Monday, September 27, 2010

Listen to Angels



Its 3 years ago - we are in a psychologist's office

We are still wondering what it is that R has

How can it be autism when we feel so connected to our son ?

( Its still the times when we dont know much about autism and think it means an inability to relate..now we know better ) 

He likes to snuggle .. he cannot sleep apart from us " we say

"He loves to nurse still!" I say

"He cries when we leave him with a babysitter " DH adds helpfully

We are so connected , we are thinking

But somehow its hard to show this connectedness, his presence in our relationship, his intelligence, his abilities in her office

"Can you show me any example of an interaction?" the psychologist asks and waits patiently

She is terribly kind and patient but still I feel helpless as I cannot show her how he really is

"We sing songs"? I add brightly

"Can you show me ?" she asks

R starts to smile as I break into the familiar notes " The wheels on the bus"-

And on cue, he holds my hands open and shut, goes bumpity bump , holds my hand to make the wiper actions of swish swish swish

And suddenly we are connected for all the world to see

Later that year we spend some time with a Floortime Psychologist

Her advice – Fill his day with Sing Swim and Swing

Make songs about everything – his routine, any activities

In those early days where we are starting to get familiar with a complete new vocabulary

All feels strange and unfamiliar

Though I am surrounded by  all the things I do not know how to do … singing is one  thing I am actually good at –

And so I sing

Oh how I sing

Somehow singing is  a short cut to  R .

Tolstoy said that  music is  the short hand of emotion. And it is this for us

Somehow with R, where we can  not go with words, we go with song

So we introduce  R to the world of made-up songs

Songs about letters, numbers , body parts, routines

You name it .. we sing it

And R, in turn introduces me to the world of classical music

Enthralled by the background scores of Little Einsteins – he watches the credits of the show intently

And then googles videos of  Moonlight Sonata, of Mozart , Nutracker Suite

Slowly we get into his music

Today it amazes me that there was a time in life when I had never heard the Nutcracker Ballet

Were it not for R – would I have gone my entire life without Vivaldi ?

As I write this post for my wonderful friend Dr Boucher's blog carnival , I realize how much song is woven into the tapestry of our lives

Just a moment ago R walks down the with three Santa dolls

Santa Claus is coming to town – he sings melodiously

I pick him up and twirl with him around the room while singing

K : We …. ( pause)

R .." wish u a merry kismis "

He picks up the second doll and says "Mrs Claus is coming to town"

And then we pick up the tiniest doll and sing together "Baby Claus is coming to town"

A scene from a movie  flashes into my head

In the movie a little aboriginal child being separated from the female protagonist .. wipes her tears and tells her not to worry.

They will never be lost to each other, 

"I sing you to me .. Mrs Boss" he comforts  her

And sometimes I think that is what we  did

We sung our son to us

That is what music did in our lives 

This post was writted for Dr  Boucher's Blog Carnival in September called " Listen to Angels"

Sunday, September 26, 2010

Tranquility


Its been along and weary week and I have decided to have a guilt-free 2 days on the weekend

Some of my friends say they want an autism-free vacation

Autism –free vacations in my mind  are impossible

For me , I try to take vacation from my role as therapist mom and guilty mom

We have a lovely lazy day

DH and I watch movies

R coils around us – like a cat

Instructs me to do things that he his watching on the DVD

Flashlight games

Sing songs but instead of pointing use the flashlight to light the part

So sing "Toe, knee chest nut" but instead of touching – shine your flashlight on the toe on the knee

Create shadows out of numbers and say them out

Word games

Playing little word games ( it's a simple game we played since when he was 3 when I used to use any way to get into turn taking .. the rule is that you can change only one letter to make a different word )

R :CHIPS
Me; SHIP
R :HIPS



And then not waiting for me to take my turn PIES

So the lazy day goes on

I think I see one car the whole day

I eye the woods longingly on Saturday evening

I am perishing to take a long walk..

I would take R but he will want to be carried in 10 minutes ( or less )

As R has been remarkably anxious about me leaving lately for anywhere but office – I don't really dare leave

I am a prisoner I whine reproachfully

DH smiles and tells me he will come with me so between us we can carry R when he asks to be carried

And so we walk together the three of us

This is one of my iconic moments – I tell DH smugly – its like we are a family from an advertisement

But its so much more -

It occurs to me how much I love these two and how much I love the three of  us

There are people who are good separately but then when you put they don't work together quite as well

We are better together

We play the 1..2…..3 game – where we swing R between us and raise him high  on 3 .

Much squeals of joy

And no, he does not ask to be carries
We read out the silly names of all the other cabins on the trail

A coy " Allison's dream" written with a flourish next to a box of fake flowers

To R , I am sure names lile "Kiss the moon" are quite perplexing and I see the wheels of his mind turning

We do a leaf color hunt ( oh how I love Fall )

An obliging spider has created a giant web of such fineness that it looks like the spider is walking in air so R can sing Itsy bitsy spider

There is such peace in these woods

So different from the hurry …do more…. do faster…  which is the rythm of my everyday

It occurs to me that there has to be a better way of doing things

Like the saying goes

"Nature is never in a hurry and yet everything gets done "

Monday, September 20, 2010

Bits of September that I want to remember

My birthday

I am having a lovely day – though I started grumpy

R has been unusually( unusual even for him ) clingy lately – DH has been calling him “psycho-son”

Maybe its school starting

But he clings to me a lot and weeps piteously if he cannot find me

DH and I were watching a movie late in the night and then I chatted with my mum dad and sister at midnight ( as they must wish me a very happy birthday  at midnight )

R gets in to our bed and keeps my awake by a strangle hold around my neck

Not just this, he wakes me up at the crack of dawn and then insists with much tears and weeping that I, and only I must come down with him to turn on his DVD and hunt for the number 5 –

 DH – prince among men - offers to come down with him - but that will not do

So I wake up grumbling

And then just as quickly remember that even though I have not slept and I am very tired - its because my parents and sister want to wish me at midnite and becasue I am one of my son's favorite people

And my mood changes as I realize how much I have to be grateful for

DH grills what he calls namby-pamby sausages – ingredients like sundried tomato and unpronounceable cheese etc – but this is the sort of thing I love ( while his fancy runs to things with pork and words like cajun etc ) and we finish up a lovely lunch with a plate of oranges


Then my parents and sister call . They are celebrating my birthday and have got a chocolate cake with icing and “Happy birthday K” written on it and with much fuss cut it over video camera

DH has got a lovely watch for me – it’s a scuba diver watch ( this is a sort of joke as well – as I am wont to never take my watch off and am always ruining them by swimming in the pool with them ) and I love it

We were planning to go to the country fair but I am so happy here in the woods. The beautiful Autumn sun spilling all over the front porch hat it just seems the best place to be and we dont go

All in all I have a lovely time

DH ices cupcakes - R favorite thing in the world right now is birthday party ( which he says with a strong southern accent ) and so we have a great time

It seems quite appropriate in fact that when the day ends the last remaining cupcake has this written on it



Friends

We have had some of our close friends come by this month  and spend weekends with us and this has been lovely

Much wine/liqueurs have been drunk , lots of chatting has happened and we have slept very little

Still its been a lovely month

We have spend a lot of time in this lovely chair hammock

Highly recommend getting one



Building Blocks

R has suddenly started showing this most amazing aspect of pretend play  - thanks to his Pretend play therapist

Its easy to imagine a doll is a person ( example female doll can become mummy doll ) - what his therapist calls representational pretend play

To imagine blocks are things is far more sophisticated .. so his teacher is teaching him to pretend for instance that the different blocks are different musical instruments

To try and use the blocks to create something different is a higher order skill still

Here is a camel – made by R - complete with hump

It seems to me like he has captured the very essence of a camel

I see it clearly – the stubbornness , the slowness and the inscrutable nature of this desert creature in the lines of this creature( I know camels well having lived for 2 years in the Rajasthan desert and I tell you that this is a likeness)




Playing

I have not had many good Floortime days this week

I did try to get some play going with the Thomas sets on our patio


Sometimes I think I have more fun with this even than R does

I spend a lot of time in my imagination when playing and have a lovely time

I am surprised to find another grown up person who also does this

This discovery comes from the books I am reading these days.

Currently I am finishing up “Sunlight on the Lawn ” by Beverly Nichols - an author who lived and wrote mostly in the 1930’s and 1940’s .

I feel such a kinship with this man -dead now for several decades

He describes a phenomenon called “Shrinking yourself  “

Shrinking means that you imagine yourself to be very very tiny

Yes that’s it

Imagine yourself to be very very tiny in wherever you are right now ..right now I can easily imagine myself tiny and swinging from the lightknob of my table lamp

I know it sounds very boring

But try it sometime and you will see what I and this author so delight in

Here is what Mr Nichols says in his book written in the 1950’s when he goes to see a dollhouse

Certainly on this occasion confronted by this wonderful dollhouse.. I was glad to be a shrinker .. because in a very few moments I had shrunk enough to step inside and set foot in the hall

In terms of shrinking in his garden he describes as “there are drawbacks to being a shrinker in the garden of course .. there is always the danger of being stunned by a dewdrop and in wet weather one is apt to sink too deeply into the moss”

I suppose its growing up reading all this fiction of the fairies .. look at tiny people who live in the tree



When you are playing with a train set and you shrink yourself like I do – you experience the trains in quite a different fashion .

There I am right there talking to the stationmaster after I have stepped out of the train

Then I will go to my little cottage and make dinner

I and R and Dh will eat soup and bread on a liitle table- that is actually a little round stone

And R will go to sleep using a large leaf as a blanket on a bed that is made from two feathers that a peahen abandoned and DH ferreted away for R

And this entire cottage will be in the hollow of a tree !

So you can expereince Thomas the train in quite a different way

This here is the wonder of writing and reading for me

The sense of connectedness with another – unbarred by space or time – another who lived in the world of imagination like I do


Declarative language

Has begun in earnest

This is really not the easy thing for auties at all

Most auties learn language through manding ( Verbal behavior term for asking for things – this is an essential first step because this is how they understand why they should communicating – because by communicating their needs they learn to want to communicate )

But most language is declarative - we make an observation and share it with another

We lament on a political figure and another shares our feeling or disagrees.

This is the rythm of conversation

But Auties frequently never get there

R - I am happy to tell you is starting

So he will be watching a movie and suddenly observe -" the man is digging" and look at me  and I will jump with delight - "yes he is digging a hole"

Or  I will be peeling a banana and he wil lobserve
"mama peel banana"
and I will throw back the ball in an attempt to a conversational circle of communication "would you like to peel the banana"holding it out to him ( which he will do creating a good deal of mess )

This is all simply amazing and something I would not have thought possible last year

Thank you god

School

Seems to be going oka y so far

His daily reports all seem very good and say "wonderful" for his behavior that day

he also did his first homework the other day

Finding four objects that start with the letter M



He needed a lot of help

How does a child do homework who does not really understand the question ?

Finding objects that start with the letter M is not the problem

Understanding that - that is what he is supposed to do - is

So for instance if I had modeled the Q & A

So I would have said "Find 5 objects starting with A  "and  then I had found the 5 objects and shown him

And THEN asked him to do the same for the letter M - I am sure he would have been able to do it easily

I am coming to realise what a huge role language has in a language based education system

What a portentous fact that is !

Still  I will trust that R will overcome this ..just as he has overcome so much before

Friday, September 10, 2010

Different, not less

Now that R is talking more and more- I am discovering how interesting his way of thinking is

He often makes me do a double take

He was stroking my hair the other day and he touched the ear ring I wear usually - a wedding present from DH and said ...

"Snowflake"

Can you see it ?

I know I will forever feel like I am wearing snow in my ears

When  our friend was lying down on a towel sunbathing- R looked at her and said

"Sleeping Bag "

Can you see it ?


He picked my red lined socks out of the laundry and said "Santa Claus Socks " --

Well they are red and white

R insisted on wearing them and for the first time in his life slepts with socks on

Thank you Santa


He has been asking to play tennis for a while .

DH ( who is the quintessesntial sportsman ) has brought him a set of tennis balls and rackets

We go to play tennis with some of our friends and R has a great time

He savors all the elements of the game - is able to hit the ball a few times-  but this is only a small part of the joy he gets from the game

Through his eyes-  simple game of  tennis is a multisensory experience

Have you ever noticed the perfect symmetry of the clean lines of a tennis court?

 Do you know how many perfect shapes are hidden in a tennis raquet ?

Well I do

I do  now

This new dimension to tennis is not all I discover .

I also see how wonderful DH is  as he - a true sportsman - takes a not-at-all sporty child completely in his stride.

Brings whatever new game R shows interest in

And is completely charmed when R enjoys it in his way without worrying about the appropriateness of the play

There are a lot of statistics on the toll that special needs kiddos can take on marriage

But sometimes it can make your marriage stronger



The eyes of R make everything more interesting

An Icecream Cone becaomes a Birthday Hat

A set of blocks becomes a Giraffe

And so on

I just so love his way of thinking

Another thing I love about him ,  is the way he loves

How can I describe the joy of being the object of R's affection?

Here is me trying to exercise but as soon as R sees me on the exercise ball  he takes it as a chance for a cuddle

Can you see me?

Look carefully

Beneath the DVD player

There is a child

Beneath the child

Above the exercise ball

Is a mother



Every spare minute that he is not in school or in therapy - R tries to make sure he is with me

Here I am sorting out the linen cupboard and right next to me in this sideways picture is R



The more I use my own eyes to look at my life  and not at what the statistics say

The more I feel the the words of Dr Grandin describe my son

Different

Not less

Sunday, September 5, 2010

On Hopeful Parents : Loving mother, Therapist mother

I am over at  Hopeful parents  here today talking about something I know many of us struggle with -
Our roles as parent mum and therapist mom
Spoiler alert : I have a solution to this tussle...................NOT :-)
If you have a minute to spare-  do go over to this lovely site

Friday, September 3, 2010

Portrait of a Floortime evening


There are two ways to do Floortime

The well known one is the the 20 – 30 minute session where the parent/therapist begins by observing the child and then follows the child's lead in order to create circles of communication and take the child up the developemental ladder

However there is another way

This is Floortime Philosophy as a lifestyle – this is the one that is practical for our family and the one we do most of the time !

Floortime as a lifestyle

 So here goes an evening which elucidates how Floortime can be a lifestyle

Its 4.30 in the evening  this Wednesday and I walk in after a day in the office - through the living room and coo at DH
R hears my voice and walks downstairs towards me

K : BIG smile ( Affect is Key in Floortime )
R: Smile back ( circle 1)
K : holding arms out - opening mouth as if to speak but not saying anything
R: My love!! ( this is a endearment which I usually say but because I paused - R prompts me to say( Circle 2)  and an example of a Floortime strategy – Pausing with a look of expectation
K : kneels on floor
R: steps inside hug and puts his arms around K ( circle 3)
K – what you want to do ?
R – Go upstairs ( circle 3 )
R - mama sheeping ( ie I should go to sleep )
I go lie down on the bed ( circle 4 )
K – pretends to snore loudly
R – giggles and comments "Mama Snoring" ( circle 5 ) – an example of a child with very limited speech actually using declarative language which is very difficult for kids on the spectrum ... and is also a critical skill

This goes on for a while then
R shouts – "Wake up Mama "
K Jumps out of bed ( circle 10 )

And so the circles go back and forth continuously ( I am not writing more of these down as it would be too horribly boring to read )

We are able to incorporate pretend play

R brings all the trains ( Thomas the engine series ) to the bed and they go to sleep turn by turn and make snoring noises
Example, R puts Gordon to sleep .. and looks at me expectantly
I make snoring noises for Gordon
Then R wants to do the same for Henry
So he throws Gordon on the floor

I try several times to deepen the plot- expand the imaginative story line and try to create a logical idea and work on Level 6 skills

So I pretending that Gordon is hurt with a boo boo and needs a bandaid

But to no avail

This is classic Level 5 not being able to go to Level 6

So while pretend play ( symbolic thinking ) is present – its very primitive and there is not a long and logical set of connected ideas

If he had reached Level 6 thinking – hurt Gordon could have gone to the hospital and got a bandage and henry could have got him a get well soon card

Classic Floortime

Later when R is finished with his ABA therapist and is ready for dinner ( where I hand feed him a lot of veggies ) I have a chance for some Classic Floortime

I observe the scene he is watching which is Blues Clues episode with a breakfast and a song

I modify the song on the DVD to what we are doing

So when they are warbling "Don't forget about breakfast "

I sing "Don't forget about dinner "

And so we go on The DVD , R and me

R coos apraxically "put it in a bowla " ( in a happy coincidence we are eating dinner from a bowl and so is the character Steve in the show )

So we go on throughout the show – writing in a notebook ( when Steve brings out his "handy dandy notebook")

Modifying whatever they are doing to our purposes

R has a real sparkle in his eye

Everytime I start a session with observation of what he is interested in – I am reminded of how using the child's interests to start – is crucial for entering their world and then pulling him to a shared world

Floortime as a lifestyle

Bath and bed time is a time to switch back to general Floortime Style

I ask – what we want to start with , let R decide the routine , give options on soap ,, what towel , clothes to choose right up until bedtime

As you can see we are in a continuous flow of back and forth interaction easily slipping between the two types of Floortime – "Classic Floortime" and then "Floortime Lifestyle"

We simultaneously work on more than one developmental level and get very good Self regulation, engagement , Back and forth interaction , Symbolic thinking etc

We are constantly harnessing R' intent

We try to go a little bit ahead of where we are – we attempt Level 6 ( without success but its necessary to keep trying )

And we do all this for free and with a lot of fun

I hope I am not giving you the impression of being some sort of super mom –

This is an example of a real evening – but I have been conscious and deliberate or Floortime and Floortime Goals, in order to write this post and in fact I am struck by how much more I can and should do .

Many evenings I am slacker mom –

Today for instance – as soon as I arrived home – R wanted to go to Target – then the rest of the evening whittled away with nothing much achieved

But tomorrow is another day !

Floortime Lite Mama

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