one, is patently untrue of course.

We are, in fact , not better than this at all.

We are much worse.

While driving, DH regularlycasts aspersions on the fellow drivers’ relations with the female members oftheir family.

I, when deeply moved , have in fact been known to use an expletive as an adjective or adverb..as in “ I am so …bleep .. happy “.. this coffee is bleep awesome”

“Never”, I saypiously , crossing my fingers behind my back , “we don’t even know these words”

I add the age old parent excuse “ he must have seen it on TV.. while switching channels, in fact .. we don’t really watch programs that woulduse terrible words”

Suddenly, a thought occurs to me

“Its his apraxia .. hehas a terrible time pronouncing certain syllables .. he was probably saying ..truck or duck “

She replies “ No, nothere is no confusion, he used it veryappropriately” .. the computer was slow .. so he said – @#$% this and when we gave him an assignment hesaid “ #$%^ this “

We talked about appropriate consequences and I called DHlater that day

The thing is though , neither of us was upset

You see , R onlylearned to speak last year

“Well it is a new word“ I say

DH added “ and he usedit appropriately”

Plus its the pinnacle of language - spontaneous declarative language

Of course, we are going to make sure that R does not use a word like that again

But words came so late in our home, we can never really takethem for granted

We finally, have to watch what we say in front of R

And this- having towatch ourselves- feels like a gift.

Luckily R has defended his mum and dad’s honor!

When asked where he learned this word from, he said “From Pepsi”

For our part , since DH and I are trilingual ( while R isjust about lingual in English ) – we have decided to swear only in Bengali orHindi

The wonderful Danette asks us to share a funny moment forthis month’s Best of Best Bloggers which will be published on the 15^th– here

Autism Blogs Directory Interview

2011-10-12T07:54:00.000-04:00

I am super fortunate today !

Two of my favorite bloggers - Kathleen and Kim are showcasing a post and interview by me today on their joint blog the Autism Blogs Directory .

Go here to read the interview

Thank you so much Kathleen and Kim

Have a magnificent Wednesday

The Language of Love

2011-10-04T23:30:00.000-04:00

I am on the wonderful Hopeful Parents talking about the importance of the words we choose to use here

If you hate to click on links here is the post

The Language of Love

( image from photobucket by cryingbabybrowneyes)

“What's in a name? that which we call a rose
By any other namewould smell as sweet”

Shakespeare

Idisagree with the bard on this.

Forthere is a lot in a name

Becausewords mean things

Arose called by some other name – would, in fact, not be the same.

For instance, ifwe started using the word “tomato”, instead of the word “rose”

(just try it out for size –“My husband gave me a dozen tomatoes forour anniversary” – and you will know what I mean.

EvenIf you add the disclaimer – when I say “tomato”, I really mean “rose”)

Soonthe way we experience the rose, will be imbued with tomato-feelings

Forthis reason, I have simply loved the wayin which the special needs community has united against using the R –word

(A brief explanation for readers who are not in the special needs community. Theword “retarded”( which is thankfully slowly going out of business - when used as an expletive, is deeply hurtful to our community, as it uses a diagnostic term for a disability, as an insult. Plus the word is also usedto deride kiddos with special needs. Same with phrases like “rides the short bus”. Very hurtful whenyour precious baby, in fact, rides that bus )

Itreally is wonderful that the special needs community has come together to askfor respect in the language that is spoken to us.

ButI think there are two other places that we need to be very careful withlanguage.

Thefirst is the words we use to ourselvesto talk of our children .

Eventhe language of our inner dialogue

Forinstance, I never use the word “normal” to describe kids who don’t have specialneeds.

Instead, I use the term “Neurotypical”( as in “Neurotypical kids are so charming”).

Whenasked what this means – I will usually reply that neurotypical means“non-autistic kids” or “typically developing” kids.

Iwill carefully skirt around using the word “normal”

Forif I used the word "normal" – I would by default -be describing my child as abnormal.

Andhe is not.

Heis just …..not-neurotypical.

But the final and most important issue with words are the ones we choose to describe our children in their presence.

I think about the word – “disabled “–

Isay it in my head- dis- abled

While there is really nothing wrong with the word, iIimagine what it would be like, to have that as part of a vulnerable little child’sself concept from the very beginning.

Not good

ThenI think about the word differently–abled

Wellthat feels completely different

Itsnot about being PC.

Its about something infinitely deeper

Itsabout self concept and identity

Ithink some of the best gifts we can giveour children are about how we make them feel about themselves

Thatwe look on them with adoration and we speak of them in a language of love

Sometimes it is necessary
to reteach a thing its loveliness,
to put a hand on the brow
of the flower
and retell it in words and in touch
it is lovely
until it flowers again from within, of self-blessing.
-Galway Kinnell

Notes from a plane on what we did in September

2011-09-27T20:44:00.000-04:00

September has been a month of ceaseless toil and business trips( three business trips in one month and many 12-14 hour workdays in those business trips ) .

I am trying to gather up the memories of this month before I forget

Thankfully I took pictures which makes it so much easier ( what did one do before the camera phone ?)

Refocus on Floortime

In some part of this month, I noticed a dullness in the way R was.

A repetitiveness in all his passtimes and I was worried about this.

Its not just about screen- time.

DH and I don't worry too much about screen time because between school and therapy - his overall free time is very limited.

And because he works so hard - we really don't want to plan out every hour of his day

(Like all of us- doesn't an autie - deserve to have a balance of work and what he considers play? )

Plus, I also think its okay for me and DH to sometimes just be lazy and watch some TV and drink cups of tea.

That being said, I do worry about the quality of computer time.

So its okay when he is looking for EFL videos and learning vocabulary or watching videos

But it does not feel okay at all, if he rewinds and fast forwards the same video over and over again

I was discussing this with Miss Gypsi .

Her idea was that we need to remind him of all the other stuff that there is to do!

At this, a light bulb went on in my head

( how many times must I learn the same thing over and over again? )

I dedicate an entire weekend to playing and high affect activities and R is literally a different child

Real, high quality attention is like sunshine to R

I try to make every activity and chore fun

We do bubble baths instead of regular baths .

When he rejects my ideas of turning the bubbles into snow - I do exactly what he wants to do ( which is make the bubbles fly in the sky )

I try to get him to notice aspects in everyday chores that I know will interest him. I want him to notice

Like, pumpkin patches outside grocery stores

I get him to think about everything - when I make Pizza- I get him to make to help him spread the tomato sauce and cheese.

The trick, I think is to prevent the constant narrowing of the world that happens in times of stress ( as school and hard work are always great stressors )

Of course, the best thing to build in your child is the desire to open up their mind and explore their world and this can only happen if it looks like fun.

So the rules are

Find new things

Make the new things fun

Pretend Play

I bring out all the Thomas the Trains and we read rhymes about them

( I am struck by how rudimentary his play is and how its stopped at what was taught to him.We formally stopped pretend play a few months ago to focus on the very important "Reading Comprehension" - but then I also remember what a great gift it is that .1. he retains the learning and 2. he is teachable )

We try and find other things that will interest him .

DH gets him a pin wheel which we have a lot of fun with .

I think R thinks that the pin wheel is a flower ( as the pinwheel we have in our house is stuck in the ground ) and he smells it carefully

I love the way his mind works

The focus back on Floortime and on R again has a remarkable effect on all of us I think.

DH and I are never happier than when we see R blossoming

I am always touched by how little it takes to make R happy.

The other day he asks for (yet) another set of foam numbers.

DH and I remind ourselves that its important to him - even though its a very childish toy

OMG he is so happy with these numbers.

My eyes fill with tears as he does his happy jig in Walmart after we check out with the numbers in the bag

I resolve to throw out the "appropriateness of a toy for his age" measure that I sometimes( thankfully not always ) have

When I see him dancing, I am simply ashamed that I ever thought dismissively of these 5 dollar foam numbers

Fall

The first leaves of fall have come .. it maybe my favorite things in the world.

I spend as much time as we can outside - especially when we are at the cabin.

DH working on his various projects -

The torrential rain makes a great gaping hole in our front area and DH builds a retaining wall.

Having an engineer as your husband is really super helpful !

DH works,

While R and I play and lounge about on Saturday- which I have firmly told DH is the day of no "shoulds"

Birthday
I had a birthday in September .

I love the 30's.

I make the mistake of letting R choose where we should go. Since his criteria is based on which restaurant gets him the best color combination of crayons ( red and green for Coke and Sprite ) he chooses Applebees

DH gets me these lovely lovely flowers.

I have bought my official present earlier ( a handbag ).This is our procedure now - we get a gift that we want. But we also do something extra like card and flowers for me and card and candy for DH .

This sounds unromantic but it really takes the pressure off thinking what to get for each other and really cards and flowers from DH are what I really want from him!

Thank you to all of you who wished me on Face book

Business Trips

I feel like I always complain about traveling - but its really not all bad.

The long days while traveling - like yesterday, a day that started at 5 am and ended at 10.30 is quite brutal -

But its mostly my planning which results in this as I like to pack as much work into each day in order to minimize my days out of town

At the same time - I suddenly do find the time to blog.

In fact dear friends, thanks to the WiFi and the enforced free-time I am able to get back to my much loved blogging from a plane.

Plus I really do enjoy working while still missing my DH and R painfully at odd moments.

While making a cup of tea, I will suddenly remember how my DH wraps the string of his tea bag round and round the handle of the cup.
Sometimes I will use our unique family language and realize that no one else gets the meaning.

Like I will use R-speak and say " its gone.. Oh no" when I cannot find something and realize that none of my colleagues know our secret language and are wondering why I speak with such melodrama

I end this post my dear friends.

Please forgive me for its length and the editing errors as the ipad is really not an ideal tool for blogging.

I have missed you - promise to visit all your blogs soon !

What I learned from some First Graders about Acceptance

2011-09-04T09:44:00.000-04:00

Small kids are usually accepting of differences.

This is what most of my friends tell me

But they also need to be explained the reason for these differences

A friend of mine with with a neurotypical daughter gave me this valuable insight. She said that she had showed her daughter that she should reach out to one of her classmates who has autism. Until then her daughter( a very kind and sweer child ) had never considered the possibility, that a child that did not reach out - could have wanted friends - and just did not know how to.

DH and I thought it would be good to talk R’s classmates about R – his differences and the reasons for these differences – in order to help R be more accepted in his class . ( without any mention of any diagnoses of course )

So one hot Friday afternoon – armed with popsicles – we set out to talk to his class

We sat in a shady spot - the kids in a circle – and us with them too ( me, quashing any qualms about what the grass was doing to my silk dress from work )

We handed out the popsicles and were clearly too slow as a couple of the kids bleated from the back -“Why did I and L not get any popsicles?”

After they were assured that they were not being singled out and neglected we asked them if they knew who we were

Kids “R’s Parents” “R’s Mom and Dad”

Us : How do you know ?

Kids : “Because his dad drops him in the morning ?

Us : “Do you all know R ?”

Kids : Yes Yes Yes!

Us : “What do you know about him”

Kids answer

“He is a cool kid"

“He is very quiet”

“He is a nice boy”

I felt little tears pricking at the back of my eyes

Us : Have you noticed anything different about him

Silence

One boy from the back “ He has a lot of things written down on his desk .. he reads those things and then he does those things”

Us : Do you know why he does that ?

17 heads were shaken to indicate no

US: “Do you know something special about R .. he could read when he was 3 years old ? But he only started to speak a year ago. So reading has always been easier to him.”

Kids nod heads

One boy : I could read when I was only 9 years old (all the kids are 6-7 years old by the way – but we decided to not nitpick J )

One kid : Sometimes he moves his hands like this .. why does he do that ?

Us : We use Mom –nos’s example “ when you sit for a very long time .. do your feet feel all funny “

Kids : yes yes yes ( one dissenting voice says – “mine never do” – but we ignore it as its clearly an attempt at attention )

Us : What do you do when you feel that away

Kids : “All tingly” .. “we shake our leg” “we walk”

Us : Well , some children’s body can feel that way all the time and so they need shake their body from time to time so they can feel okay

Kids : oh

His teacher says : “Do you remember when we read the book about how everybody is different … how some children learn differently … and we need to accept them ?”

One angelic-looking ghoul chimes up : “Is that they one where everybody’s head got chopped up in the end ?” she adds with satisfaction .. “into little pieces “

Teacher turns to us hastily and assures us that no books on massacres are being read in First grade

She turns to the class; “No the book where we learned that children learn differently .. “

Kids : Yes

Teacher : “And how can we be friends with R ? We can talk to him about the things he is interested in ..”

She points to the book we write on R and have handed out two copies to the kids ( basically the book comprises – a picture and a sentence per page and talks about all the cool things about R. And also adds that he is only now learning how to talk and make friends )

Teacher continues: “Like words and numbers and that is what we are learning in First grade.. and we need to be patient”

She turns to us “ I need to go inside to get the waste paper basket for the popsicles ..can you wait here “

Once she leaves the kids assure us “You know how good R is .. he has never got a pink slip”

Another kids “Well its actually a red slip “

Dissent breaks out as to exactly what color it is – but the general consensus is that it’s a VERY BAD THING to get

The kids explain all the laws of the slips – and there is clearly a lot of confusion

But it occurs to me that each child is really most concerned about their own life and not getting into trouble themselves.

And does not really spend all day wondering why R is different.

Its an obvious truth but something I did not realize

( its like realizing after you spend all your high-school years wondering what-everyone-thought-of-you. Only to realise that everyone was too busy wondering what-everyone-thought-of-them)

Kids say pointedly : “We have given R some compliments today”

And I remember they are doing this in their school – this chain of giving compliments

US : “Well we want to give you a compliment too .. you guys are amazing”

We tell his teacher and his resource room teacher that we were so worried that R would get picked on .

And instead these kids are so accepting and just plain nice !

And they assure us that it never happens here – even in the more grown up classes

The resource teacher says “Sometimes as they grow up, in fact they get too protective and wont let the teacher correct the child”

I assure her fervently that if THAT is the problem we have to worry about , we will be very grateful to them and the kids and the parents of the kids who are raising them !

Of course things are far from perfect for R socially

For R, friendship with peers ( for he has many good relationships with grown ups ) is one of his biggest challenges.

He has no friends his age and has neither the know-why, nor the know-how of friendship

( And I am always reminded of this uncomfortably when I read R’s favorite bed time story these days – “Lizzy’s Friends”- story of a child with no friends - alone everywhere.

Lizzy makes friends with the paper toys she makes through Origami and imagines they are alive.

Even though, I tell R, that the giant pile of books by his nightstand are his friends like Lizzy’s paper toys are hers – it gives me a great pang. My friends ,you guys, online and inlife – mean so much to me - you see )

While I am very aware of all of these challenges

To know that when he goes to school, he goes in an atmosphere of casual acceptance , means just so much .

Thank you first graders, thank you teachers and thank you parents who are raising these great kids.

This post is written for hopeful parents and will be published there on the 5^th.

The Last week of August

2011-08-27T12:12:00.000-04:00

First Grade

Has started .

I simply cannot believe that he is a first grader?

He is in the mainstream class right now.

In the past I have always resisted mainstreaming, because I don't know if a large classroom is where learning really happens for auties.

BUT - his teacher seems really nice and I am keeping my fingers tightly crossed

And R likes mainstream class - so that is where he is going

We are to have an IEP again in September and we are praying that they do not remove his shared aide.

The Weekend

We swim a lot and sit out a lot

I try some Floortime but there are no long flows of interaction.

The little people ride the bus

Then another person rides the boat

Then R moves to the watering can

Then he makes me touch the tomato leaves so he can smell my fingers

Disconnected islands of ideas

( later when I think about why this could be, I realise that I have made the fundamental mistake of Floortime - which is to not start with "Observation". Instead I have done lazy floortime - just used toys and props. This is why R moves from one thing to another - more on this in another post . What I should have done is observed his interest.. what he was doing and started from there )

We swim a LOT

The water is ICY cold - the swimming pool water is supplied by an underground spring in our cabin complex and I certainly think that this spring originates in the icy Tundra

The high point of the weekend is finding this turtle.

DH is very keen on having the turtle as a pet .

I am also converted to his POV when I see the underside which is so clean and smooth . Most civilized of the turtle

I somehow suspected that the turtle would be like the stones one uncovers in the garden sometime- smooth and clean on the surface and whose underbelly is full of creepy crawly things.

DH carries the turtle to our cabin ( its his hairy arm in the picture and not mine.. I assure you mine is quite smooth and hairless - even though I don't come by the hairlessness entirely naturally )

I am hoping that the turtle will like our yard and we will encounter him multiple times

Monday

We go to the school's PTO meeting

Its interesting to be there. I imagine that the people sitting there are sitting ensconced in the carefree-ness of having neuro-typical children.

I am keeping my fingers crossed that the school year goes well

As we walk towards the school cafeteria, I introduce myself to one of the moms who is looking unsure.

She confides that she is actually not the mom but the grandmom who has had to take custody of her grandson - owing to her daughter in law's issues.

And also that she is worried that her grandson has ADHD and she does not know how he will pay any attention in class

I don't know what made her show her vulnerable side ( for Westerners almost never do - they usually put up a brave front, Easterners usually talk about their problems - secretly they think this ward off the evil eye - such is the subtext of culture )

But I am grateful to her for it - for I had been in my Autie-mum self-pity thinking that everyone else's child has it so easy

I tell her that my son has Autism and she tells me that she has heard that they are very brainy

What a sweet woman!

When we come back home, Miss Gypsi R's therapist leaves.

She recently took R to McDonalds and then wrote a book on it. Pictures and descriptions of what they did there

The trip has been a grand success and R shouts out her name when we pass Mc Donalds

I plead with R to come out and play with me

He says a firm no to all my entreaties

So I wear my running shoes to get on the treadmill and immediately R pleads for me to go outside

He hates it when I form a separate world with the treadmill and my headphones.

We jump on the treadmill all evening and R unfortunately learns about static( or stack-it as he calls it )

He keeps trying to hold my hand and gets an electric charge -

He is full of self-pity as he has also been stung by a bumble bee - thanks to his current favorite song taught to him by his beloved Miss Sadie ( I am bringing home a baby bumble bee...wont my mama be so proud of me )

Unfortunately the song ends in the child being stung by the bee and the song's prediction, has turned into a reality for him twice

Miss Sadie apologizes profusely but I tell her its a practical lesson that is priceless !

( even though the sight of his swollen finger and his piteous bleats of "all done bumblebee hurts" and "finger hurts" and "its sticky " are a stab at my heart )

Besides she just loves him and can do no wrong as far as we are concerned.

Like me, she calls R her Prozac

Tuesday

Welcome Books is a series that R is addicted to thanks to Miss Gypsi

When I tell him that we are going to the library he is so excited that he literally cannot sit down !!!!

This is a geek boy for sure

At the library - I make him apologize to the librarian for the book he lost as he puts it "Gone to Hilton Garden Inn". ( I have had to replace this book and I want R to be more careful )

When it comes time to check out - I see he has chosen about 40 books that he must have.

I quickly give him a reality check

And tell him he can have 5 books - which he quickly bargains up to 6 .. how thrilling this is to me I cannot tell you . He now baragins all the time .

When I persuade him for bathtime telling him that it will just take two minutes .. he shrewdly asks for one minute.

Wednesday

no sooner than I come home R insists we go out and play in the trampoline where unfortunately we have a learning opportunity to understand what static means once again !!

R keeps pleading with me "no static" and tries to hold my hand and gets the jolt of electricity.

Finally I leave him in it alone for a bit

In the mail my sister has send a Rakhi for R . Rakhi is a festival in India - where sisters tie a thread on their brother's wrist and remind them that they must protect their sisters . This tradition started in Rajasthan - when the Rajputs would go to war and the sisters would remind them of their familial responsibility so they would not be too reckless.

I read the note my BIL has written and I am a little teary as my BIL's note says that R can always look for advice and protection and anything he needs from his elder sister in India.
( in this way he has reversed the tradition ) .

I think my family understands autism more now.

They have always completely accepted and adored R . But I think they also always thought that he would sort of outgrow autism - if not in exactly that way - for they don't really think of autism and R - but just him ( which really in many ways is the approach DH and I have )

My sister would tell me not to worry "just becasue he makes humming sounds"

Somehow while I have always tried to explain to them all the challenges he also has -

I find I also secretly like they dont take his challenges seriously .

Their implicit belief that an intelligent loving child like R will always find his way ( which BTW I do believe ) is something that I like

Thursday

I come home for lunch

DH and I are on the 17 day diet .

We find we have each become enormously corpulent over the summer( this is in no small part due to all our food rituals - Icecream after dinner , cupcakes, baileys etc ) and have to each lose 12 pounds immediately or we shall immediately explode

One of our friends has advised us on this diet and as she is a person who gives amazing great advice always ( on varied subjects such as - the little plates can go on the top rack of a dishwasher, you should keep a little plastic bag on the kitchen counter while cooking so you dont have to keep going back and forth to the big dustbin etc ) we both have gone on it

Its a LOT of fun to diet with my DH - in fact one of the things that makes it great to be married to him is that he is a guy that is fun to do things with.

So these days if I have time to come home for lunch I do , and DH makes these amazing omelettes with sundried tomatoes and serrano peppers and turkey meat

This is a great diet, guys and we have pulled ourselves back from the edge of disaster

And we are finding that we enjoy eating lunch and chatting at home quite a bit. This is now our new date lunch

My friend in India tells me that she found a book by Arun Shourie - a famous journalist in India. The cover caught my friends' eye as the woman looks a lot like me

The book is his and his wife's story - raising a child with Cerebral Palsy.

He examines the platitudes that people give parents of kiddos with special needs kids example "he ( child with special needs) is suffering now because of all the bad things he did in his past life " .
( this one always incenses me )

His book is a no doubt academic appraisal of the explanation of suffering in various religions, but the excerpts of his feelings about his son has me in tears. There is such a special bond between parents of children with special needs.

Miss Gypsi is doing R's homework with him - he has to fill out a chart of "all about me"

Its a really clever bit of homework - I thank God that R can express ( some) thoughts now .

I love knowing little things about him like his favorite color now is blue.

There are people who believe children are people to be moulded .. but I often think of raising R like a process of discovering him.

In the "other things about me " section he has written a bit about me.

His thoughts are simple like his little heart

"I love mama ..sometimes she goes to the airport"

There are so many things I wish I was better at as a mother

But in R's eyes there is only this one thing that he faults me for.- ( even though he deals with my business trips with fortitude and has a great time with DH )

That sometimes I go away

Tell me,was there ever a more darling child ?

The Last days of Summer

2011-08-17T23:13:00.005-04:00

My dear readers I am reconstructing the past 4 weeks with pictures, before they are gone from my mind

How is it August already ?

Just two more weeks till school starts

I always dread the start of school – as R does not seem to really enjoy school much anymore :-(

DH pointed out to me that 1) most kids don’t enjoy school 2) as long as R is not being bullied its fine 3) he needs to do things that he does not enjoy

While all this is true, I still want him to be happy and enjoy his day

This child has worked so hard since he was only 26 months…a mere baby

Often these days, the days of being a baby are getting past and I want to hold on to some carefree bits for him

The other day, when we returned from the cabin, he really wanted to go to buy Coke and Sprite ( which is his current obsession ) – we went to Weigel’s and bought the big bottles

( just so you know, he does not want to drink these beverages, just look at them and play with them )

I watched R stim off them and thought of turning it into a Floortime game

And then I stopped myself

Let it be, K I told myself

I took joy in his simple pleasure in these bottles

I remember once telling my MIL, whether she would consider a ketogenic diet for my SIL who has epilepsy

“No I wont”, said my MIL firmly , “Nidhi loves enjoys carbs and I am not going to ask her to cut those out”

At that time I wondered why my MIL would not do everything she could to help her child .

But now I do

OUTSIDE TIME

R is very very big on being outside these days.

Unfortunately it is horribly horribly hot

One day I am so grumpy as work has been terrible and when I get home , the air-conditioning has flooded the garage ( and leaked into the basement )

This is already my last nerve as a couple of weeks ago the washing machine flooded the basement

I am so overwrought and as soon as sit down - R is dragging my hand to go out - AND its 97 degrees

I want to yell - can I have 30 minutes please

But then I suddenly think that my autistic child is asking me to come play with him

And I re frame the situation - as its an invitation - an absolute privilege

I go out side

R collects all the objects of his desire and takes them into the trampoline - DH has purchased the number book series and he is crazy about them

We really have a great time and I forget about how hot it is

( i remember when I was a small child - how I never used to feel hot, ever - though Delhi - where we lived was hot as the Hades and there was no air conditioning. And my school had a tin roof )

Another thing I am noticing is an improvement in Executive Functioning. Many Auties have a problem with Planning and coordination - but with R when he is interested We are noticing some improvement in this.

LANGUAGE and READING COMPREHENSION

We read lots of books- he tries to simplify the books with themes

He will look at the pictures of the polar bear for instance and will say "Polar Bears" Then he will add "no seals".

This is fine and clever as he is able to say 2, 3 things about everything in this way - by describing what it is and then what its not

I know he has a lot to say and lot of desire to say it - but he does not know HOW

No matter ! . This too will come

This has been the summer of reading comprehension and while its a long journey we are definitely making headway

What is equally impt I think is that he LOVES books - I am so glad for books have always been my haven

One night when I ask him to pick what books he would like to read, he chooses this great pile of 27 books !!!

I often wonder how much he understands for he often categorizes books based on his own agenda - rather than on the story

So for instance , he will point to a picture of a furry lynx and say - "snow" and then at the Great Bengal Tiger and says "no snow "

But when I am reading the story of the "The Invisible Moose" he cries as though his heart will break when the beautiful moose is stolen .

And when she is found again, he jumps up and down on his bed happily!

I think of the scene in Strange Son when the dad finally realises how much his son comprehends while seeming uncomprehending and asks him

"Dov what were you doing all these years "

Dov types back "Listening"

It gives me the goose-bumps when I read this and I often think of R with apraxia and how important it is to presume intellect

Trip to Atlanta

I have a work trip and DH and R come along as the Great Coke museum is there as this beverage is R's current obsession

We stay in a hotel in Centennial Park - can you see the CNN building in the background

( probably the high point of R's Trip )

R snuggles with a rubber snake and DH and I skeeve all my friends out by uploading a picture of him kissing the - most realistic snake that it is !!

Though R has been obsessed with Coke for a while - when he goes to the Coke museum he is done in 10 minutes .

( he talks about it for days later though )

I hear him talking to his therapist the other day -Papa takes me to Statue Of Liberty and Coke Museum
while Mama take him to "Starbucks"-

Way to make me sound weak !!!

Friends

We spend a lot of time with friends in July and August

We have a bunch of friends that spend the weekend with us at the cabin

I simply love the way R is completely accepted by all my close friends .

R is so comfortable with these wonderful little girls . These are the first few children he actually seeks out

They take their various screens go into the bedroom and close the door behind them

So giddy are the three of them ( though R really is not interacting per se ) that when I and my friend go to make up a air-bed for the girls - the kids keep jumping on the bed

As soon as we get one child off , another leaps on the bed

My friend and I start to laugh and laugh

So we give up and come back later when they all have calmed down somewhat !

In Atlanta we visit another old friend's. home- she was my roomate in grad school and we have stayed close ever since to her and her dogs

Their house is gorgeous and has a swimming pool and a river close by

And R - water child as he is has a lovely time in this gorgeous place

The beginning of school

Is always incredibly stressful for both me and R.

But that time is here now and we must make the most of it

My friends always compliment me on how much I live in the moment and appreciate life

I seem to be a great optimist

But sometimes I wonder if I am a pessimist in disguise

For the person who really treasures their present , is also the person who is aware of how fragile it is

Each day as I leave for work, I watch R and DH sleeping, turned to each other - like a big C and a little c. I listen to their breathing, thankful to God - that my precious ones are with me

Each time I hear my family's voice on the phone or read their words over an email - I think - thank you god they are still with me .( for my parents growing older,the little time I get with my sister breaks my heart )

Though I am so enjoying R's childhood,

Always behind this great joy, is the feeling that its slipping away

That soon I will no longer be able to be the source of joy that I am now

That one day, he will see himself through eyes not as adoring as mine

I think, in counting the weekly hours of therapy and measuring progress, there is a very real danger of missing these precious childhood years

Dear reader if you have stayed with me this long - thank you

I started this blog as a sort of stern voice and record for my floortime sessions

It has long transcended that purpose

It has become way to connect with myself and be the keeper of my memories

But its also become a way to connect with other mothers and fathers like you

When I write these posts, I think of the little boy of Tagore's poem "Paper Boats.

In this poem, a little boy, floats paper boats, after writing his name on them -hoping someone will find them

Paper Boats by Tagore

Day by day I float my paper boats one by one down the running stream.

In big black letters I write my name on them and the name of the village where I live.

I hope that someone in some strange land will find them and know who I am.

When night comes, I bury my face in my arms and dream that my paper boats float on and on under the midnight stars.

The fairies of sleep are sailing in them, and the lading is their baskets full of dream

What I wish I had known about therapy in the beginning of my Autism Journey?

2011-08-13T10:58:00.006-04:00

Autism and therapy is a huge topic

In the initial months post diagnosis, its incredibly empowering to know you can actually do so much to help your child

On the other hand, its incredibly confusing to know exactly what to do.

Now in my 5^th year of the autism journey, there are so many things I wish I had known right in the beginning

For a brief but excellent analysis of methods go here on Autism Tomorrows. Its an excellent smart blog and her thinking is so much like my DH.

For a perspective on principles to consider in your therapeutic choices, read on

The following are some insights from me, my DH , the people that work with R, and my autism parent friends .

Thank you to all of you for your perspectives

Intervention is critical

There is no denying that intervention is very important. R has made so much progress since 3 and we firmly credit the great therapists and interventions we had

Other mums agree

“VB especially has been life changing, as I firmly credit it with getting A to talk”, says Lillian

“I feel like Ts therapy has been transformative and life changing for him and for our family. When T was first diagnosed, he was completely unable to communicate any needs or wants, he had almost no receptive language, he was not interested in other people and he walked around in a kind of solitary fog most of the time. Step by step, my husband and I have watched how T's teachers have found creative and fun ways to engage him and spark his curiosity and interest. They not only helped him learn how to learn and communicate...but they sparked a desire in him (buried deep) to engage, to explore, to enjoy the things and people around him” says Kim

“I have often thought that getting that early intervention was absolutely crucial to the successes he has had. We've had some brilliant OTs …there is no question that he has needed ST and he has benefited from it. Lately, I've seen big improvements in H's coordination when riding a bike and swimming thanks to PT. .” says Ellen

While getting the right help is very important there are many things to watch for

Understand your child’s autism

This is the very first rule.

I am coming to feel that there is no autism.

Instead, there are many autisms .

While, the tendency in the medical community has been to keep simplifying – ( now even Aspergers has been put under the spectrum) , the reality is that “Autism is only a description of surface symptoms” ( Jill Escher )

As parents I think one of the most important things is to thoroughly understand is the way in which they need help.

Specifically, forget labels, and understand the barriers to learning and socializing for them

I remember one of our ABA instructors ( who we loved ) was very worried when R had hardly any words even after 1 year of ABA

She drove to my house one day saying she had an idea.

Her idea was that as R loved his mother more than any reward – I was to stand outside the door.

He had to say “Mama” or he would not have me enter the room

He tried and tried but the words would not come out and after a frustrating amount of time – we gave up

The real problem was not that he did not want to say my name – but that he could not

He had SEVERE Apraxia . His mouth did not move correctly.

So the first and foundational rule is to understand what your child really needs

“if I know what I am specifically trying to target...then we see progress” says Heather

Custom Home program

Once you figure out what your child really needs it time to figure out what exactly to get them

The very true cliche of “if you have met one child with autism , you have met one child with autism” needs to be taken a step further.

And the therapeutic program needs to be developed that exactly meets his needs

In the beginning, somehow, one gets into the trap of thinking that more is better

We can obsess about getting them the 40 hour per week” golden number without thinking specifically about what we want to help them with .

Getting them a lot of help is good, but its only one aspect, getting them the right help is very important

“Talk to most autism parents now and they'll tell you, for example, "We have an ABA program, some OT appointments, some speech appointments, a social skills group, and a few other things." It's usually quite disjointed, a bit directionless, extremely expensive, and very time consuming.

If a parent can say, however, "I run a custom home program," that parent (after a certain amount of learning, to be sure) can cherry pick the tools (for example, concepts from the Son-Rise Program, Floortime, RDI, OT, PRT, whatever) most relevant and helpful for the child, focus on the most important goals, and intensify the hours to the extent desired… “

Jill Escher

Think in terms of helping your child progress, not curing autism

“I wish I had learned to focus on Autism as a life long neurological condition …..I focused on two key skills as the end-all-be-all for success and when he blessedly acquired those .. I was taken aback .. woah he still has autism .. major grieving ensued….It s a ultra marathon .. though please celebrate like hell when you reach each milestone” says Heather

. “VB was critical for us ...but with that being said, I still have an 8YO with autism....but I would like to think that the therapy helped push him along faster” says H

Its also my personal view that thinking in terms of curing autism , can leave one vulnerable to quacks .( as in my experience , mostly the quacks promise cures. The good guys always talk about progress)

( not to mention the severe psychological impact it can have on the child and the family )

Take the advice of experts but remember that you are the expert in your child

This is a really important concept and one that took me a while to understand

“I wish I would have known that the professionals are not really experts on my child, they are merely part of the team and I am the case manager--the expert on my child. I wish I had the confidence to trust myself, my instincts. I could have been much more assertive and been much happier rather than wasting time questioning them in my mind. “
I wish I would have known that there wasn't a one size fits all approach that I had to follow. I spent a great deal of time figuring out the right mix of what my child needed and that is always changing.”

- Meg

“They are really no experts in your child’s specific autism .. every expert is an expert in their particular field .. you need to be the one to synthesize it all together in the way it works for your child ”

- Says Atul

Also , don’t look for good answers on prognosis.

The real truth is that no one knows .

This generation of auties , I speculate , is going to be more different than any other generation of auties from the past.

“ I wish I had known that with Autism “functioning levels” and “prognoses” are bullshit concepts” says Karen

Modify your program as your child’s needs change

The mix of what your child needs will change in time

Don’t think that if a particular method was very helpful at 3, that it will also be helpful at 6

Choose the right therapists

Having expert therapists is important.

As is having therapists with a loving positive attitude.

This has been one of the main criteria with which we seek therapists for R

We have been particularly blessed in this respect.

R’s therapists are not just good, they also love him. And they see his strengths.

“Your program, your therapists should be flexible enough that therapists change their approach even based on the mood of the child”. says Atul

For instance, the start of the school year is very stressful for R, so we are telling his therapists to really be sweet and kind to him.

Our purpose is not to explain his “lack of performance” but to make sure that he does not experience any additional stress in a time that is already stressful to him

After you have been in therapy for a while …be open to all options …. including getting off the therapy train

An important thing to consider is that some children may outgrow specific therapies.

And that therapy may be replaced by good teaching

“I think the EI and Floortime stuff when A was little helped me more than her, giving me something to put my hope in at the very least, and teaching me how to interact with her at best.
However, what I have seen over the years, especially as she's getting older, is that nobody seems to have any real "answers"....OR they're just plugging along doing the same old things hoping for new results…I really do feel that 90% of A progress is because of DH and me and her natural maturity and progress at home.
I also don't assume that our experience is like all of yours.....for me personally, I don't think the whole therapy world is smoke mirrors, but I think some of it is definitely a waste of time. We've had a lot of freedom and a seen a LOT of progress since we got off the "therapy train" and I'm really looking forward to getting off the government school train as well!” says Amy

Think critically

Don’t get into a panic mode. Its so easy in Autismland to get distracted by false science.

A few may be trying to make a quick buck

“Run from anyone that promises a cure” says Lillian

But there are many well-meaning and talented professionals who are trying to help you.. its just that their techniques do not work for your child’s autism

“The people who proselytize each therapy like AIT etc may not be trying to cheat you at all .. they just may have examples that work for certain autisms and not all of the. Try things out .. if they don’t work don’t continue” says Atul

“Many EI providers don’t know much about ASD.. I think a lot of them have experience with Downs .. which is just not the same thing…Because of EI I blew off language…in my mind I thought of it as a delay .. thank god for my ABA team .. he had to be taught language .. just like he had to be taught pretend play “ says Christine

When a therapy does not help your child, don’t automatically assume that the problem is that you that did it wrong .

It simply could mean that that is not the right therapy for this autism even if it worked for that one

Though its easy to do that

As my friend says

“The lingering doubt of course remains- were those therapies really not all that helpful, or wasn't I able to tailor them to my child's specific needs. It's stuck in my mind that if they can't learn the way we teach, then we have to teach the way they learn. So if he doesn't learn, until proven otherwise , it's me not teaching the right way. Which- of course, is very conducive to inner peace and smelling roses.. says L “

Also don’t compare your child’s progress to other children’s progress

“All children, autistic or not,progress at their own pace” says Mysh

Open your mind to your child

“For a long time with Ry, I was standing on the outside demanding he come to me. That he meet my standards, that he reach certain markers, before he would receive my praise and approval. It didn't work and he was miserable, I could tell he was leaving me psychologically. I had to tie that rope around my waist and meet him where he was, not demand he meet me where I wanted him to be. Together, I would shepherd him toward where he needed to be to succeed in life. But he couldn't do it alone; just like Carol-Anne in the Poltergeist movie needed her Mom to come to the other dimension and get her, I needed to meet Ry in his other-place, circle my arms around him, and try to bring him back”… says Debbie

Do not be distracted by anything other than helping your child

Helping should be our only focus.

Distractions can come in many shapes and forms . For instance, guilt may be one of my biggest distractions

“I wish I'd learnt earlier just to focus on what is needed in terms of help, rather than trying to find out what "caused" the autism”. Says Mysh

Do not think that if your child is Higher Functioning or has Asperger that they do not need help

“I wish I knew that my "high-functioning" child likely needed just as much intervention as many children who are affected more severely. Just ones that were appropriate to him. should have pursued some very necessary behavioral and social interventions much earlier than I did.
I read a brief on asperger's from the Yale Child Studies center earlier this year that stated something like. "although asperger's is considered to be a "mild" form of autism, it is in no way a mild neurological disorder." I wish I had come to terms with that fact earlier in our journey” says Mamakat

Timing of each therapy is very important

This is another aspect of the custom home program.

Many things are more useful when the child is ready for them

In our case, the first year of floortime, was very heavy on sensory diet and really not trying to climb the developmental ladder

Later on, R was far more receptive to other teaching

“. .......rewind back to Nick's younger years and the amount of stress I had wishing he could have more friends. What I didn't realize was that HE had to want it. Once he did, it became easier......now organizing for his 21st birthday and he has had to cull his birthday party invites to 80 of his closest friends”. Says Mysh

Don’t feel like you need to try out everything

This is another huge pressure on autie mums and dads ; the feeling that each tool untried, is that elusive something that might have “worked”

I get that weird feeling in the pit of my stomach again when I heard other moms talking about ABA, the local autism summer camp, and a bunch of other things that we have not done, not been to, not tried, etc. It's the feeling of "should I have been doing that? Look what we've missed out on" etc. But intellectually I know that this isn't the way to feel, and that we've been doing what was appropriate and needed in our case, which isn't necessarily the same as other kids on the spectrum would need. {sigh} We're way past early intervention stage, but I still wish I could get a handle on this feeling....Says Jennifer .

Don’t forget life

“I think therapy makes a big difference. But it has to be weighed with the pressure it puts on your whole family... Cost, time, work” says Molly

Your child is still a child, don’t forget to enjoy them

“I wish I'd had more support in just enjoying my child” says Karen,

Almost all of the encouragement and support was geared toward worrying about him and trying to change him. Very few people encouraged me to enjoy him, but I did find a few of them and they saved me from a lot of fear that would have otherwise overtaken my life.”

Don’t think that 5 years is the deadline

“There's always time -- there isn't truly a "before 5" clock and kiddos can always make progress at 5, 8, 14, 20 . .” .says Heather

Think long term and Have a vision of your child

For me and DH our vision for R has been Happiness, Self Reliance and Goodness.

And so far he is doing very well on 2 of those things and making progress on the third

“There is so much necessary therapy early on and all you can think about is my child is a baby, just barely 2 and you want him do what for how long? No one sits you down and says this is the plan and i know it sounds crazy but if we do this for 3 or 4 years and reevaluate the plan based on his development from time to time then we might be able to help him, but if we do nothing, then so will he “ says Danielle

Make sure your focus is foundational and not cosmetic.

“Make sure your therapy goals Focus on long term objective.. and not on things like reducing stims.. just because your child looks odd “ says Atul

Building on Strength not just deficit fixing

I think this is a very important concept that does not get used much. Everything that the child loves and is good at should be used.

Use words like “gifts” instead of using ( or letting anyone ) use words like “splinter skills” to describe an ability that your child has

The reason I am not crazy about therapies and do not see that they account for the majority of Alex's growth is that a lot of therapies are deficit oriented (based on deficits, of course) and highlight what is missing in a child. Since we got away from deficit orientation and the intention to fix, we've focused solely on appreciating what is going well. I think that for us, in our home, focusing on the many ways in which Alex is capable and sensitive and wondrous snowballs every minute into bringing about more capabilities, etc. That is where I see his progress springing from” says Karen

Down Time

While its tempting to schedule every minute and feel that that is the right thing to do , more is not always better

“Autie kids deserve downtime .. just like any other kid…. R is going to have 7 hours of school and 1-2 hours of therapy everyday .. that is a 40- 45 hour work week .. the rest of the time he can do what he wants .. he deserves it.. and he does not need to feel he is doing something wrong ” says Atul “not only is unstructured time helpful for him also provides a venue for him to grow independent thinking. After all the goal is self reliance ”

Psychological impact of your therapeutic choices

The atmosphere we create for our child is in our therapeutic choices is crucial

“If all day they are being corrected and told what they are doing is wrong .. what kind of impact will it have on their self esteem ?” asks Atul

Just think of how little and vulnerable our kiddos are when they start therapy .

While its important to acquire skills , its very important to remember, that skill acquisition needs to happen through play and with love and gentleness

I think its very very important to surround your child in an atmosphere of unconditional love and approval.

That- though we are putting all this effort into helping them blossom for tomorrow - we truly completely and unconditionally love who they are today

This post has been written for the fabulous Danette's SOS Research Best of Best Bloggers.

For the past series click here . .

This month's topic is Therapy & Special Needs. To read what other bloggers have to say go here

What we did in the beginning of July

2011-07-21T15:57:00.017-04:00

The 3 day weekend

Lovely July starts with a 3 day weekend which I am very excited about ‘

Some of our couple friends come over and its very nice

They comment on how much R talks now .

Indeed I need to constantly remind myself that his talking is such a great gift.

Just 2 years ago we wondered if he would ever talk

Intuitively he knows that I am going to leave for a 3 day business trip on Tuesday and is stuck to me constantly ( though I now theorize, that he is actually paying attention to when DH and I talk and so he knows I am leaving before I make a schedule)

In the evening I decide to take a walk and usually R wants to stay behind but this time he insists on coming with me

I love his company and tell him so.

I love love love talking with him

Many of my questions go unanswered, he only answers the ones that are interesting to him

In the trail around the cabin, someone has parked two cycles

R points to them and says excitedly “ride a bicycle”

I reply “ They are not ours “

R bargains “First walk, then bicycle”

I reply "No bicycle, they are not ours , why do you want to cycle ?"

R replies “ Exercise”

We stop several times to look at the setting sun from different angles

R says “yellow circle”, “red circle “( very true)

He looks at a cabin ( which is much smaller than ours but has the whimsical name “kiss the moon” and so we all like it a lot – this is in sharp contradiction to other cabins that have been titled. "kiss me goodnight” – too coy even for me . Allison’s dream – cool but only if you are Alison , Sand-al’s – where is the sand ?)

He says “ I want to live in Kiss the moon”

He smells leaves

And when I ask him why , he replies “ Leaves smell pretty”

The child is so interesting .

One of my friends said that the greatest gift a parent can give to a child is to be interested in them, who they are

This is true ,

But sometimes I think this may also be the greatest gift you give yourself.

As being truly interested in your child ( in fact in all your loved ones ) is a sure way to enjoy them.

Business Trip

I leave on my work trip and as is R’s usual behavior – he does not sleep the night before

DH and I have gone to bed late as we have to take care of a lot of things since I wont be home the next three evenings –

so we are none to happy when R is awake 12pm -3am and then in a few hours its time to wake up and drop me to the airport

I hand R the schedule

Now that the time for me to leave is actually on us, R is fine.

He is like me, in that, he dreads unpleasant future events so much, that he experiences them much before they actually happens.

So when the event actually happens he is already halfway through it

While I am on my trip , we talk on Facetime on our Ipads for the first time ever and its lovely .

I LOVE technology – I sing songs to R and he demands I sing “Dancy dancy dance “.

He keeps trying to get me to sing more songs though its time to leave and I am loath to end the call, so hungry I am for how he dances around the room giggling in excitement

Reading

We have been really working on comprehension skills with R .

Like many hyperlexic kid, R could read by himself at 3.

However being able to read does not mean, being able to comprehend

He is tutored for 2 hours everyday on this

He is getting so addicted to books.

He is as excited about going to the library as most children would be about going to a toy store

We discovered a new series of books. "My numbers books" by Jane Moncure.

These books are very childish . But that is where his level is and so they are perfect for him

He spreads them around and enjoys them tremendously , gloats over them in fact

He talks about the museums a lot ( yes the same museums in New York that he was so lackadaisical about).

With his therapist, - and then he wants to say something about the Statue of Liberty, but he is not able to articulate it properly.

So Gypsi hands him a white board and he draws this .. he went to see the Statue of Liberty with his Papa

I am so delighted with the picture , DH could literally use it as his passport picture ( almost)

Miss Gypsi shows him books and makes him describe pics

He is finally starting to get this and describes the emotions correctly ( rudimentary emotions )

Like in the following picture - the two characters have gone outside and are having fun playing in the rain - but the sun comes out and they are sad

R identifies correctly that they are sad becasue the rain has ended

Outside time

Though its hot and sweaty outside, R loves to be outside these days

He also has taken to wandering around the front yard.

The other day he was off to visit Matt, his therapist's fiancee. His house has a lot of coke and sprite and clearly R think this makes Matt, king.And us, mere peasants.

One day he is pestering DH to take him to Kroger to "meet coke and sprite"

When DH tells him exasperatedly that he should just go by himself, R sets off ,

In a panic, we discover that he is not home and start the hunt

Luckily while he was off to Kroger , he is distracted by our neighbor's flowers and is busy playing with them

I and DH resolve to never joke about this kind of stuff with R, as he does not get irony

We discover interesting bugs

Friends visit

Have you ever met your online friends and though you are meeting for the first time its like you have known each other forever

This weekend I met with one my friends and her family from my blogging life - it is SOOOO awesome

I have to laugh when I see the spread we have laid out for them.

Along with the homemade breads ( carbs are my thing ) , we have prepared bacon, ham and sausage

( pork is DH's thing- and he has not been discouraged in the least by recently taking R for his first movie - Charlotte's web- which is all about a little pig who is trying to not get slaughtered )

Here she is - isn't she beautiful ?

We had to laugh at how alike our husbands look ( we have often joked how alike they are in temperament )

We have so much fun with their kids

Their daughter is so funny and charming - my friend tells me stories of her school that have us in splits

Their little daughter has a "boyfriend"

He is the Head honcho in his class

The reason for being the head honcho is that he has the whole trifecta of amazing qualities which are as follows - 1. he can tie his shoe lace, 2. he can snap his fingers AND 3. he can whistle

The little girl has an admirer who is always bringing her presents- like toothbrushes and combs ( which it is suspected that he steals from his sister )

R is SUPER stimmy - but we have made it a law to not keep "correcting him" when he does this as long as he is not ill mannered

Plus , for some reason he is stressed out. And telling him to stop using his coping mechanism( however odd they may look ) makes no sense

When they leave, my friend jokes to her husband that I probably know more about him than he could imagine

DH asks me later - if all my online friends know a lot about him and if I complain.

"A little bit", I answer though honestly there is not much to complain about "mostly I wish you were a neat freak and you gushed over me" ( for I am a praise junkie )

"Come on" - I add - "there must be things about me you dont like , something you wish I could change"

"Nothing," says my love

Nashville Trip

When R was really little, DH and R would come with me when I went on a business trip if we were at a drive able distance. We would just take a little therapy break

Now with school that is no longer possible - but since its the summer , DH and R come along with me to Nashville

Since I have traveled so much this summer, I am very grateful to not have the extra guilt of being away from R

The trip is very arduous, as in the facility I am having my meetings, the airconditioning is off and its 95 degree weather

We take a break to go to Starbucks - and guess what we see in the Parking Lot

( everyone walks away unscathed thank goodness )

While we are driving back, we find that R has lost one of his books ( which is a library book and we will probably have to pay 30 dollars or so in fines ) in the Hilton , plus we have left my french-press mug which was a gift from DH and much prized by me

This one - how cool it was

DH and I bicker about exactly whose fault it was

According to him, its my fault, as I always bring too many things and also was texting him while he was packing which distracted him

According to me, I was right, because he should have looked under the beds as R spends so much time on the floor and he was doing the packing up

We bicker ( for we really no longer fight ) away.

And suddenly I see R trying to get my attention from the back seat - for he hates us bickering and is trying to distract me

"I love mama .. I love mama .. I love mama " he is chanting, with that eager expression on his face

Its true , life is not the breaths you take,

Its the moments that take your breath away

Sleep and Autism

2011-07-14T23:31:00.000-04:00

Before R was born,  I meticulously read up on all the latest parenting books

Especially the ones on sleep

For it seemed - sleep problems- is all that the new parents I knew, talked about

I read about sleep scheduling, about the importance to get your baby started on a proper routine

I read about "crying it out"

And how it was really good and kind in the long run to let them cry it out

That by leaving them to sleep by themselves, you are teaching them to be independant

This had made complete sense to be in the months when I was expecting R

But after R was born, I felt different

This little baby had been living inside of my body- till just a few days ago - completely dependant on me -

While independance was important , it felt more important to make him feel secure

( Now, I reasoned, how would it make sense for a helpless infant when it made no sense for me, an adult -  After all how would I - an adult - feel , if DH would leave me by myself to "sort my feelings out"/" teach me independance" when I was sad/crying )

And though we tried, R simply was not able to sleep by himself

(  I dont mean to criticize the scheduling method - I know it works for many people. It was just not for us and I would realise this much much later when I was to understand SPD and learn about the proprioceptive system and gravitational insecurity. Much later, I would realise that R simply could not realise where he was in space, unless his body was touching another)

It seemed that the only way R would fall asleep or stay asleep was in one of our arms

So we decided to co sleep for just the first few days

And the days turned into weeks

And the weeks turned into months

Our crib - an expensive gift from a friend - was never used .

And R slept in one of our arms each night

Slowly, in fact , we found ourselves to be full fledged attachment parents

I did not know it then , but it would eventually be 5 more years before R would sleep in a big boy bed by himself

Sleep has never come easy for R

For a good night's sleep , we have to do it all

The behavioral methods- consistent routines

The biological methods- soothing bathtime, dim lights, melatonin

The emotional methods - reading a story of his choice, saying bedtime prayers, snuggles and telling him each night how much I love being his mother

But he does sleep each night

And mostly he sleeps all night

I finish his bedtime a little while ago

We say our prayers of gratefulness

We say goodnight to the fifteen books that are on his shelf

We finish reading "Wild Cats" - R's favorite bed time book for the past two months

I end the book with the line "The big eared cub sleeps safe and sound as it rests besides his mother"

R sighs with staisfaction.

Its his favorite line

I look at my own little eared cub with his arms around his neck and think about this other mother - the African lioness

How this mother in a small southern town in America ( me ) is essentially doing the same bedtime routine as this lioness in Africa

When I look back on those early years - that time when we did not know what was autism, how greatly anxious R's basic personality was, the unusual sensory system he had and his inability to produce enough melatonin -

Even in those years when we had such little information about our child

We still had enough wisdom-that each time we had to make a choice
We followed our instincts

We chose the ways that worked for R

This post has been written for the wonderful Danette's Best of Best Bloggers edition on Sleep

What we did in June when we werent in New York

2011-07-12T11:47:00.003-04:00

While me and a couple of my colleagues were returning back to the hotel tonight after a long day of work , I was thinking of an email I got from an old friend about why I had not written in my blog for so many days
I replied to him that I have been too busy being "inlife" to be "online"

While that is true, I miss blogging terribly.

My posts provide me the great opportunity to go back and look back at how things were last year or the year before that

A greek philosopher said that those that journal get to expereince happiness twice - and this is true of this 21st century blogger typing on her Ipad, as it was true of that old greek dude scrolling on his papyrus

Once you start to blog - you realise that all the years you did not blog are gone
Sometimes I look at old college pictures ( thanks to facebook ) and I wonder -

who was I then?

What did I feel about things?

Was I happy? Did I know I was happy ?

Al those pre-blog years that I cannot relive -

For now those years are just re-interpreted through the eyes of a 36 year old woman, not seen through the eyes of a 18 year old

And this is why though its midnight and I am in a hotel room at the end of a day that began at 5 am, I am looking at my photos and facebook updates to gather up this month , before its lost

My phases as mother

I do not know if this is true for you - but I am not the same person all the time
I usually have three phases as an autie mum - this third phase I discovered in June

Incarnation one: The Active mum :

I floortime with dedication everyday.I read a lot about autism . I look for new methods. (In my recent phase of this I actively researched The Son Rise Program.)

Incarnation two: The Guilty Mom :

I am burdened by a feeling of not doing enough. Either my workload is high, or I am traveling a lot or we have guests at home. I feel incredibly guilty and keep thinking about time and the scarcity of it in my life. (Sometimes I do not even have any distractions to blame)

Incarnation three : The Passive mum :
This phase is one that I saw recently this month . I do not think about therapy or autism. R is just my child and not my child with autism .

Though this phase has passed – I really enjoyed it.

I did not clock watch – felt happy lounging on the couch watching TV with Dh after work.

I did dinnertime, bed time and bathtime, cuddle time with R – without a THOUGHT to “building neural connection”. Or analyzing R in terms of Floortime levels or anything like that. ( I think this is how many Autie mums think )

In a TV show I was watching recently , an actress goes to live with the Amish.

She asks Amish woman with exasperation “don’t you ever get tired of never being able to want anything?”
The Amish woman replies “don’t you ever get tired of always wanting something?”

In June I had times when I felt like the Amish woman with regard to parenting .I did not want anything.

It was nice.

Is this the kind of mother I would be all the time if R did not have autism ?

While I enjoyed Incarnation three very much( which would seem intuitive as it involves very little work) , I actually enjoy Incarnation one very much as well !

Even though being an active autism mum involves lots of hard work and thinking.

I think its because I actually enjoy Floortime very much. I can literally see R blossoming when we “play with purpose” and as he expresses new ideas and thoughts it gives me an incredible window into his world.

Plus it makes me feel connected to him.

Not just in a heart connection – as mother and son.( thank goodness I always have this )

But in a mind connection – as mind to mind

It was interesting to discover Passive mum in me and even more interesting to discover that active mum is just as much fun

Often in Autism-land, mothers wonder how we can have a chance at happiness – as we have to work so very hard.

The implication being that the presence of so much work will leave no room for happiness.

But I wonder sometimes if this hypothesis is true and if a life full of hard work can also be full of happiness

Picnic

DH and I decided this month that we would do more things outside the house.

So we decide to go on a picnic on the bank of a little stream we have by our cabin

To our great surprise – R is elated to go. "We are going on a picnic.. we are going to have a great time” he tells us

This unusual loquacity is explained later as R is reading a book with Miss Gypsi on picnic

I make a list of all the things to pack in a picnic basket and R helps me pack our basket .

We cross everything off the list and off we go

In accordance to the script we have a great time

We walk in the stream, look at frogs and butterflies

There is a storage unit nearby . Each unit is identified by a number which thrills R no end

Canoe trip

The Open Doors organization sets up a canoe trip which is also a lot of fun .

DH and I decide that we really need to get a little boat ( one in which R can stand as he is very eager to do this on our canoe and keeps pleading that he wants to go to Papa so that he can walk around the canoe )

We go swimming every weekend ( barring the one that we are in New York ) even though the water in the pool is chilly.

We have decided to do something outdoorsy everyday this summer

They say that one of the best treatements for ADHD is being outside

They say one important condition for neuroplasticity is aerobic exercise and we are taking full advantage oof the summer

Enjoying process without results

R HATES to color - DH and Miss Gypsi wisely deduce that its because he cannot color well

So DH get him a lot of paints and just leave them hanging about for many days - he loves looking at all the bottles

Then one day he asks me himself to open a bottle

And last night I ask him if he wants to come with me for a walk or play on his computer and eat trail mix ( this latter is his favorite thing ). But to my joy he says

"But I want to paint"

He is producing no Picassos - I can tell you

However he is enjoying painting which is the whole point

Asking for something

R almost never asks to buy something - but this one time we are at Marshalls - and he INSISTS on getting red shoes and he really preens in them saying " my new red shoes"

How adorable is that

Scripts as the scaffolding of language

R is using a lot of scripts these days. Some professionals believe that scripts should be discouraged

But we actively encourage scripts. ( thanks to some great advice from Dr Nancy Kauffman)

Scripts are the scaffolding of language. Especially for children like R who have many thoughts and not many ways to express them

Plus his scripts are very very appropriate

The other day when I am scolding him for going on the road he sobs through his tears "Dont worry Blue "( as he is clearly worried )

He uses his ABA apps ( kindergarten.com) on the Iphone a lot as well . He is forever making little observations about the world around.

If he has a cut on a hand - he will show it to me and inform me piously of my duties "you put a band aid on a hurt"

Joint attention is just an amazingly blossoming skill

Sometimes his observations are very very apt.

But sometimes they are very funny – The other day while I am making tea in a saucepan, R points to the pan and says “that is a frying pan” .

I lift him up to show him what's inside ( tea) and ask what's inside

"Bacon" he replies
For instance the other day I am talking to my MIL – who expresses her worries on R’s future .

I tell her how Dh and I always approach just the next step and no further and that I don’t know what he will be but we have a lot of faith in him

I have to laugh when R who has been on the Ipad and not appearing to pay any attention at all to what I am saying

He takes my hand and belts out a Blues Clues Song “ you can be anything that you want to be “

And he is right

The importance of being kind ... to yourself

2011-07-05T22:24:00.001-04:00

I am on Hopeful Parents today talking about the importance of being kind to yourself

If you have a minute, do visit that lovely website

If you hate to click links here is the post

On being kind .. to yourself

There are some of lovely things that have come to me, as I growing into my role as a special needs mum
( For as a special needs mum, I am a mere 4 years old,still learning my way )

One of these lovely things, is finally learning to look at myself with kinder eyes

All the books for autie mums and dads, tell you that more is better

That you can never do enough

And so you start to look at yourself and your days with all the things that you could not do

And all the things that you could not be

But, this is starting to change for me

I finish bedtime with R’s current favorite story “Wild cats “

I read out the final line

“And the big eared cub is safe and sound as it rests besides its mother”

And, while my own small eared cub, rests besides me, I assess the day in my mind

But, deliberately today, I count not the hours, spend in things I didn’t

( cooking, laundry , making a brunch for some friends –everyday chores that autie mums/dads are supposed to feel guilty about, as its time away from the all important parent therapizing )

Instead, I count, all the things I did

Negotiating on the importance of keeping the band-aid on , blowing bubbles, singing many songs, taking the “Little einsteins” for a jaunt down the mountain,

And all the loving (for this is may be my great talent as a mother )

And the day feels well spend

“Ring the bells that still can ring

Forget your perfect offering

There is a crack in everything

That’s how the light gets in”

Leonard Cohen

What we did in June: The Great New York Trip

2011-07-01T09:48:00.002-04:00

The Great New York trip

I had a conference in New York city and since school is out for R , DH and R decide to come along with me .

We come in a day early and are staying in Times Square .

R does beautifully in the flight

I have brought along a whole folder of activities for R to do. But he is finished with them in the first 30 minutes

"Dot to dot" art Is a breeze for him!Coloring he does not much care for

Little ( like really little - Nick JR 3-word type) crosswords are really really easy for him..

This is something he would not even look at last year and I am delighted !!

The last time I stayed in times square, many years ago ,

I stayed at the Radisson . I still remember the tiny dingy room that smelled of years of cigarette smoke with some horror

However the Marriott Marquis on Times Square where we are staying is amazing . The lady at the front desk is very very nice and gives us a room on the 43rd floor

The child loves hotels and he is very happy when we reach our room using an amazing transparent elevator\and spends a lot of time looking down

Metropolitan Museum of Art

I am very excited about going to the museum as I have never seen a real van gogh, Monet or Renoir

We walk through Central park .. R astride on DH's shoulders.

I point out all the places that I think I am certain I have seen murders in various law and order episodes ( most people here are exercising - though my impression through TV is that this is a favorite hunting ground of criminals - and that meeting one's end should be the expected outcome)

R is very whiny though and keeps on asking about going back to the hotel.

At the museum R is barely interested in the amazing paintings on the wall.

I am bitterly disappointed at his lack of interest as at home stares at his posters of these paintings with rapt attention .

( however DH explains later that he probably does not know the difference between his poster prints and the actual paintings .. And to his logical mind .. It may be us who are strange for making a big fuss over these pictures that we actually have at home )

Finally one of the guards tells us that he cannot carry his empty coke and sprite can . He sits and cries and cries .

( the guard is a little rude too which is upsetting to me . Though perhaps , I only find him rude and cold as I am very spoiled by living in a small southern town- where people are gentle and charming and always act as though they have all the time in the world ) .

The beauty of the museum is ruined for me though DH is sweet and tells me to "take a round" while he sits with R

I wish I was alone with DH and I feel guilty at the thought . I remind myself that when r is all grown up I will miss being with him so much

It seems to me that mothers of small children miss having any "me time" and then empty Nester's miss having any "we time".

And the trick is to remember what we have and enjoy what is good in it..

Knowing we won't always have it.

I think one of the worst things must be to look back on life and remember how happy one was and how one did not know it then.

We eat a very nice dinner at an Italian restaurant..(DH and I are fascinated with Italians owing to all the Italian culture we have been seeing through the sopranos.)

R behaves impeccably and eats a whole pizza to our surprise

The next day goes much better ..

Its not that R is much different, but that i have adjusted
( is this not true of much of life? ) .

I have made a schedule .

We have allowed for plenty of in between time .

Lunch is a McDonald's . Our expectations are reset.

I have already anticipated that the Museum of Natural history will be disappointing as R has been calling the museum "dinosaur zoo" and I know the paltry skeletons will be a let down.

I and DH enjoy ourselves hugely

R is largely unimpressed

He sits next to this majestic skeleton with a nonchalant look - playing with his 1 dollar foam numbers !!

This place is just made for kids and I enjoy digging for dinosaur bones with R ( I think I enjoy it more :-) )

We go to the empire state building in the afternoon.

Great view but SUPER crowded - Love the flower gardens on the terraces

The other two days, I am at the conference and DH and R go to see the statue of liberty and have a great time at the toys r us on times square

Toys r us surprisingly is where R has an absolute blast

Somehow its the ordinary things along with all the museums and landmarks that make NewYork so amazing

Like Street art for instance

The naked cowboy and cow girl etc ( which I dont think I got pictures of )

We loved the cordoned off streets - all the colors of skin and accents around us . Manhattan is a microcosm of the world
At one point I actually see a sign "DOSA" which is a specialized Indian Pancake

We have a lovely time on Times square with the Jumbotron which to R's delight has many ads for Coke and Sprite

The food is pretty amazing as well , though I must say Chicago style Pizza is much more my style and New York stye Pizza just seems so unsumptous in comparison ( no doubt its much much healthier though )

Everything they say about New York Bagels and New york Coffee is true

New York is amazing , though DH and I decide that we probably will not come back here with R until he is 10 or 15

I dont regret it though .

Everything we do, cannot be for our role as parents or to provide an educational experience for R

Though R and helping him develop is the most important thing in our lives, there has to room in this life for me, for DH and for us as a couple

Screen time and the Autistic child

2011-06-13T23:11:00.002-04:00

There is much there has been said about the problems of screen time and autistic children

There have even been studies that claim autism is caused by screen time
( one of my friends calls a famous series of videos – as Baby Autism and not Baby Einstein)

We read that fire together wire together and that the neurons pathways being formed with too much screen time are not the right neural pathways ( this is the downside of neuroplasticity )
I know I myself have worried about this myself

However the stellar Danette's BOB will have some wonderful bloggers post on the whys and hows to set limits on media

So I will talk about a few other aspects around media in our lives and how DH and I think about it and limit setting
The first aspect is about how DH and I approach R's day

Our approach thinking about what we want his day to have – instead of thinking of what we don't want his day to have.

These are two very different approaches So for instance we want each day to have to have the following parts

1 part reading comprehension and conversation
1 part physical activity, sensory , outside time
1 part foundational physical ability ( ST/PT/OT )
1 part Floortime

The rest of the parts to be filled with daily logistics, love fests ( which my little one gets an extraordinary amount of as we are a very demonstrative unit ).
The above is a very different way of thinking about the child's day, than an eliminiation perspective,( for example , simply thinking in terms of "no more than 2 hours in front of a screen")

Second , we do want him to have portion of downtime – whatever-he-wants-to-do-time ( honestly I feel this is a basic human right that well-meaning loving parents often dont think about this)

Fourth, we give him a reason to want to be in our shared world.

We entice him into the non-screen world.
Screen time IS addictive – but so is play - and social interaction ( yes , even for autistic kids )

And as long as we have the energy, we find many many ways to keep him in our shared world

The fifth aspect is how we use media as a way to connect with our child. Our Floor time psychologist observed us interacting with our son last month .

She observed that we initiated many interactions that he ignored.Her recommendation was that we need to build up a repertoire of things that get us a "wow" reaction from him .

These wow things are what we need to build interaction around

(One of the strongest findings in neuroplasticity, the science of how the brain change its structure and function in response to input, is that attention and emotion is almost magical in its ability to physically alter the brain and enlarge functional circuits.)

Not surprisingly many of these "wow" factors for R, are around media

And so I look for ways to use media to get a connection going.

And I find them

So for instance,I and R play with blocks when he watches Little Einsteins( a show ) - enacting the way in which the " little Totem pole" triumphs with the help of the Little Einsteins.

Finally,as I look to the future, I am very glad we live in a digital age.

Not just for me ( though the internet has been a huge boon for me - helping me reach moms, dads, professionals and methods - including Floortime - that I would never have had before )

But also for R .

I can see R connecting with other like minded people through social media - better than I see him connecting through "play dates".

I can see a career with computers

We are living in a digital age and its more for the better and less for the worse .

This post has been written for Danette's Wonderful Best of Best Bloggers to be published sometime in June

What we did in May

2011-06-05T08:38:00.001-04:00

I have been absent from the blogosphere for about 3 weeks now . Too much work .And too much life happening. Promise to visit all my dear bloggy friends this week and catch up
I did take pictures on my phone this month and so I am writing about it month while I still remember, for the sake of reminiscing later.

IEP meeting

We had an IEP meeting at school. His overall plan is good

Half regular ed with shared aide and
Half day special ed with two teachers - both of whom we really like

DH and I think this makes sense

The most important accommodation we are hoping to work out - is that he come to school late to he can do his speech therapy in the morning. We think we will be able to arrange this

Evaluations

This has been VERY painful as he tests HORRIBLY

His teacher showed us some test results - painful to read

Example he did not answer questions like _6_ .. as in what comes before and after 6 ( he has known numbers since he was 3 !!)

Glad his teacher sees his strengths

She said rightly that there is an intelligent child in there - but that academic success is about how well you present. And not what is in your head

Much as it is painful - she is absolutely and completely right

Reading comprehension

In terms of just reading - R reads at the 2nd grade level - but his comprehension of sentences and concepts is poor.
I talked to some of my friends and Reading Comprehension is really one of the biggest problems ( whole post coming up later on Reading comprehension )

We reminded our whole team that R has only understood language for the past one year and so to think of his comprehension issues as a 3 year old and not a 6 year old

Once reminded, they were all amazed at how far he has come. Its amazing how quickly we forget the challenges we have already overcome and get fixated on the challenges yet to come.

Its his ability to travel that we need to demonstrate.

I think everyone - even educators custom their approach on perceived capacity to learn and that is why we need to always show that his ability is great

Tonsils surgery

DH "spontaneously" decides to get his tonsils out . His doctor has an opening that week and the schedule it right away

I read about tonsil surgery recovery on message boards and hear about how painful and horrible it is .

I plead and plead with DH to not have this surgery but DH claims those people are "wimps and pansies" and have "milk running through their veins".

That all I need to do "drop him back home on Friday after surgery and just go back to the office after that".

However after the surgery - we realise that those people were not wimps and pansies after all and that their describing this surgery as the "worst torture anyone could go through" is actually rather an understatement.

We have a difficult week as DH is in a lot of pain and I have to do a lot of things that DH does ( like grocery shopping, carrying laundry here and there, getting R ready for school etc )

Though its difficult there are many funny moments too. Like one morning, when I forget to call in the day to check on how he is as I am running from meeting to meeting, I get a voicemail from DH which goes like this "

"if you are done putting the man on the moon, maybe you could find a few minutes to call to check on your husband".

My big strong DH is not usually prone to self pity( that along with a tendency to martyrdom is usually my thing) and this voicemail makes me laugh till I cry

The start of summer vacation

How can I describe the glow on R as soon as school is over?

I think being home with DH is one of the most therapeutic things for R.

DH is one of those people who carry a very calm, soothing and accepting atmosphere.

The thing that worries me is what will happen when school starts - its an even longer day and I just wonder if it will wring out R

Though I love his teacher, school is becoming a great source of anxiety for me .

I wish there was more flexibility - that we could do school for 3 days and a kind of homeschool with therapists for 2

Its difficult to leave home everyday as he watches from the garage door dolefully - can you see him standing on his toes watching me leave sadly ?

Mother's day

One of R's therapists gets him to make a Mother's Day card - she writes down a social story about Mother's day
I adore this card and stick it on the wall and R beams with pleasure

Play and Language

His spontaneous language is coming along great

The other day his PT was stern with him and he told me later when I asked him mean and mad"

When I asked him how that made him feel , he said "worried"

This is really great language expression for him

His pretend play skills have increased a lot

He goes around finding spider webs and singing "Little Miss Muffet " to them

He plays out his version of "The wonderpets Save the Dinosaur " by trying to get me to rescue bugs of all sorts who are "trapped " in spider webs . We must sing the wonderpets song and rescue them

One of the "Little Einsteins" story he loves right now is about a little totem pole that gets "build upon" and becomes a big totem tale thanks to the shenanigans of the and he replicates this with megablocks
This is his version of the "Tall Totem Tale "

Music

One of the things R loves most is music and song

Earlier it used to be me who would make up songs for him and now its he who is always adapting

His current obsession is "Coke and Sprite" ( no idea why )

There are also some super geeky parodies on youtube that R watches regularly ( the guy who put up that video must be wondering at the great increase in views :-) )

He also takes basic songs that he will sing to the different words

For instance if I take the tune of "There was a farmer had a dog , bingo was his name o "

and take it to "there was a green bottle with sprite.. sprite was its name o "

he will quickly make the same song about Coke and Fanta

His music interest is burgeoning as this week he goes to his teacher and play a tune ( Mary had a little lamb ) that she has never taught him but he learned from Nick Jr

The other thing I am pretty impressed ( but I am easily impressed by R ) by is how he notices the patterns of music. He keeps organising songs by tunes.

While a sing to him all the time - I have never noticed this until he points them out ( like the ABC song, Twinkle twinkle little star, Baa baa black sheep - all have the same tune )

Engagement

His general engagement in life is great right now. The other day DH and I are bickering in Walmart ( stupid AT& T has bad coverage and we cannot find each other ) .

R for the first time ever - takes my hand in one hand and DH's in the other and puts our hands together -

He is constantly dragging me everywhere with him ( another reason why I cannot blog ) to do experiments like learn about shadows by looking at the shadows of numbers
( I really love this )

He still expands in breadth and not in length -

like if he has a theme going on - where all the Little einsteins get into the rocket to fly away in a mission - that is where the story ends .

If I introduce an idea - like get a bunch of "umbrellas" from DH's bar ( very enticing I think- colorful perfect replicas of umbrellas ) and say that The Little Einsteins have landed on a rainy island and need umbrellas - he will promptly reject my idea

This is the crux of Floortime - to have a long unpredictable exchange.

You start with their interest - but the idea is to take the exchange down unpredictable paths and have the child come along

What I am noticing however is that while he rejects my idea at the time - he will try it on a little later .

So later that afternoon he takes the Little Einsteins with unbrellas .

And this morning he informs me that "rain and umbrellas go together"

I think Autistic children have many ideas and thoughts and its us that are not usually able to see

I think if one has an NT child or has had spend a lot of time thinking of and longing for an NT child - its hard to see the beauty of the special needs child .

Its like the son and the moon.

And how you cannot see the moon when the sun is out bright and shining

But for DH and me who have only known our autistic son .

For us there is no longing for the sun , we revel in the beauty and magic of moon light

I wake up in the morning with my head on DH's shoulder and hear a small doleful voice at my side

"Mama is hug Papa .. papa is hug mama"

The child hates being left out

DH pulls him up between us and he says "mama and papa hug R"

My little family

My circle of love

Stress Anxiety and Autism: SOS Best of Best Bloggers

2011-05-14T10:00:00.002-04:00

Temple Grandin once said that fear is the primary emotion of Autism

I often think of this when I think of R

My gentle sensitive child

( I believe, in fact , that fear is the primary emotion in all Autistic children – even those who have aggressive behavior.
A child may respond with an angry meltdowns, another may shut down and a third child may show deep distress.
But even when it looks so different its simply a response to fear – the only difference being whether the child's instinctive response to fear is fight /flight/freeze )

And this fear can lead to a lot of anxiety and stress

I know it does for R

For if you think of it our vulnerable auties show immense courage going out everyday into a world that is so contrary

Where they are constantly being taught

Where many things that soothe – like humming etc - are treated an inappropriate stims that need to be extinguished ( merely on grounds of looking odd ).

Where no one ever thinks of their rights to just be who they are

Or of their right to have unscheduled downtime

In addition, they often have parents who keep wishing their child would change and be that version of the child that they were meant to have( even the parents that love them deeply )

And there is another stress to deal with as they grow up

If autism is such a big part of their personality and if all their life they are told that( explicitly and implicitly ) autism is a very bad thing –wont they feel at some level that there is something very wrong with them?
With all the ways in which their self esteem gets attacked, no wonder anxiety is a constant companion

I used to feel overwhelmed in the beginning thinking of all the things that I would not be able to solve for R ( sometimes I still do )

Especially with regards to his anxiety

For he has so much of it

So small and vulnerable he seems sometimes.

And so large and hard the world seems

But two things have helped

The first is realizing that I don't actually have control over how the world is with R

( I had an epiphany one day while reading "The ovely life". In this book, Vicki Forman writes that all mothers believe that they can prevent anything bad from happening to their child if only they pay enough attention. On reading this, I realized the belief that I had been torturing myself with - that I could have prevented or cured autism - was actually untrue )

Feeling in control in the way we sometimes talk about it regarding parenting, is an illusion

If anything, the paradoxical truth of control is that the only way to have control , is to be fully aware that you have very little

The second thing that has helped, is knowing that while I have no control over the world – I am fully responsible for being the kind of mother I want to be

And that I am fully responsible for the reflection my son sees of himself in my eyes

Knowing that I and his father have a big role in his self- concept – we have chosen to treat him always, as a priceless gift

For really, anxiety and stress can be reduced in two different ways – one way is to make the world less stressful

But the other way is to make them feel that they are able cope with the world – by boosting their self esteem

And so I have chosen to be a deeply adoring mother

Never thinking – let alone alluding – to a wistfulness for a different life or a different child

"Do you know you are the best thing that ever happened to papa and mama?" I tell him each night, in his bed time routine , "you are the child of our dreams"

In this way, I put a coat of my love on him , to protect him from a world that is sometimes too cold

So that, no matter how much life whispers insidiously, that he is disabled, broken

His inner voice whispers back -no I am not, I am amazing

And as he thinks, so he will be

Please join the fabulous Danette in her Best of Best Bloggers Event where bloggers share their POV on Stress and Anxiety tomorrow

Rewriting your Story

2011-05-05T07:52:00.003-04:00

Once life drops a challenge like Autism, we realize that the story we were living in, has met with an unexpected twist

In the minutes, that it takes the psychologist to tell us that our child has autism, we can find that our story is going to be completely different from that of our friends.

That, in fact, we are going to be living in a completely different genre of stories

We search for those with stories like ours

And we find them

We tell them our story

And we listen to theirs

We give comfort

And we feel comforted

And that was the way it was with me

But as time passed, I saw that I could rewrite my story

Indeed it was critical to do so

I realized that the most important story that I will ever tell, is the one I tell myself.

About me and my life.

And that I am not just the central character of my life

But also the author

Its most important audience

And the narrator

And so the story I started to write, has become a story of gifts and gratitude and love

And not a story of loss and fear and guilt

And I see my child as different, even gifted

And I stopped seeing him as broken

I have come to see the difficulties of my life

But am still deeply aware of its essential sweetness

And I find that I am not living in a sad story

Or a make-the-most story

Or even a second-best story

And that the story that began so promisingly with “once upon a time” does end on a “happily ever after”

Because this is my story

And that is how I write .

This post has been written for Hopeful Parents. If you have a minute do visit that wonderful website here

A Floortime Consultation

2011-04-26T14:04:00.005-04:00

Dear readers who don't have an interest in Floortime – you may find this post boring - please feel free to ignore this post

Sometimes Floortime goes really well – like it did in the first couple of months of the year

And sometimes it does not – as its been these past month and a half I have been feeling a stuck in Floortime – not knowing what to do next and also feeling a certain dullness of spirit –

And so DH and I decide to go to a nearby city and resume our meetings with our Floortime Consultants ( FC)
It really is not the most auspicious time for us to go for an consultation as R has this dreadful mouth allergy – which has got infected and so he was in a lot of discomfort –

I ruefully say to DH that she will probably spend some time with him now and tell him we should let him just play with a string for the next few months

However DH is much more optimistic than I am and is confident that we will be able to show her his abilities and so off we go

We met with the consultant for 4 hours over a couple of days

Here is a summary of what we learn

Obviously our FC's recommendations apply to R ( the I in DIR stands for individual ) and to get the most benefit out of Floortime its best to work one-on-one with a professional who knows you and your child

However not everyone can afford a FC or is following a Floortime based home therapy program.

Our FC is an excellent psychologist and some of her excellent advice could help any autistic child ( heck it could probably help any Neurotypical child – or dare I say – adult )

Here are some excerpts from our sessions:

A Floortime session in the consultation

R is every bit as distracted as any child would whose lips were cracked and bleeding would be

When we enter the consultant tells us to show us how we play with him
I try but am ignored by R

We tell her that R need to explore the office for a bit which he does
He is a little distracted and stimmy but shows some flashes of his usual self

Once he makes an elephant from blocks – the ears wont stay on and pushes the elephant in frustration
He holds the ears in his hands and looks sadly

The FC asks us if we know what he is thinking

I explain why he is frustrated

R comes to me with his ears and then I say "are these ears?"

He puts them on my ears and I "become" the elephant

The FC is thrilled and exclaims "that is what I am talking about.. understand his feelings .. respond to him without any judgment"

He plays with her wind up toys ( her favorite Floortime toy )

He plays with DH for a bit with cars

A few times I try to intrude and he is annoyed and goes to DH for comfort

One of DH's great strengths as a floortimer is that he is VERY patient and never in a hurry and can intuitively take R's pace

Several times he and she and we play with wind up toys and hand puppets who eat various things

A Floortime Session with the FC

This takes place the next day

When we go the second day – R surprises us with his eagerness to go inside the and says "All done living room ….go Play with Play doctor"

He asks to play with "the Food and the woof ( dog ) "

He knows in the food box, there are 4 Pizza pieces and he wants to put them together ( I know this as he has been learning Fractions on Morestarfall )

However the consultant goes through several circles of communication with R trying to collect the pizza pieces and the dog taking them away

( An important tip – when you are being the hand puppet – you are the hand puppet – so you don't say in a narrative style " The dog wants the pizza "
You ARE the dog and you say " I want the Pizza ")

But the dog wont let him and keeps taking away a piece in his mouth

R is very bugged by the dog and holds the toy dog's face and throws it to the corner

But the dog always comes back

DH becomes a spider and intrudes also

The FC – tells us – "don't be easy to ignore .. be persuasive .. be intense ..be in his face.. use fewer words … be relentless"

This goes on and on

And here is where he surprises us

Since just throwing the dog away did not work 2 or 3 times -- He finds a toy chest and puts the dog into the toy chest and shuts the chest

The FC exclaims in satisfaction – "THAT was beautiful – he solved a problem"

( this is how you build the problem solving muscle – and make no mistake – it IS a muscle - through Floortime )

The FC tells us that we need to be in his face , high affect ,

Here are the main pointers from the Floortime Consultant for R

Why does he play for a little bit then go away ?

Because its too much ; he needs to regroup and process and then be back.

Should we let him leave or should we pursue the same theme? She said, if she feels he needs a break then she would let him. However if he is just avoiding for another reason she would pursue further.

Play dates

We should do playdates – but with one child ( no social groups – as R would find it easy to fly under the radar in a group ) preferably a girl who is 7-10 years old – According to the doctor these are the best Floortimers

She says she trains some High School students but that her most important instruction is always that they both have fun and have joy . The biggest goal is pleasure

Aides in School

Aides tend to become compliance enforcers and that is really not required for him – he needs an angel on his shoulder that keeps reminding him to reconnect with what is going on in the class- for instance if he shows manipulation skills – the aide should feel joy at that not shut it down
We don't need to be looking for a lot of independence either

How can we elaborate on Play Scenarios?

Step by Step :

R like many kids started to pretend play with sleeping and eating - example one play scenario is that – his dolls go to bed – we elaborate with snoring etc but there it ends –
He only increases the breadth – so his other dolls go to sleep …how can we deepen the plot ?

Her answer is that we need to make the game more elaborate but just adding one more step at a time –

So we could get 5 dolls to sleep and then do the song – 5 in the bed and then the doll falls down and so on
Or add an emotional idea – example one of the dolls says "that is TOOO LOUD " ( that is the doll is having an emotional response –feeling bugged )

In the eating game where we are feeding the dolls, add maybe an unexpected twist – preferably an EMOTIONAL idea like a joke – where the doll says that is YUCKY and spits the food out
The concept of joke and unexpected is HUGE

Go Slowly

There is no rush in Floortime – don't be in a hurry to climb the developmental ladder – build a strong foundation at each stage

Tailor everything to where he is Explore higher levels of Cognition

We talked about his several interests such an planet, numbers , music – She said we should take these further and further

We said that we found out yesterday that R knows multiplication and her response was that this flat and rote – we need to see if he can problem solve –

That is the point of following his lead into things

We want to explore the regions on his cognition that are not being touched currently

Don't ask him questions like" what is a triangle" he knows that – that is boring
We said – he loves his old familiar things – ( like Baby Einstein ) – she said that is fine – I am not saying take those away

But keep building on each interest

Example, if he can distinguish between Beethoven and Mozart – ask yourself the question – where could this take us

The idea is an opening up – of R have more, deeper and bigger thoughts and following a passion to eventually have grey area thinking

For in Floortime we are teaching how to think

Whether its numbers or planets that your kid is interested in - you are going to use it to develop the most important skills in Autism - relating ( making you a part of their shared world ) , communicating and thinking ( solving problems , metathinking - which is thinking about your and other people's thoughts , and grey area thinking )

She did notice all his strengths and thought of him as "full of potential" "has a lot in there" and said who knows you may have a mathematician in there ( but that honing rote skills will get us nowhere )

I also noted with interest that in developmental models you don't get any points for a well mannered/compliant child

Harness motivation in everything

Ask all providers – ST OT and PTand conversation and play therapists – how they are using his motivation – not just building his skill

School

The FC had lower expectations from school

They are going to focus on the building of rote skills that he will acquire anyways since those are the things he likes
It's the gray area thinking that he needs that school will not help him have

We talked about how we are thinking of mainstreaming next year as he is unhappy in the special – ed class
Her response that he probably likes the main stream class as he is able to ignore them and go under the radar

Where as his special needs class he notices them and talks about them later ( DH and I are not sure we agree- I think there is too much emotional energy he spends worrying and feeling unhappy )

She also said that before thinking homeschooling – just think about how much more you can do with the hours you have with him and when you are in charge – so if he has 30 hours of school – he has another 50 hours when you are in charge .

And that in her opinion parents spend way too much time thinking of how to optimize school ( where they have little control ) and too little time thinking about home ( where they are completely in charge)

We talked about our idea of a peer mentor and she said that in her experience this does not work too much as ist grade onwards school is focused on rote academics and there are very few opportunities to play and for a peer to mentor. She does not think it's a bad idea but does not have too much hope for it

How much Floortime is he getting?

I said we have Floortime as a lifestyle and we 30 mins-60 minutes daily.

And she said we have to do a lot more – get his therapists to modify their methods to incorporate Floortime
Intrude when he is on the computer but not in an intrusive way – example – get your own computer and do what he is doing with him

Outside help

Get some outside help – their only goal being that they both play with high energy and they both have fun

Physical Exercise

In her POV – the ratio of something physical should literally be 20 minutes in an hour
Jumping Swinging Crashing into things –

She said that he could start his day with singing and swinging – instead of computer ( which will only start off a self absorbed day )

All these things will help him organize himself

Computer

She said we should limit access to electronics and then maybe has access to computer/wii / DVD anything with a screen about max 4 hours and keep reducing and he has to ask for it

So he is not always choosing between computer and us

Avoid repetitive tasks

Neurons that wire together , fire together

If you are engaged in repetitive tasks - Neuroplasticity means that those neurons are firing together

Its not neutral

We brain – not an I brain

He spends more time in an "I " brain and we need to put him more on a "We" brain

Can you use even the computer to foster the "We" brain – can the computer have pictures of mom and dad
(Book Recommendation: Mind Sight Dan Seagal )

She pointed out several times how hard R is to engage and how much he ignores our overtures

How much of his interactions with him are very much on his own terms( ouch !!- while this hurt to hear , DH and a friend pointed out that is the definition of Autism)

Take the things that are best and figure out how to make them longer

So if he enjoys swings and snuggling and jumping – and see how to elaborate and make them fancier and fancier
Keep adding variations –at little variation on what they mostly like and that adds a twist
Look at all the games you are playing and brainstorm on ways to add a twist

Use the ways/ mode that get you connection

At that point in our conversation, R was building a Giraffe with blocks and we asked him "what are you making "?

R ignored this

The FC said, "Don't waste energy on what he does not respond to – for example " don't ask questions … don't do a narrative"

Because we can put out a lot of energy on what he does not respond to and get discouraged

Instead of speaking, perhaps we could use the written word and song

The FC wrote GIRAFFE and HORSE on two pieces of paper and asked him to choose after getting in his face

Then he made Steps and she wrote STEPS

Then we elaborated ..and the giraffe and Rhino went up the steps

And we made a song about the rhino falling down

R smiled at this and completed the song

Then I fed the rhino a banana

Always add the unexpected

The FC suggested that its very important to be unexpected – for instance, the rhino would spit out the banana and say "that is Yucky"

The rhythm of the interaction would be – expected-expected – unexpected – so if you are playing pillow sandwich – you would Add ketchup and mustard and then suddenly you would add ice-cream – that he may find funny

If he has a routine that he repeats in the morning – add a twist and say you are going back to bed ( here I added that wouldn't an unexpected thing be "stand on your head after you wake up " – her point was that that would not be as funny as going back to bed as it was not the twist on the same thing )

Going for the WOW

Make an inventory of everything that works – everything that elicits a WOW
You want to stretch stretch stretch and open the mind and open his life

Prioritize things that you like too

If there are things that the both of you like doing - - they go on the top of the list

Add drama to everyday favorite things

For example one favorite thing of R's is when I get home – So DH could do a countdown and then the real life event would be dramatic and exciting !

Neuroplasticity

She repeated that "neurons that fire together wire together "– example a 90 year old brain that takes lessons to play the violin will start to change their brain - which is why all individuals are capable of doing a lot more then what their initial capacity appeared to be .

So you have to make hay VERY slowly – but there is also no time to lose

Following your child's pace

2011-04-22T22:52:00.001-04:00

One of the most challenging things when you start with a home therapy program for an autistic child, is all the stuff you are supposed to do

All the aspects you are to work on

Sensory Regulation, Engagement, Problem Solving, Pretend Play, Peer interaction, Language - the list is endless

Though I love Floortime , one of the things that we found impossible to do was the usual Floortime recommendation of 2 play dates each week with a child

We did try

Our friends would offer to come over with their children when they learned that we were trying to get R to have play dates

R would be miserable and try his darnedest to get away from the child

The child would try a few times and then give up

And I would end up playing with the child

After a few attempts, we gave up

It was just pointless

(Yet I felt some guilt over yet one more thing we were supposed to do and did not )

But then we started to wonder , was ignoring this facet , such a bad thing after all

Perhaps he was not ready to learn peer interaction just yet

Perhaps it made more sense to focus on one thing at a time ( and there were plenty of other things to choose from)

And I think we were right

For suddenly this last weekend , whave a couple visit us with their kids

Lo and behold, we find him for the first time ever seeking other kids out

Wanting to be in the company of these two girls

Trying to play with their toys

Wanting to ride in their car

Wanting to stop by their house today when we are driving home today

DH and I have decided that this summer we will focus on Social Skills

I am often struck by how R seems to develop every ability, albeit in his own time

How much we save - when we try to follow his lead - in what to work on ( For isn't there always something to work on )

There is a time to plough the land and a time to plant the seed and so it is with raising children

Timing really is everything

And so instead of hurrying him along over the steps

We now let him take his time.

There is no rush, we say to him.

Feel that step firmly beneath your feet

We are ready when you are

This post has been written for Dr Boucher's Blog Carnival on Readiness which will be published on April 25th