Monday, March 30, 2009

In Sharp Focus

S is talking of another child she works with as she walks into R's therapy room ( really its his nursery with a table and a chair in the center and a Rubbermaid box of therapy materials )

" T is a darling" she says " His only other problem besides being blind is to be severely autistic "

This is the kind of blithe understatement you will only hear in the parallel universe in which us special needs parents live
She is right in a way .. There are many things that T probably CAN do and its better to focus on his different abilities than on his disability really

Two years ago, when we learned that R had Autism, if someone had asked what my most ambitious dream for R was .

I would have said that my dream was that R be indistinguishable from his neurotypical peers.

I knew so little when I wished this abysmal goal

One because R is unique - to only hope for him to be "just like everybody else " is to not to be fair to him ( or any child ) . It would be to wipe out everything that makes him special

Last night we had dinner with some friends. They have two young girls – 3 and 1 . We were having dinner together ( potluck pizza – ie they ordered a pizza and so did we ) And the three kids were playing in their family room

Like many special needs mommy we are automatically watching kids through reflective eyes.

I saw the little one year old constantly watch our mouths move. (is it wonder that language comes suddenly and surprisingly to neurotypical kids – when they spend all their waking hours watching grownups talk )

I saw the 3 year old constantly try to get our attention, dancing with a scarf, trying to adorn me and her mommy with it so

While R found a block of numbers and wrote this – 625371(seems random but look a little carefully and you will see what it means )

R kissed everybody ( all the women actually – the two girls and their mommy- he just prefers to say Hi to men and will sometimes hug them ) and even played a little with the baby ( ie she tried to engage him and he responded )

So its not that R was not affectionate or social ( in fact he kept coming back to me to kiss and hug me from time to time – really I am yet to meet a more loving child )

Or that the girls were not smart – they actually seem very smart sweet kids

But, its as though while all three are watching the same picture - what the two girls perceive as the background and what is the main picture- is the opposite of what R sees in that picture

There is no absence of love in R, as there is no absence of intellect in the girls .

Neither's interpretation is wrong per se - Its just that they are paying attention to different things

But what they see in the picture is because of who they are. And if we keep telling them that this is wrong – we will not only ruin their self image- they will also never see the picture the way they were meant to.

Yet we need to make sure they see the whole picture too. Its such a delicate balancing act

Like a said 2 years ago – I had a lot to learn – when I wished that R would be just like everybody else .

My vision is in much sharper focus now.

I wish simply for Self reliance ,Happiness and Love

S predicts for R "I think he will be fine.. he is so bright you know .. He will probably be one of those weird people who only have a few friends but do something good"


And that will be awesome


 


 


 


 


 

6 comments:

All About the Bailey's said...

I enjoyed this post! Thanks!

aninont said...

625371
I am not good with numbers ...can you explain please?

K said...

Each of the two numbers taken at a time adds to 8
6+2=8, 5+3=8, 7+1=8

aninont said...

Thanks,got it.

Kara said...

I love the way you think. Write a book, will ya?

sarahandscottsmommy said...

Whew! Glad you explained the number...I didn't get it either. I agree with Kara.

Floortime Lite Mama

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