The second week of May

More glimpses of our life

The weekend

DH and I have found a way to find time together for just us .

This is Saturday when R has therapy for 4 hours .

The first 2 hours we usually cook. The second two hours depending on where R's social skills class is - we take a walk or we go out to lunch .

This weekend is one of our first sunny weekends  and dropping him off at the Sky zone ( which is giant set of trampolines ) DH head out for a gorgeous park.

See that line behind me

They are turtles

See this big turtle and little turtle make their way towards each other

I have heard that turtles are mean creatures and that turtle soup is delicious

But I do not think of those terrible things

And just imagine that the two turtles are mum and child , floortiming away

Sunday

Is also sunny .

 Its so rare to have the sun in Seattle that you are in an agony because you want to make sure that you can quickly arrange your chores so you can be outside

I am in such a frenzy - scared that the sun will go - that I am almost wishing it was a rainy day

We walk ( when R's therapist is here )

The best part of today is when we  get the hammock out

It feels like the end of something dark and gloomy (there is no doubt that last year has taken a heavy toll on us )

Monday - Friday

I usually try to write a little everyday .

But this week I did not and so it will all come out higgledy piggeldy

An Irish woman, a Chinese man

I meet an Irish woman in the park.

Such a delightful accent she has - I imagine what it would be like to met my friend Looking for Blue Sky or Jazzy Gal

To my shock I realize that I have been reading her blog in my voice - Indian/Bengali/Delhi/British.

This must be rectified

I tell her how much I love Maeve Binchy

( I wonder if Irish people this is like the Indian equivalent  curry , in the South I always got some comment around curry sometimes even the inexplicable "no offense, I don't like curry" ...  which of course always provokes me to think of wicked things to say like " well then what shall we talk about " ..  )

She tells me how sad this is that she ( Maeve Binchy )  is dead

I immediately realize that perhaps she did not understand my accent


I immediately realize that she probably does not understand what  I meant

But later I find that indeed she did understand and Maeve binchy is indeed dead at only 72 - how terrible


Accents are a real factor in conversations in this very cosmopolitan city

The other day a Chinese man and I got talking and we were talking about how his daughter has started to talk
As I said that R talked late as he is autistic - he beamed and said wonderful

Later I realized that he thought I was boasting about R being artistic

Play Therapy

I am too lazy to do real floortime

I just follow the lead in R's eccentric choices ( taking photos of road signs, making a chart of numbers, eating the same thing in the park everyday)

DH and I are trying hard on getting R to answer us

He is the master of ignoring a question

Motivation is powerful.

Q: how long does it take to teach R to take a photo with zoom
A: Just show him once

Q: how long does it take to answer a question about an inference " why are there branches on the ground"
A : Eternity!!! finally I give him the answer with gritten teeth " because there was a storm?"

Games

DH and I are trying to get him to play with us -

Nowadays he is blowing up his allowance at the Educational Store and different kinds of Bingo is really his thing

So we try to use this

But always this is like pulling teeth

Still we remind ourselves

That

1. He regularly plays with Miss Brittany
2. Its a whole different world than when we used to try and play when he was really little

For one thing he understands what we say ( this in itself is pretty impressive for us as words took so long to come  )

New interests

Right now R's new interests are in photography

He takes  selfies

Pics of the characters on the Wii

And sometimes he even takes pics of us

The weekend :The Hike Bike and Boat Sojourn

DH has signed us up for a VERY hectic weekend

We usually spend our weekend ensconced in sloth and here we are going to a day of endless activity

Oh but its so worth it

To see R being able to ride a bike effortlessly - just look at his face

 To snuggle with R in the 100 year old forest

to watch the gorgeous river and mountains

But most of all I am just amazed by some mothers I meet here

With such admiration, I see a woman who has chosen to adapt an severely handicapped child

What is even better is that she has done such a fabulous job of teaching her sign language that the child is so beautifully engaged and so clearly happy

There is a lot of misery  in this world - but thankfully there is also a lot of love
 

Days of my life , the last week of April

One more ordinary week of my life ( a little bit long - but guess what this is what I know I will really enjoy reading in April 2014 )

Wednesday

Today I told myself that I will not be lazy - I will do floortime .

But of course I forgot the first rule of floortime

Which is to observe

At first he was on the swing in the playground and I was trying to get him to think of substituting words in the "Farmer in the Dell " to "Papa in the house "..

OMG so much resistance

 I found myself  thinking in a victim-like way - how hard it is to get him to participate

But as I watched him - my mood shifted

I thought of all the things that were wrong with my approach

How I had forgotten that the first rule of playing with the child is to observe ?

I watched him sitting beneath the tree shredding a leaf

And I st next to him and shredded the leves with him

Soon we were making a pile of leave together

Then he wanted to play ringa ringa roses

Now HE WAS changing the words of the sonds and were doing ringa ringa roses dance to new songs

Such a silly thing to do with an 8 year old child but I felt that magic moment of connectedness

I have kept myself from a connection with all my assumptions of how things should be

Yes its very difficult to get R to play

But its not so difficult to connect

Later 2 little girls came and jeered at R wanting to swing in the little swing - and he just did not bother

And I though that this is the quintessestial moment that mothers blog about when you get the stab in the heart

But I did not feel anything

Except for the fact that those two little girls  were maybe mean kids , or they were maybe not meaning anything

But who cares -we  swung in the baby swing cheerfully and it was a lovely sunny evening in the park



Friday

Today at work I struggled with computers

After work - I went to Zumba.

 One of my friends from saved a spot - right in the front for me.

This was super prestigious but the flip side was that I could not shuffle at all .

I had to be super energetic and heave my bulk around - So exhausting

But it was all worth it when Derek ( guy who teaches the class - came down among us in the middle of the song ) - all of us huffed and puffed our portly selves .

DH and R also came to the club and DH took Rohan swimming

We went to the planetarium - AMAZING show - (for kids but I learned a a lot

I had forgotten all about light years and stars being born and dying and black holes )

R was a moaner  and complainer

DH yelled at him in the car for never wanting to try anything new

He weeped piteously and borrowed my Phone to play Nursery rhymes

1. Twinkle twinkle ( to show in fact that he WAS Interested in stars )

1. Ding dong bell .. to play the line "what a naughty boy was that " ( to show his contrition )

I intervened diplomatically y and a crisis was averted and we ended the night with Applebees -

where R stunned us by eating hot buffalo wings ( which are really chicken nuggets now that I think about it )

The weekend

Woke up late with DH and R  wrapped around me. This is my favorite way to wake up.


DH and I went for a walk when the therapist was doing ABA with Rohan but it started raining heavily so we only walked a mile ( so old people like )

Still pretty good as far as weekends go

I also was super organised for the week

(Though sometimes I wonder why am I always getting ready for something .
Then I do that thing ....Then its time to get ready for the next thing


We went to the Pro club that R loves- he did the usual ( jump etc ) get stuck on the slide then the walk of shame as all the kids wait impatiently as the instructor climbed to get him down

There is a large play area and R played with the blocks and made a giraffe and a camel ( the two things miss Gypis taught him )

This below is a giraffe

Here is a camel ( Alice ) with 5 humps

Oh Gypsi - I miss her so much

Sadie, Kristen, Tori - my Knoxville family !!!

I send her a FB message and we  have a love fest

I am so glad I always err on the side of being a sentimental person

R insists we buy him a cookie and eats it just like that - see that large butterfly cookie next to him )

Monday

(One of my friends told me that he hates the word "plump" .He also later told me the word "moist" gives him heebie jeebies

A few months later he confessed his phobia of raisins -

So of course now I sign every email with "Plump moist raisins")

I digress....

Guess why plumpness is on my mind

its cause I am not losing any weight

I finally broke down and bought a pair of Levis that are made for people who have large behinds

They are called "demi curve id ( translate junk in the trunk )

So I am eating SUPER healthy but not losing any weight

Why is it so hard to lose weight ?

I don't want to go hard core 17 day diet as its super hard to do and it requires the level of planning that I am just not prepared to do- DH and I did this once and it really worked

But I may have to do it anyways as this way (sort of )  is depressing

I watched a documentary on Netflix on why we are so fat ( answer Sedentary lifestyle and food industry, lack of sleep  and diet soda)


It was a rainy cold day ( cannot believe its almost may - so cold here still )

However there was a silver lining in this as well

Since it was so cold and miserable R ad I played and swung all by our selves s

We jump on the benches

Make up songs

( though in retrospect I hope that he will not sing the song of "this is the way mama dances round the pole " to  here we go round the mulberry bush )

The cold was totally worh it

We even manage our picnic

R has been mistreating his Wii Discs - so I have put them away so he will have to ask for them in a 1 by 1 basis

I have left a note for him ( later next week I find that he has colored on the note and also hunted his discs)

Tuesday - Thursday

Followed the same pattern

Sunny days - that I spend busy at work

Sunny evenings that we made good use of by going daily to the park

Thursday I prevent a girl from being bullied in the park and I feel so happy about it

Friday

I get to work from home in the afternoon  which I am super happy about

R has the day off ( admin day at school ) and is super happy to have me home

We  meet our neighbor

All I know about her before this is that she homeschools 3 kids and is from Kansas.

Based on this , I had instantly stereotyped her in my mind as a perfect and superior  person  like Gwenyth Paltrow. ( my reader friends you know me well and know that this is not a compliment )

In meeting her, she is really sweet and instantly won my affection by saying that she had bought some chocolate to welcome us but then had eaten it herself

R scratches his butt and since he has been weeping a little while ago he looks like an urchin  ( as his father had threatened him with not getting to sleep on the couch that night . This is his weekend treat and means a lot to him. Weekdays he must sleep in his bedroom . Weekends he sleeps on the couch watching us as we watch TV after dinner and drifting off to sleep on a couch with a blanket  ) -

Still she says how high functioning he seems ( I know this is a very bad word in the autism community - but I still like this term when its used for R )

We go to the park and R tried to engage me once again in his scripts

"Leo says " he prompts ( waiting for me to say "we got a mission")
I oblige

And then I floortime him " And mama says ....."

I look expectantly

And he replies " Mama says .. I love you "

And I am floored

Talking about R

An elderly mother of a special needs adult woman, told me how difficult it was living in a small community.

While she and her friends had children at the same time – their children kept growing and progressing – while her daughter stayed forever 10 years old

Then those peers had younger siblings who also grew up and passed her by.

Then those peers had children

You get the drift

I am thinking of this mother as I sit at a work event when friends and colleagues are talking about their children – the same age as R

Nobody is boasting but their world is so different than mine

Their World: Soccer, talking back, interest in the opposite sex

Our world: OT, PT, ST

I used to find these conversations uncomfortable.

I used to wonder how to participate

In the way unwillingly-single women feel around couples – (those that Bridget Jones calls the smug-marrieds.)Like their way to be is the right way to be.

But I always remembered this conversation with that elderly woman and I had sworn then that I would try to not be that way 

This was before I was the mother of an special needs child

And when I became one - I really understood what she meant - and how important it would be to not have these feelings

And so  I practiced my way out of it

They talked about their kids and I talked about mine

The more I talked, the easier it got

I talked about his oddness, his brilliance, his sweetness, his obsessions, his mama’s-boyness, his autisticness

I talked about our struggles with finding the right schools, his love of kiddie shows,

The 5 things he will eat and his passion for flashcards  

And guess what - no one seems bored.

There are no awkward silences

No looks of pity

I listen to their tales of lacrosse and they listen to my tales of Floortime

And we find things in common.

 I think it’s an important skill to have.

While the kinship we have with parents of special needs kiddos is so important, we will lose out on many important relationships if we keep ourselves away from the non-special needs world

Its not just about looking comfortable in conversations with the non-special needs world

But it also trickles down into how we feel about our life

 

Blessed or burdened


Grateful or resentful

"The mind is everything

 

What you think

 

You become "

 

Buddha

 

- - - - - - - - - - - - - - - This post has been written for the wonderful Hopeful Parents Website here