Tuesday, December 8, 2009

To take joy in our children

Little C who is 4 years old  is styling my hair  with her play set is asking me a question

What color do you want your hair to be? You can choose pink or purple? 

Are those my only two options? I ask

Yes ! she nods solemnly...

 "You should choose purple" she further  advises - after taking my skin color and clothes into account!

"Will you come visit me to touch up my hair? I ask

"I can't "she answers "I dont know how to drive quite yet "

At this, we all burst into laughter

We are at a friends house . Her  mom - is expecting a second child in January

Last year she and her husband were considering having another child - She is older ( early 40's though she looks very young )

She told us that she almost decided not to - for fear that something could go wrong

It  is true

Our life is very good indeed .

Saturday  was a snow day.

We dont get a lot of snow here in TN. But we deeply enjoy what we do get

Snow is always pretty

But when you see it through R's eyes-  snow is  magic .

Our ordinary neighborhood is a land of enchantment

Everybody is inside their houses

The road is empty except for a dancing R

He points to the trampoline

The trampoline is covered in snow.

I patiently explain we can not

R persists

I tell him to use his words and he says  "Puck bee upp"( pick me up )

Unable to resist the spoken word - I pick him up and put him in the trampoline

"Come Iside"( come inside) he beckons to me and though I have pulled my back this morning - I am unable to resist

And so we do

We jump on the trampoline, slipping and sliding

But somehow not falling

One of the things,  special needs mommies struggle most with,  is the thoughts around what might have been.

They imagine their child without the disability and with the struggles and it can break your heart.
Further, its easy to be around children like C - hear their adorable prattle - and to be filled with wistfulness

But there is a big  problem with that

That problem is that not only does it stop you from enjoying other children , but worse,  it blinds you to the beauty of the child you do have

As I am picking up R's babies--- doing my put-everything -in-place rituals of the night -(  Linny and Tuck and the unattractive but oddly adorable Backyardigans) - I think  of the world that R has opened up for me!

A world  where Turtles rescue Dinosaurs, and rocket ships with little children in them fly

Where my plebian neighborhood is a wonderland just because of snow ,

Where our 18 dollar Walmart Christmas tree with its tawdry jewels is a thing of promise
Where you jump on trampolines and swimming pools -come rain and snow

Where being in an airplane is a privilege

Where, I ,  myself have been reinvented

For when I look at myself through R's eyes I do not see an ordinary, weak person

I see a strong and  kind woman .. a person both deeply beloved and capable of extraordinary love

The big fallacy is that life after a special needs child is doomed

But  this life of mine  is proof that it can be full of joy -if you open your heart to the world that your child  will create for you

A special needs child ( or indeed any child ) can be your special purpose child .

"Nothing is good or bad .. its thinking that makes it so " says Shakespeare.

"Shee Mother "( sleep with mother ) bargains R craftily from the bathtub

( his Dad usually puts him to bed but R is sulking due to being scolded for leaving the bathtub -streaking through the house wet  )

I get ready for his performance extraordinaire .

For R is able to produce tears on demand. I am not disappointed

After none of his tactics work - he holds my face and puts his nose to mine - looking into my eyes - assessing my resolve

"Shee mother" he coos - one last try - rubbing his velvety cheek on mine

I hug the great fortune that being R's mother is to myself- reveling in the sheer deliciousness of his ways- even as I tell him "Shee Pa" ( sleep with Papa)

"Don't worry about us " , I tell our acquaintances with NT kids who see us as hardworking parents with the onerous task of taking care of a handicapped child " we are very happy "

Though they look unconvinced - unable to imagine that we mean it- its the truth

This child - this life - is no burden

This child-my life is a gift

Thursday, December 3, 2009

Why Children with Autism dont talk ?

“Is he saying anything yet”?

This is the invariable question that we used to get from R’s grandparents every time they called.

R’s grandparents have a very simple view of Autism (especially my mum and dad) .

They think R is a quirky kid (my side of the family is full of people with borderline aspergers so the spectrum of what passes for normal is pretty wide).

They see him as an intelligent child who basically cannot speak.

This is true to an extent but its not fully true

Especially if you think of the corollary – which is that they believe that speech will come (automatically) and that R will not need anything else once speech comes

Of course we have spent a lot of time thinking of speech.

This spring, DH and I said it out for the first time.

 I was doing my usual picking up before going to bed and we were getting ready for his IEP meeting.

You see, I was starting to feel that speech would never come.

But I could not bear to say it out aloud

But that day I said “What If he never talks .. Have you ever thought that could happen?”

DH sighed and said “Well we need to look into augmentative devices “

I sagged with relief.

Just saying it out loud felt like a weight had lifted off my shoulder

Its best to take the bull by the horn in most things and certainly that is the case with Autism issues

Fall has come and my fear is slowly ebbing

Speech had many hurdles for R. There were lots of gates that had to open before speech could come.

While I am no expert in Autism – we did spend a lot of our waking hours working on speech and thinking about it

I know this was the biggest question in my head in the months just before Autism.

I am writing this all down in the hope that it may help someone else( its long and its kind of boring and most of the autie mum and dad readers of this blog know this already. Also I am sitting in a plane with plenty of time to pontificate  )

Gate One

Auties think in pictures not words.

Imagine thinking of everything – only by the thing itself and never by the way it sounds ( which is the spoken word )

Symbolism is a critical step that is missing for many Auties – If you think about it all words are symbols – so the way the word "coffee”sounds – is a symbol for coffee

I know in our case some rudimentary pretend play( which also uses symbols ) has come along with speech

They way to cross Gate one was of course to skip the sign and skip the word – but communicate mostly with the use of PECS ( Picture Exchange System)

While PECS are a symbol – they are a much more direct symbol than the spoken word

Gate Two

Lack of Joint attention and Social Engagement and Referencing

Due to a variety of reasons ( overwhelmed by all sensory overload or under-load ), auties are paying attention to other things in their environment - not just the people – the humming of the fan , its circular motion etc

NT babies on the other hand spend all their time focused on their caregivers

Watching the mouths of the people moving .

Watching for the sounds in the environment from these people.

NT babies are learning about language constantly from the minute they are born becaue they are programmed to do so.

Just try this on your drive home today - look out the side of your car to the car in the lane next to you.

Almost every time the driver will turn and look at you. ( if not you can diagnose autism right there on the spot - just kidding LOL)

Because Neurotypicals are constantly in a state of social referencing

Gate 3

Inability to imitate

Much of early learning is done through copying .

In fact a theory says that some Auties are missing mirror neurons.

(Mirror neurons help you feel the way somebody else if feeling even when they are doing an action that you are not doing – Example how our mouth waters when you see someone else digging into a tasty meal even though we are not eating l)

I remember a key moment when I noticed that R reacted a little differently – we were driving back from DC last Fall- my MIL and SIL were with un in our Minivan

My SIL yawned and of course the rest of us started yawning

The only one who did not was R

Gate 4

Understanding the purpose of communication

Many auties do not understand that they can ask for something in order to receive it

Even in their early days - many of them have not spend countless hours in the back and forth response with their caregiver

NT babies who spend a lot of their baby hours doing just this and understanding the reciprocity of human interaction – cause and effect

Give a smile to get a smile

The ways to open Gate 2 and 3 and 4 is of course one on one engagement with the caregiver – especially something like Floortime/Sonrise /RDI - to use what motivates them in order to create these buliding blocks of development

Gate 5

This is our special cross to bear – Apraxia .

Fortunately, not all Auties have this problem

This is where the person is unable to make their mouth move the way they want it too

Its proved to be one of the hardest challenges our child has to deal with

However - this gate too - is opening slooooooowly but surely

We are using the Nancy Kaufman principle of using word approximations.

Even making sentences where each word is an approximation – and now that I am noting and recording – I find that R has a fairly decent vocabulary (very behind for his age but much ahead of what I expected )

Gate 6 and so on

Many barriers still remain of course. There is so much practice in language and comprehension  that auties miss.

 Plus even while the building blocks of joint attention and engagement are being created - they need to be strengthened almost continuously.

Because the call of the rest-of-the-stuff their sensory system is seeking is loud and insistent!

R’s apraxia is brutal and even as we are overcoming it I am aware that there are countless hours of language practice that R has missed and is missing- as we speak

But we are definitely on our way

This really is such a long post

But maybe a parent with a newly diagnosed child will read this

And know that the road to language has many barriers but these barrier can be overcome

The way to overcoming them is to observe your child, identify the barriers and then systematically overcome them.

To never simply wait for a miracle to unfold.

This Spring we were afraid that R would never talk

But by Fall – in spite of the fact that all the odds were against R ever talking – I know he will

Now when his grandparents call

R uses the few words that he has – "Hai" he says in greeting and "Gud by" ( good bye ) he says in Farewell after listening to their doting adulation patiently

And each hard-earned word is music to our ears

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