SPD Blog Carnival : The best things in Sensory are free

In Life before Autism we did not know many of the words, that are everyday for us now 

(You know, words like - Occupational therapy, Sensory Diet, Proprioceptive needs, Gravitational insecurity , SPD , SID etc etc )

And, of course,  like many in my sisterhood /brotherhood of special needs mamas and papas , we started reading voraciously thereafter

We were  dismayed by all the prices in the catalogs 

I wished  I had 20 thousand dollars to build a Sensory Playground for R

But then I realized that I already had one

The one made by Mother nature

The best catalog you ever saw with changes in all her Seasons

Summer for the carnival..... and some more-  just because

To watch how other bloggers do sensory therapy with their kids go to Hartley's very informative blog here

SOOC Saturday : Why I write and take pictures?

We are getting ready to move a heavy piece of furniture

Its my plan

I want all the moving-into cabin to be over

DH, however, wants to wait a couple of weeks when we are having some friends over for the weekend so he has some help moving the stuff

I tell him that I will be help enough

But I am not

And DH has to do the bulk of this without assistance

DH tells me exasperatedly " who will follow all your crazy plans when I am dead and gone "

"Dont ever say that "I tell him "I will have nothing without you"

But he has made me think

Does love just go when those that love you are gone ?

It makes me think of my friend who got divorced

She said  "Our love ended.. I dont think I ever was in love to start with"

But I dont agree

I think  she is re-writing her memory, to cope with her loss

Today's heartbreak does not take away yesterday's love

Most people talk about life as a journey

I dont like the analogy

It implies that when you have moved to a new place in your life  - the old place no longer exists

I think it does

I prefer to think of life as a collection of all I have been and all I have  felt

A collection I will always have

All existing together

Not bound by time

I think, one day a wrinkled rheumy-eyed me will read this

And remember that

Once there was a little family and  I was the heart of it

Once I was beloved

Once I was beautiful

And when the old K  read the words of the young K .. that young K will not feel so far away

And she  will be there again

At the beginning

This is why I write my story

This is why I take pictures

For more fun with SOOC Saturday visit Melody's lovely blog - Slurping life here

W/O July 9th of Cleaning cabins, meeting bugs and a rainbow

Dear reader -

I must post a "VERY boring " warning before you start to read - just writing because I like to chronicle my life-so I can relive it later

K

Weekend in the Cabin

On Saturday DH drops me to the cabin in the morning.Me , my army of Dyson and Clorox wipes, bleach and Green works and Mr Clean and Lysol

I look around at all the mess and relish the challenge

Me and my army battle the evil forces of spiders and bugs and dust

And  I enjoy myself tremendously .I am lusting for another Dyson - there really is nothing like it

I get such a sense of accomplishment from cleaning –

There is a Before K and there is a After K

And the After K is a representation of transformation that K has brought about

Buddhist monks say that cleaning is one of the most Zen tasks to do and its true

In the afternoon I have it almost all cleaned but I am dead tired – the cabin has not been in use for almost 1.5 years of its 2 year life and as its in the middle of woods its been taken over by the bugs and scary looking spiders

The rest of the family arrives in the afternoon and me and then we continue to  clean together
R is quite cranky without having the internet and also without any attention from me and we make sure that we will get the internet the next time we are here (No TV though)

And I also plan to play with him incessantly - I want him to have positive association with the cabin

He really blooms when we play with him ( especially the non -challenging Sensory diet kind of play )

And I make a note to bring sensory toys next time - hammock, mini trampoline, Exercise ball, Scooter etc

There is a lovely calm feeling to life in this cabin which is what I was looking for

More calm more contentment and more gratitude

Did you know that research shows that there is one single thing that differentiates happy people from sad people?

It is not money, health, good looks, security or youth ?

Its gratitude !

And I try to focus on it consciously

Monday

R is soooo happy to be home –

I realize that slowly over the past years our home is a sensory playground of sorts- swings, swimming pool, hammocks, sandpits, slides, trampolines abound here and R can provide himself a sensory diet of with ease
I must make sure that he can meet his sensory needs in the cabin as well

Slowly R is starting to have a few sentences as well

His therapist texts me in tears the other day.

R has said "G put on baby blanket" ( asking her to play peek a boo ) with him

Not just this, he is  showing an interest in languages –

The other day I wake up to R practicing Chinese

He has modifies his Baby Einstein DVD so it is in Chinese and he is pausing and repeating the words

My dad has astrology for a hobby and has predicted that R will be multilingual

Two years ago – when R had no words – I used to smile indulgently at this prediction that my Dad would make so confidently


Tuesday

R is really into shapes these days

While sitting on the potty – he takes a square of toilet paper and tells me to sing the Square song ( Susie Square has just four sides…)

Then he tilts it so it looks like a diamond and asks me to sing the Diamond song ( denny diamond is my name )
When I watch R thinking, It always reinforces my belief that autism does not mean MR

Its like the world has decided that you must be good at doing xyz and only then are you intelligent

And therefore that many autistic children have MR

Completely untrue as ASD kiddos may not understand what you say when you want them to do x, y or z,

Further they may not have the motivation to show you

Even if those two things are passed ie they understand and have the motivation but still are not able to do it - even that does not mean cognitive chanllenges

For they may do other things very well - not knowing X YZ does not mean they do not know A B & C

Also when I hear other people say that R is so bright he is like an Einstein - I dont buy that either ( though its lovely to hear )
.
R is an ordinarily clever child

Yes even at 5 he knows many facts that a neurotypical child would not but that is because its his focus.

He does not spend time on social interaction

R's ABA therapist tells me in the evening that he reached over where she was doing the tallies

And he scored his sheet himself  and ( circles all the I's himself , I for independant , to show that he did these things independantly )

We are  seeing a lot of progress lately and I am really starting to think about something unusual

That a version of homeschool may be the best bet for him

By that,  I dont mean only DH and I teaching -

I mean a combination of tutors and therapists instead of school

Wednesday

MIL and SIL leave for India - they have been here 3 months and are very very weepy to be leaving us and R

When R sees the packed bags he is very anxious

But he later is very relaxed when he realizes that they are going and its not he -himself who is moving out or something

The coming and goings of his extended family from India is something he is very used to and this is nornal

R did not sleep much last night and he is cranky - bursting into tears that I will not let Tuck come inside the swimming pool - and giggly in the evening and goes to sleep in the night for a solid 12 hours !

Thursday

I start back on THE FIRM ( exercise videos )

I really enjoy myself  -but its soooooo exhausting - I am simply wiped out which makes me realise all the more how much  I need to exercise

R is very charming  in the evening - He has slept 12 hours the past night and is just in full bloom

DH and I always say that the best and most effective therapy for R is sleep

In the Floortime session in the evening he is very flexible, with it  and just very interested in everything

I see him with his  DVD - trying to pause on an unfamiliar word and try to say it out properly and phonetically

He spells out "Brandissimo" ( the name of the company ) each letter separate and uttered phonetically and then says it out together

Friday

I meet DH and R at the mall

We always shop together for household stuff - this is one of the things we love to do together

I really think find it quite romantic to select the mundane things that make up the physical structure of our home

Saturday and Sunday

DH chops all meat and veggies and I cook and we are all done by 1 -

We drive off to the cabin

R is lackadaisical about the cabin until  we discover the community Pool

He has a BLAST in the pool and now is really warming up to the cabin -

he is super tired  from the pool and falls asleep right after bath and dinner

DH and I have tomato basil soup( all fm DH's garden and VERY flavorful ) - I really could not love summer more

On Sunday

 I have my first Moose Munch ever - its an expereince to remember

Though the day will end on a grumpy note - with DH and I - overtired and moving a big piece of furniture around  what will always remain with me is the afternoon

In the afternoon - it rains heavily -  I make a pot of Starbucks and we sit on the porch

And a rainbow comes out for our viewing pleasure

It seems to me that there is no artist like the one above

These beautiful woods

This lovely home

This content life

SOOC Saturday : To be with the ones we love

Back from a work trip

And R jubilant and thrilled  follows me everywhere

Dragging his DVD, toy or book to the kitchen, living room, outside or wherever else I may be

Happy just to be in the same atmosphere

(I know the feeling .. sometimes I put my noise-free headphones on and read a book while DH watches TV just to be in the same atmosphere

Is it just me and mine that think about our atmosphere, our presence , our auras?

Not needing to speak or touch

Just happy to be with  )

R's ability to shine a 1000 watt spotlight on his mother reminds me of something I read once

To the world you maybe one person ....but to one person you may be the world

For more fun with SOOC Saturday visit lovely Melody's blog Slurping life here

The words of R

R’s VB therapist has asked that I make a list of all the words he has to see how to modify his therapy

She asked me this last year as well

How easy it was last year!

Easy and painful to see his handful of words

• Sprite

• Chips

• Sheep Mother

• Sheep Father

• Swing

• Numbers

• Alphabet

And the ubiquitous more and all done

That was it !

As I type in R’s words today a year later, I see the word tally slowly increase

I try to picture his day in my head to jog my memory for all the words he says when he wakes up , when we play, at meal times etc

Yes, he is autistic

Yes, he has severe Apraxia

But now he also has more than one thousand words

This from a child who not too long ago – we thought would never speak

Some days, I feel I am in the presence of a miracle unfolding

I picture our bed time routine to finish up the document

And I end appropriately with R’s simple bedtime prayer “Fank you Dod”

Yes, thank you god

Thank you so very much

Priceless

Months looking for the right vacation home - 6

Weekends looking at shortlisted cabins- 16

Number of cabins almost bought -2

Standing, deeply grateful,  on the patio of your very own cabin for the first time

Well that's Priceless

W/O June 26 to July 6 - A trip, A barbecue, sleep troubles and growth and a long relaxing weekend

Odds and ends from the past two weeks - sort of boring

Return from Utah

I return from Utah

Park city is one of the most beautiful places I have been to

Because I grew up in the land of the Himalayas – the bar has been set unusually high

Example : here is where DH and I went once on a project on Himalayan medicinal herbs trade – its called Munsiyari ( the name means “Place of snow “)and was on the ancient salt route to Tibet

Photo from Trek Earth

It is very very remote - completely unspoiled by tourists 14 years ago when we were there –(However when I looked it up on Wikipedia today – it is described as a “favorite “ spot for hikers )

I have had a good time but 3 days away from home is 2 days too many –

 I have gone on a Bloggers conference for work no less and have a chance to meet some lovely bloggers

Really liked the author of “Ordinary Courage “

This time I have made videos of me talking to R and emailing them to DH –(  as my Iphone has a video camera ) –
DH reports that he watches these lackadaisically ( though when I return home,  he finds them on my phone and watches them with great attention )

When I return home R is very very clingy

DH says R has been waking up at 1 every night “mewling “ for "mummy mother"and pleading to go to the airport .

As I did not write a visual schedule-( but just told him that I was going back and will be back on Sunday ) guilt washes over me in great waves

Sleeping Separately

Is going okay

R goes to sleep in his bed alright but we find him in our bed every am

This is fine – DH and I don’t make a big deal about most things – we say no to only two things – bad manners and things that harm him.
Especially we do not say No to the things that appear to us to be very fundamental to his emotional well-being!
However , the one thing I am determined about is that he go to bed in his own bed

Sleeping in general is not going the best – in spite of the Melatonin

I think R physically needs our presence to not wake up – I think its literally a fundamental sensory need and I am thinking of buying a weighted blanket to see if it will help him – none of us are sleeping very well as a result of R not sleeping very well

R is taking time to fall asleep as well – I usually hum “Jingle bells” and I know R is not sleepy when he says each “hey” on cue

Pretend play

Is simply going great –

I saw the first thing that R did which was not mechanical or a repeat of a theme

He got Tuck to take a ride on Gordon !

I am so proud!

I can see other neurons firing

I ask if he wants to go see Fireworks for America’s Happy Birthday and he quickly says “Fy- wuk ess” ( fireworks yes )

We go to watch the Fireworks and R calls them “Rudolph the red nose reindeer “. I am suddenly struck by how it does look like Santa’s chariot in the sky

I also find how he has hidden Linny and the number 4 in our AC vent – ( no wonder its so hot in our bedroom ) I show them to him thinking that maybe he forgot that they were there

But he looks startled and later I find him returning Linny to his place in the vent

I also see him comparing Tuck and Baby Tad ( which when I REALLY look at them are remarkably alike – in personality and appearance )

Truly R is an infinitely interesting child

Fine motor, Sense of Self

Monday is a holiday so I go with R to his OT session and record him .

I am struck by how well he follows directions when he is in a one on one session

I also figure out why he has picked out his Baby Newton DVD and is watching it again and again – its because he is learning the square and triangle and how to make them as this is what his OT does

In effect he is doing homework- trying to figure out this whole drawing thing

Really I have soo much respect for R.

So he learns to make circles and then makes this ( evidently a self potrait as when I ask him who is it - he replies"R")

Another thing that is developing is a sense of self

While I am changing I hear him knocking( scratching )  on the door.

When I ask him - "who is it .. is it R "

He replies "R "

This is so wonderful to hear from a child that did not know what his name was nor what a name meant just 2 years ago

And  now not only does he know it , he also makes his picture, replies with his name and asks to wear the "R shirt " ( a shirt with his photo on it )

Every day feels like it comes with a gift -

Thank you god

He is learning squares and triangles so he can make this with help

Again I am reminded of how important it is to let your child learn in the way they need to learn, rather than imposing on them how they should learn .

I watch the Temple Grandin Movie ( how I love her!! – what a fab job Claire Dane has done !!!)

The Baby newton DVD is not unlike Dr Grandin’s hug machine ( which her mother does NOT want her to take to college as its “everything they have been trying to get away from “)

I am such a Flootime mum - In the scene where they show Temple’s mother showing a 3 year old Temple a flashcard while Temple looks away at the chandelier –

I want to jump up and shout – CANT YOU SEE WHAT SHE IS LOOKING AT – TEACH HER THE WORD CHANDELIER… THEN BUY A TOY CHANDELIER AND DO A PRETEND SCENE AROUND IT

I feel so grateful for Dr Greenspan, Dr Grandin and all the professionals who teach us mothers how to help our kiddos

And so very sorry for the kiddos whose parents cannot or will not help them

Weekend

The weekend is LOVELY - DH's cousin who is a Professor in Bangalore comes up for the weekend

She is very nice and we have a great time with her

We show off our beloved Southern town  and we have a picnic in the river

I am very unwiling to go but DH forces us all and I am very grateful that he does as I have to shaken out of my comfort zone from time to time

DH makes a lovely BBQ - he truly is an artist when it comes to food and drink - his margaritas are poetry - His grilled chicken- a perfect orchestration of spices and smoke

The lovely long weekend comes to a close with me and R in the swimming pool - we sit on our dolphin floatie - he sits on my lap facing me nose to nose .. looking into my eyes

And I tell him how grateful I am for the love he gives me.

Life is good

SOOC Saturday :Courage

I am not the sort of person who likes to hang by a wire between two mountains

But here I am

On my way in the sky to the top of a mountain in Utah.

On my way up so I can come down hanging by a wire!

Petrified but determined

Look at me

I may have fear

But I am courage

Somedays it feel that what  stops me, is my own fear

And as I zip down  on this rope over a valley -so breathtakingly beautiful that you say a silent prayer to God's art.

As I zip down the rope at 45 miles an hour, so full of exhilaration, really it feels like  I am flying

I start to wonder about all the other things, feelings and experiences that I could have if I let go of fear...

What would you do if you were mastered  fear?

Courage is doing what you're afraid to do. There can be no courage unless you're scared.”

                                                                                                         Edward Vernon
For more fun with Straight out of Camera Saturday visit Melody's lovely blog and all the wonderful bloggers who share a slice of their life  here