TheBanyanTree: Life Stories 221

Thu May 17 08:18:20 PDT 2007

May 17, 2000007

Dear People I Rely On,

	There is way too much on my plate right 
now.  Not that usually, there's nothing on it of 
note, but at this particular time, the plate is 
more than full.  The sauce is pouring over the 
edge.  The servings are all running into each 
other.  There isn't anyplace on the rim of the 
plate that isn't covered with food, so I can't 
even hold this damn plate without plunging my 
thumb into the noodles and the gravy.  It gets so 
slippery that I'm afraid I'm going to drop the 
whole thing.  A crash to the floor, and there you 
have it: a plate broken into a hundred pieces, 
the sharp splintered porcelain all mixed up in 
the food, and the food splattered all over the 
room.  It will get ground into the rug.  The 
noodles will have to be picked up one at a time, 
and the turmeric in the curry will stain whatever 
it lands on.  This is a mess, kids!

	There's Meyshe's transition from high 
school to college.  Not going to be easy.  He's 
used to three teachers trained on his behaviour 
and disabilities, thirteen kids with a variety of 
disabilities themselves, everything in one room. 
Complete comprehension when he arcs out and can't 
handle things.  If he gets upset and marches away 
from the campus, someone comes to retrieve him. 
In college, he will have to rely on public 
transportation to get there and back.  Lots could 
go wrong there.  A simple altercation with 
another passenger could mean a melt down, missing 
his stop, panicking, getting lost.  The student 
body will be, by and large, a normal or quasi 
normal cross section of the population.  They 
will not understand him at all, and may not give 
him the time of day.  There will be little help 
in class.  He won't get extra points for 
remaining in his seat, and if he doesn't 
understand something, he'll have to ask to have 
it explained again, or just go on clueless.  No 
one is going to compensate for his autism.  He 
may have no friends.  He will have to hand in all 
papers typed and printed out on the computer. 
And for my own figuring, since the Berkeley 
Unified School District will no longer be 
responsible for Meyshe's speech/language therapy, 
his occupational therapy, his psychotherapy and 
social skills group, that's more than a thousand 
extra dollars a month in expenses for me, when 
I'm going to be trying to get by on maybe four 
thousand a month, at most.

	I'm trying to deal with the Regional 
Center of the East Bay to provide services for 
Meyshe.  And they are a financially strapped, 
legally restricted government agency that, I'm 
finding out, can't do much more than refer to 
other impoverished agencies.  I have registered 
Meyshe with the Department of Rehabilitation who 
may be able to place Meyshe in a part time job 
while he's going to school.  Or, they may not. 
Lots of paperwork required to deal with them.

	There are Feyna's troubles.  She's 
overwhelmed at school, taking three courses and 
having a hard time keeping up.  She's never done 
three classes in a semester, and when she usually 
did two, she had a tutor to help her with her 
focus and her organizational issues.  She has no 
help now.  She also has a job selling Cutco 
knives that doesn't make her enough money to pay 
for her transportation to and from school.  Her 
cat is very sick and may die.  We will be feeding 
her through a tube, and hoping that she'll 
recover.  Her friend, Alex, as disturbed as he is 
and as dishonest, will be leaving the bay area 
for someplace else after the semester is over. 
Feyna will be minus her main support system.  So 
much of her time is taken up by Alex that she 
will really feel the absence.  Her only friend 
then will be Natalie who lives in Walnut Creek, 
out through the tunnel.  Feyna is having more 
frequent melt downs and is afraid that she will 
do something to hurt herself.  We're adjusting 
her meds.

	The divorce settlement is going on 
forever.  I want it to be over, done, finished. 
But when it is final, my financial situation will 
change for the worse.  I have money socked away 
to buy a house with, but I don't know whether 
I'll be able to afford anything in this area.  I 
have to stay close to my mother.  She's 87 and 
will be needing me more and more as time goes on.

	I need to do my taxes.  Yup.  Haven't 
done them yet.  And because of the sale of the 
house, there will be a large payment, I am sure, 
leaving me with even less money for the purchase 
of a house.  I actually don't know what will 
happen to us.

	This is stressful.

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Meyshe

	There are some people who understand 
Meyshe, and some people who just don't know what 
to do with him.  Those that get along well with 
him see through the childlike behaviour straight 
to the soul: an unusually compassionate person 
who feels outrage at what the Chinese have done 
to Tibet, couldn't stop contemplating what the 
Nazis did to the Jews in World War II, cries at 
the headlines in the newspapers.  He wants to 
save the world from the people in it.  He says he 
is a feminist and champions women's rights.  Any 
sort of injustice gets him riled up, unable to 
settle down.

	He is a walking encyclopedia.  He 
studies.  He is always reading.  He has read the 
Diary of Anne Frank so many times that I had to 
get him a new copy of the book twice.  The pages 
were falling out of the binding.  He fixated on 
Anne Frank, worshipped her.  I got him tapes of 
Winona Ryder reading the Diary of Anne Frank, and 
he'd play the tapes as he fell asleep at night. 
He listened to them so much that the tapes wore 
out and broke.  I got him the annotated Diary, 
and subscribed him to the Anne Frank Society who 
would send him monthly news.  He said he was in 
love with her and drew endless comic strips of 
his adventures with her.  He developed his own 
character, depicting himself as a goat.  He has 
never grown out of Anne Frank.  But he has 
branched out.  Unlike typical autistic people, 
Meyshe has a wide range of interests.

	His early struggles with language have 
somehow inspired an intense interest in them.  He 
can decode hieroglyphics, and draws them very 
well.  His birthday card to me one year was 
written in hieroglyphics.  He translated it for 
me, since I never lived in ancient Egypt.  The 
autistic piece of this was that he really thought 
that somehow I would be able to read it, since he 
could.  I surprised him when I asked him to 
explain it.

	"Oh!" he said, "I forgot you don't know this."

	He has his two volumes, thick books, of 
hieroglyphic dictionaries, and sometimes he'll 
bring them with him where he's going, so he can 
study.

	Without dropping the ancient Egyptians, 
he took up Hebrew.  Feyna, Meyshe and I, all 
three, were studying to be Bar and Bat Mitzvahed 
together, and it was Meyshe who learned the 
fastest and retained the longest.  Our teacher, a 
bright light on our lives, would read a word to 
us that hadn't been mentioned but once, months 
ago, and Meyshe would pop up with its meaning. 
We'd all stare at him in awe.

	While he was juggling hieroglyphics and 
Hebrew, he asked for dictionaries and books on 
Tibetan.  He buried his head in those books for 
weeks, and began writing sentences in formal 
Tibetan.  He wrote poetry.  He showed it to 
Samten, the proprietress of the local Tibetan 
restaurant we frequented, and she was slack 
jawed.  She examined his writing and said that 
she couldn't write as well.

	Then, he decided he was interested in 
Chinese.  I got him a huge volume of Chinese 
characters, and he put his  mind to it.  He'd 
search through the pages, making sense of the 
basic characters, then putting them together to 
make other words.  He got good enough to 
recognize and read simple sentences.  We'd go out 
to our favourite Chinese restaurant, and he'd 
bring his big book of characters and a pile of 
paper with him.  He'd copy characters out of the 
book, and the waitresses would hover behind his 
shoulder examining his efforts, exclaiming that 
he wrote beautifully, better than most Chinese.

	One of the teachers at his school was 
Korean and taught him how to read and write 
Korean words.  He explained to me, carefully, how 
this and that figure were pronounced depending 
upon their position among the other figures.

	For a while he insisted on calling 
countries by the names in their own languages. 
He would correct me.  Deutschland, not Germany. 
España, not Spain.  Nippon, not Japan.  He stored 
hundreds of words in a dozen languages in his 
ample brain, and would draw them out when he 
needed them.  For Channukah, I got him a set of 
thirty three CDs, each one a series of lessons in 
thirty three conversational languages.  He sat at 
his computer studying these late into the night, 
never tiring of them.  And in between all his 
studies, he would rise up, pace the house, 
running and hopping, flailing his arms wildly, 
talking to himself in a loud voice, laughing, 
moaning, totally unaware of what he was doing.

	"Hello, my name is Meyshe Benyomen Shapiro-Nygren.  I'm autistic."

	And some people would recoil, try not to 
make eye contact, retreat to some safe distance. 
Others would sense the person in there and engage 
him in conversation.  He longed for friends, but 
didn't know how to make them, nor how to keep 
them.  He would interrupt a conversation with a 
sudden change of topics, inserting his own 
interest into the flow of back and forth, a head 
shaking disruption.

	"Meyshe, that's off topic."

	"Oh.  Sorry."

	Then he'd employ strategies taught to him 
by his speech language therapist.

	"Speaking of health insurance, don't you 
know that Anne Frank believed in women's rights?"

	There are some things that most of us 
learn by osmosis.  We grow up around human beings 
in our particular culture nodding their heads in 
certain ways, arching their eyebrows at certain 
times, raising the pitch of the voice when 
insinuating doubt, standing no nearer than arms' 
length to each other, and we learn to do those 
things, read those meanings, understand the 
superficial and subterranean messages.  But 
Meyshe will not learn it from standing in the 
same room as it for a hundred years.  He will 
have to learn those things as most of us would 
learn quantum physics, equation by equation, law 
by law.  And he will have to become adept at it, 
or the world and all the people in it will not 
recognize him as an intelligent, complicated 
individual who deserves consideration and 
attention like everyone else.  The world will 
just view him as an aberration, something to deal 
with effectively rather than someone to interact 
with honestly.

	I am his best friend and guide.  His 
mother, translator, seer and advocate.  The goal 
is for him not to need me any more.  The goal is 
for him to take over the job of raising himself. 
He is my beautiful green eyed boy.  His twin, 
Feyna, is likely to be independent one day.  I 
can't know whether he will ever be independent. 
But his life doesn't depend on that as long as I 
am here.  I won't be here forever.  We have to 
hurry.

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-- 

Tobie Helene Shapiro
Berkeley, California   USA

tobie at shpilchas.net