December & Christmas things

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

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

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

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

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

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

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.