Saturday, October 29, 2011

The last week of October

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 

Tuesday, October 25, 2011

True Story Tuesday; encounters with minor celebrities

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



video

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



Friday, October 21, 2011

Fall in the Mountains

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.

Tuesday, October 18, 2011

TST : Sleeping with Snakes


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 




Thursday, October 13, 2011

He said WHAT????


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

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

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

Well the reason I called” , she says ,” is that he said a bad word in class

What word ?” I asked, confused

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

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

She added quickly “ Well obviously I know that it could not be you guys .. I cant ever imagine you using a 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 regularly casts aspersions on the fellow drivers’ relations with the female members of their 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 say piously , 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 would use terrible words

Suddenly, a thought occurs to me

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

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

We talked about appropriate consequences and I called DH later that day

The thing is though , neither of us was upset

You see ,  R only learned to speak last year 

Well it is a new word “ I say

DH added “ and he used it 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 take them for  granted

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

And this-  having to watch 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 is just about lingual in English ) – we have decided to swear only in Bengali or Hindi

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

Wednesday, October 12, 2011

Autism Blogs Directory Interview

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



Tuesday, October 4, 2011

The Language of Love

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 name would smell as sweet”
Shakespeare

I disagree with the bard on this.

For there is a lot in a name

Because words mean things

A rose called by some other name – would, in fact, not be the same. 
For instance, if we started using the word “tomato”, instead of the word “rose”

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

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

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

For this reason,  I have simply loved the way in 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. The word “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 used to deride kiddos with special needs. Same with phrases like “rides the short bus”. Very hurtful when your precious baby, in fact, rides that bus )

It really is wonderful that the special needs community has come together to ask for respect in the language that is spoken to us.

But I think there are two other places that we need to be very careful with language.

The first is the  words we use to ourselves to talk of our children .

Even the language of our inner dialogue

For instance, I never use the word “normal” to describe kids who don’t have special needs. 

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

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

I will carefully skirt around using the word “normal”

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

And he is not.

He is 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 “–

I say it in my head- dis- abled 

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

Not good

Then I think about the word differently –abled

Well that  feels completely different

Its not about being PC.

Its about something infinitely  deeper

Its about self concept and identity

I think some of the  best gifts we can give our children are about how we make them feel about themselves

That we 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

Floortime Lite Mama

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