TheBanyanTree: Life Stories 79

Mon Dec 4 08:24:29 PST 2006

December 4, 2000000006

Dear Yous,

	Meyshe is downstairs eating his breakfast 
and moaning loudly while running back and forth 
and jumping.  This is standard, typical autistic 
fare.  And then, he is the one who says things 
like:  Love is the realization that everything is 
sacred.  Nobody's right or wrong.  That 
differences are gifts not curses, to appreciate 
everything around you.  My son is a large 
mystery.  According to his psychologist who is a 
specialist in Asperger's Syndrome and high 
functioning autism, I should go down there and 
say, "Meyshe are you aware that you're making 
noises, running and jumping?"  That will bring 
the behaviour to his conscious mind and from 
there he can try to control the behaviour.  But 
I just feel like he's working something out 
downstairs.  Some thought, some emotion, some 
incident or situation.  He often identifies these 
jumping and moaning fits as, "daydreaming".  I am 
torn on how much autistic behaviour to try to 
extinguish.  I mean, you can't eliminate all of 
it.  But his therapist tries to get him to wear 
clothes like the other kids do (jeans, running 
shoes and a shirt, rather than shorts, sandals, 
and a shirt).  And I wonder about all this 
effort.  No matter how you dress him, he's still 
autistic, and that stands out like a sore thumb. 
He's just different.  Like putting lipstick on a 
camel.  It's still not a pretty woman. 
Nevertheless, I don't want Meyshe to scare the 
other people, so I cooperate.  And I always ask 
myself, whatever I have chosen to do, "Am I doing 
the right thing?"

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Whoever has the crisis

	When Meyshe and Feyna were babies, there 
were a lot of behaviours that I used to write off 
as twin mysteries.  When I was with one of them 
in one area of the house, and that infant began 
to cry, the other one, way over on the other side 
of the house would start crying, too.  When they 
were toddlers, I would take them on walks in the 
morning.  We'd just stroll through the 
neighborhood past the driveways and front doors 
of the rest of the inhabitants.  We'd go about a 
block, turn around and go back on the other side 
of the street.  It was our time together and I 
loved it.  They were greatly amused by the great 
out of doors, even if we went past the same 
houses over and over again, so their needs were 
taken care of.  This gave me time and permission 
to think whatever private thoughts I had.  With 
the house full of David and his two boys, the 
twins and a nanny, who was provided by my 
generous parents, I had no space or privacy at 
all.  I was taking care of two boys whose mother 
had just walked out on them.  They were both in 
their separate states of shock, reacting to it in 
different ways.  Alex busied himself sitting at 
the piano improvising, and at the computer, 
teaching himself computer languages.  Ben was 
very passionately involved in despising me.  That 
was my role.

	"Fuck you!  You're not my mother!"

	Then all attention shifted to Ben.  How 
to fix him.  How to rein in the fury.  How to get 
him to behave civilly toward me.  The boys 
required a lot of thought and exquisite patience, 
two things I learned to do as a step mother.  And 
then there was the oblivious husband who needed 
me to call his attention to whatever was 
happening in the house and the world.  He 
wandered around purposefully, bumping into 
peoples' feelings and being non plussed by the 
whole human condition.  And then, there were the 
twins who required my every moment of attention. 
So the walks in the morning were my haven from a 
world that was assaulting me.

	As we walked, we would pass by driveways 
with big garage doors, and on some invisible 
signal, Feyna and Meyshe would run up the 
driveways, turn around and lean their backs up 
against the garage doors.  They'd stare ahead, 
not looking at each other, pre language, just 
stand there for an unspecified period of time. 
Then suddenly without any communication whatever 
between them, they would both come running down 
the driveway toward me, simultaneously, and 
continue the walk until the next driveway they 
fancied.  And it was not every driveway either. 
Somehow they communicated with each other without 
my fathoming it.  They would act in unison, no 
motion, no nod of a head, no noise, no touch, no 
nothing.  I used to scrape my brain dry trying to 
figure out how they managed this.  But I never 
came up with a decent explanation.

	When Feyna began to develop language, 
Meyshe lagged behind.  She would put words 
together and make herself heard and understood. 
Meyshe could get the nouns.  He could label many 
things table, chair, ball, Feyna, Mama, glass, 
juice, cat, but he couldn't string two words 
together to save his life.  By two and a half, 
however, he had learned to read and write from 
watching Sesame Street, and would sit on the 
floor with a pile of alphabet refrigerator 
magnets, spelling out words:  ELEPHANT.   SOUTH 
AMERICA.  He astounded me.  He may not have been 
able to speak it, but if I wrote it down, he 
could read it, and say it aloud while reading. 
His lack of language was a crisis.  I sat him 
down at the kitchen table and placed two glasses 
in front of him.  One was filled with water.  The 
other was filled with blue water, from a good 
splosh of food colouring.  He could say, "water". 
He could say, "glass".  He could say, "blue". 
But he couldn't say, "blue water", no matter how 
I coaxed him.  My little wheels went spinning and 
tumbling.  I got out a pad of paper.  I wrote 
out, "Blue Water."  He read it: "Blue Water". 
But without the written words to look at, he 
couldn't say it.

	One day, David and I were headed out the 
door, and I announced to Feyna and Meyshe, "Mama 
and Papa go bye bye in the car."  Poor Feyna 
began to fret and whimper.  She held onto my leg 
and pulled at my skirt.  But Meyshe just went 
about his business, unaffected.  I took out the 
pad of paper again.  I wrote down, one word per 
line, so he could keep the words separate,

	"Mama
	and
	Papa
	go
	bye
	bye
	in
	the
	car"

	He scanned it, read it aloud, and then 
began to cry and hold me.  The little wheels spun 
again.  There was something akin to auditory 
dyslexia.  That's all I could come up with.  The 
words, when they were poured into his ears, lost 
sight of each other and tumbled down all out of 
order, but visual signals would stay put as 
evidence, something solid.  What I had reasoned 
out from my ignorance was an "auditory processing 
dysfunction".  It was a known animal, but I 
didn't know it.  Not yet.  So here we were, the 
twins at two and a half or quarter to three, and 
Feyna learned to speak for Meyshe.  She would 
come into the kitchen where I was whipping up 
something and she'd say, "Juice".  She knew I'd 
pour two glasses.  She'd take one and bring it to 
Meyshe.  Somehow he'd communicated to her that he 
wanted juice.  She wasn't interested.  And when 
Meyshe gained facility, I could write him notes: 
"Want juice, Meyshe?", and he would write down in 
his big scrapey baby hand, "Yes, juice."  I used 
to muse about the way my twins were being taught 
by their crazy world.  And one of the first 
things they learned was, "Whoever has the crisis, 
owns the parents."

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-- 

Tobie Helene Shapiro
Berkeley, California   USA

tobie at shpilchas.net