Tuesday, December 30, 2008

I am not in charge :-)

So many of my friends tell me how much Autism has changed their lives and themselves forever. Its made them sadder and full of care
In my life it has had the opposite effect
When I was pregnant I cannot tell you how much care I took .. I researched everything to death .. peeled fruit to avoid pesticides.. never ate any fish raw eggss alcohol ... you name it - i did it
I prayed so hard for a normal child
That is all I wanted- normal
And then I had an autistic child
If there ever was a hint from the universe that I was not in control no matter what I did .. there it was
Suddenly it was in my face .. how fast life can change in an instant
Knowing that you never know what happens the next moment has made me determined to enjoy each moment to its fullest
Life is much more beautiful even when its hard
This has been the gift of autism to me

Saturday, December 27, 2008

its over

I cannot say how sad I am that this vacation is over.
it has been really really blissful - we just came back from our last walk on the beach. I am writing this post on my laptop on the balcony in the simply gorgeous twilight on the sea
Thank you god for this beautiful time and beautiful place
I truly think that this vaction ha sbeen good for R as well .. we have gone into the sea everyday .. he has loved playing in the sand and I think he really loved having us around all the time. Now when he cant see me for a few minutes.. he does not run around franctically looking for me in desperation . but seems so much calmer
I do think he misses therapy and misses his computer ( I dare not let him use the laptop )
The only thing about a seas side vacation that kind of sucks is just how messy it all is - the sand it gets i =n everywhere
And what do I miss about home
The amount of space
My cleaning supplies ( oh how I mss my Dyson )
his 1-2 hours of therapy every day ( that is when I get all my adult time )
Having said that .. I can mournfully admit that I am dreading going back

Friday, December 26, 2008

DAN visit this Monday

So we visited his DAN doctor .. the doc was very happy at the progress that R has been making
He suggested the following
Add TMG and Taurine
Get the urine test re-done to see if mercury has reduced through all the other things or not
i was feeling pretty guilty about not being so good on his multivatamin- he showed us his diagram of the methylation cycle and how the Vitamin C along with Zinc ( in the supplement that we have NOT been giving him )is so good for him
GUILT

Thursday, December 25, 2008

Woe is me

food and sleep still remain our worst battles
Sigh
Enough Said

The sea is the real thing

I am writing this post while sipping coffee sitting by the sea
Its not as amazing as it could be as its a pale pale day and kind of chilly but still ...
its the sea and the sounds of the waves crshing is a treat ( as is this new flavor that Coffemate has launched called Italian Sweet Cream
We had the most amazig OT hour yesterday . R and I dug our heels in the sand and met the waves . The sound of the waves and the feel of the crashing water is such perfect therapy.
All the ballpits, platform swings etc etc are mere substitutes for this-- the real thing!
I was reminded of Bill Stillamn's articles ( here are his archived articles of this handsome man an ASD consultant who writes so beautifully http://www.williamstillman.com/archive.html) - where he says he is sick of parentc complain about how expensive it is to raise austistic child. And how these things like playing in the pool are amazing valuable experinces for our kids

Thursday, December 18, 2008

Unexpected

When we first got a dagnosis of Autism .. everything I read suggested that autism woudl take a terrible toll on my life and that my autistic child would be a burden in every way on me
Yesterday it hit me that in our case the opposite is true for now.
Everything else in my life kind of sucks right now .. ( I need to get my mojo back .. but for right now at this moments - everything kind of sucks )
Everything, except for my autistic son.
At the end of a pretty rotten day that was yesterday - my "handicapped" child's tight hugs and kisses are like balm

Tuesday, December 16, 2008

Let the games begin

.. or restart .
R has started playing word games a little in the bathtub.
Not like he liked them once but at least a little
So rather than making words like "BLUE CLUES" and "NEXT" ( guess who has been handling the remote control - LOL )
we did this yestreday
R- NEXT
ME- TEXT
R NEST
Me PEST
R - YEAH
Me - YEAR
R - made a whiny protesting noise
ME - this is fun isnt it and wrote FUN.. YES
R - NO
okay then LOL
The other idea came from something Padma said on Hyperlexia -- so instead of using PECS all the time or words or signs
I have been asking questions verbally and also writing them down
like on the little whiteboard that we stick on the frig I wrote yesterday
"COME WITH MOM TO MALL?"
YES NO
R smiled and touched YES and also signed YES and said "esss"
how is that for enthusiastic agreement ...
This was such an AHA moment for me

Monday, December 8, 2008

Soothing Rituals

One of the best parts of the day for me are when DH and DS are both asleep and I can peacefully restore order to the house.. wiping , swiffering and windexing ... putting things back .. finding missing puzzle pieces
Every object without its wearer looks so bereft .. that I am sometimes quite maudlin
Anyway these soothing rituals of life are so comforting to me that its little wonder that to me that people with special needs cling to their rituals too

Perfection

One of the things I that I never thought I would hear some one say .. is how strong I am

You see , I am one of those people who cry in sad movies and sad books and are just so over emotional about everything

But the other day a simply perfect friend of mine said we were her inspiration

Now she has perfect everything – perfect house, perfect husband, perfect child.

And she is so wonderful that you just love her in spite of her total awesomeness.

She said she told me that till she knew us she was always scared of having another child- afraid that another child would be less than perfect and she would not be able to deal with it.

But seeing us taking so much joy in being R's parents made her realize that life with a less than perfect child could be beautiful too.

So many people tell us how strong we are .. How we are making lemonade when life hands us lemons

It's a lovely compliment. But I am not sure how much we deserve credit for the positive attitude

You see, to us, our son is quite perfect


 


 

Monday, December 1, 2008

The best place to be in

... is inside your hug
I am away this week and know how true this is
The best place to be is inside your hug
Took this picture last night
R was sooo clingy this weekend ... Its like all weekend he knew I was going away
How he knows ... I do not know
There is a theory of autism called the broken mirror neurons theory -
Example normal people have mirror neurons - so if I see you eat something tasty my mouth will water
Some scientists claim that Autism is caused by broken mirror neurons
Interesting theory
But what puzzles me is R has ACUTE empathy - rather than being oblivious to people - he senses what they are feeling and starts feeling it himself
Like this weekend .. he knew I was leaving Monday - he whimpered and looked downcast most of the weekend and was cling cling cling and today when I opened my suitcase in my hotel .. I realised with a pang that he had put a few of his books in there
It seems to funny to me that while I worried about him turning into an unemotional detached child when we first learned he was Autistic and read the stupid outdated books like "the world of autism"... the reality is quite the opposite

But once I leave he bounces back

Floortime Lite Mama

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