Wednesday, August 17, 2011

The Last days of Summer

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


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.


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 !!!


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


Deb said...

This is so wonderful and poignant. I had to write and thank YOU for writing. I discovered your blog linked off another blog recently and it has meant so much to me. I too try to do Floortime, when I can. I love your approach to life and autism...and your honesty and transparency. Thank you so much!!

Lyndsey said...

I too read Strange Son, and that line about how he had been listening the whole time had me in tears--actually, that whole section of them realizing what he was capable of kept me crying.
Love your blog posts, as always. :)

Yuji said...

I love your posts as they are always so beautiful and thought provoking. I think it is wise to be aware that the present is fragile, but that doesn't necessarily mean that the future will be worse. Time will bring many changes, our kids will not be kids forever, but seeing their growth along the way will (hopefully) be fulfilling.

Bright Side of Life said...

Love this. :)

Tanya Savko said...

How sweet about the 27 books! I love that my boys are readers too, since it's something that I cherish.

Anonymous said...

I wanted to say thank you for writing as well. I find myself coming to your blog often when I am in need of comfort in this crazy life with autism. My son is only four and recently diagnosed. I'm thankful you share your views and experiences with the rest of us :).

BabyWeightMyFatAss said...

I love your posts. You've found the good behind what you are going through as a family and I hope to be there one day...

Floortime Lite Mama said...

how lovely your comments are

Allison said...

I so look forward to your posts, because they are beautiful and they always give me inspiration. You have the ability to let your son just *be* - and that is such a gift to him. You are right that these moments are fleeting, but you are experiencing them in the right way. Thank you so much for sharing.

Dr Asit Kumar Bhattacharyya said...

ur blog is always wellwritten.all the photo r good, I liked the children jumping on that bed in the log cabin,These r joys in life for the onlookers like me,best wishes,luv u,luv ur DH, Luv my darling Rohan

Kim Wombles said...

Gorgeous post, as always. Love the piles of books!

Mr. Daddy said...

"What we are is God's gift to us. What we become is our gift to God." ~Eleanor Powell

K I think that what you are becoming is a pleasing thing to God.:o)

blessings to you and yours. Your DH sounds like a wise man.:o)

Anonymous said...

I loved so much of this, K! I love how you turn a negative thought around to see the positive in it. How beautiful that you recognized his invitation to play. :) I especially loved that part because I have promised myself that I will always be available for Daniel. Sometimes that is just so hard and I completely understand the "can I just have 30 minutes!" feeling! <3

Bonsky said...

Loved the post and can so relate. I dread the start of school and all the pressure and issues it brings. I get a little lump in my throat when each of my girls turn to wave to me before getting on the bus -- doesn't matter how old they get. I hear so many people say how they can't wait for school to start -- get their kids "out of their hair." I simply don't understand this thinking as soon enough they will be all grown and "out of their hair." After all, isn't that what we work towards -- making them independent, productive and happy? But, if my experience is any indication, the look of love has never left my girl's eyes (okay maybe once or twice but never for more than an hour or two). Don't worry, you will always be beloved by R. After all with all the love that exists in your home, how could you not be?

danette said...

I love to read your updates, and the wisdom you share always seems to brighten my spirit :). The number books made me smile, reminds me of my boys. I can relate to that feeling of wanting just a few minutes to chill, but what a sweet way to turn that around and respond to his invitation. Hope the transition to a new school year goes well for R.

Lizbeth said...

Not only do I stick with you to the end I'm happy to do so. I love how your posts always make me smile.

I'm right there with you on school starting. I hope it goes well for you!!!

Rachel said...

Thank you for writing. Reading your posts always seems like a bit of a gift of yourself. And I am so grateful to call you my friend... and I would be GLAD if you would take me to Starbucks! :)

robin said...

I love seeing life and your family through your eyes! You're a great mom! :)

Devbrat said...

Very well written K!
Today when I came out of my house to go to office my wife and my 6 yr old daughter came to see me off at the door. It happens every day. But today.. there was something different.... something special.. I carried their image of standing together at the door and blowing kisses at me.. the image stayed with me.. It felt good… but I did not know why...

I came to office and in my free time I read your blog... and guess what I found.. I now know the reason why I felt so good today looking at them...

"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"

So True!!!! I could relate to this immediately... Wonderful thought!
Keep it up K!!

jazzygal said...

Lovely post and I so get you about letting them have some 'carefree time'. Our children have to work so much harder than there peers don't they? They deserve a break now and then!

Absolutely LOVE the 'listening' quote! It is so very true...they ARE absorbing more than we realise.

xx jazzy

Jackie said...

It great that he loves books. Books and reading is such a great way to open up the world of imagination and learning.

AutismWonderland said...

LOVED this! Looks like you all had a great summer.

I love how you catch yourself "letting him be" and "accept the invitation."

And - who knew there was a coke museum? LOL and love the disclaimer on how he doesn't drink them.

But as a new school year begins, I am feeling nervous too. And it's nice to know we're not alone.

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