Sunday, March 11, 2012

Breakfast with Zabi

Honesty.  I am hoping that by sharing with you a typical itty-bitty part of our day that someone will recognize my daughter.
We have been to developmental specialists, speech therapists (she has ST every week at the local school), and geneticists to name a few.  We have had an MRI.  Miss Zabi-Chu has been home for over two years.
Don't get me wrong - we love this bundle of sweetness over the moon, but like every mama, I want my daughter to be the best that she can be - I want to help her realize her potential and her dreams.  Honestly - I don't know HOW to do that!  She is one of the most gentle, loving, calm, nurturing, thoughtful children I have ever had the privilege of nurturing.  She turns 7 next month.
We know that she had less that 10 words that she used in China at age 4.5.  Her original diagnosis was cerebral palsy, that China performed surgery for and corrected (say WHAT?????).
She also has low muscle tone, but outstanding fine motor skills - she could tie a bow at age 4.5.  She has great gross motor skills - she mastered stilts in a day at Christmas and has ridden a bike with no training wheels since last summer - rather Evil Kenieval style - stunts galore!
She has been diagnosed as a carrier of G6PD - an enzyme disorder that doesn't interfere with daily life as a carrier.
She also has mild ptosis - she doesn't have the muscles to lift her eyelids quite all the way open.
We are unsure of her IQ, perhaps this is the key to the puzzle?

Here is a scene from this morning -

I wan toas.
I can fing.  (I can't find it)
The bread is on the counter.
she searches and searched all the counters.
I can fing. (can't)
What are you looking for?
Toas.  (I can't find the toast)
There is no toast on the counter.
grunt/sigh - stands staring
What are you looking for?Wwan toas.
Here, I’ll help you look.  What are you looking for?
no response
Are you looking for a toy?
Are you looking for your clothes?
Are you looking for food?
OK - you are looking for food, something to eat - let’s look together.
Any food here?
shakes head
Any food here?
shakes head
Oh - there is some food - here is a bag of pretzels - is that what you are looking for?
shakes head
OK - let’s look over here, do you see any food on this counter?
points to bread in a bag
Do you see any food on this counter?
shakes head no
Is this bread food?
Yes, the bread is something we can eat.  Bread is food.
Do you see any food on this counter?
Ea brea.
Sure!  Here, I’ll open it for you.  I hand her a piece of bread.
grunts in frustration
What do you want to eat?
Co cera (cold cereal) - hands me the piece of bread (she is beginning to give up).
Hmmmm - that is not what you told me you wanted.  You said you wanted toast!  Do you want toast?
OK - what do you have to do to the bread? (she has been making her own toast with butter for a long time)
Sure, here is some bread.  I hand her a piece of bread again.
Bua (butter - she is giving up).
No butter yet - you have to do something to the bread first.  What do you have to do to the bread to make it toast?
That is awesome!!!!!!  Toasting is how we cook bread to make toast!  Perfect - you found the bread on the counter and now you have to toast it!  Go for it!
Although this actually went on for longer than the dialog above - many grunts and sighs and blank looks.

This is a typical scenario that is repeated a million times a day here - substitute the item being talked about.  Miss JiJi is already starting to help Miss Zabi and "talk" for her.  Miss JiJi who has only been home for not quite 3 months.  I think that perhaps with JiJi's arrival, it has made me more aware of where Zabi really is.  They are only two months apart in age.

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