TheBanyanTree: Life Stories 200

[Tobie Shapiro]

April 15, 2000007


Dear Community,

	Last night while I was lying in bed 
reading, Feyna came to my room.  She looked very 
morose.  She said she wanted to ask a big big 
favour of me.  Could I sleep downstairs in her 
apartment?  She said she was so depressed that 
she just didn't want to be alone.

	God, did I not want to go down there into 
her lair and sleep in her bed or on the couch. 
It's just not my place.  I've got my five pillows 
arranged just so.  I've got my noise maker on the 
floor playing ocean surf, song birds, buoys, 
owls, hawks, loons, crickets, frogs, everything 
but the railroad tracks.  And I have the fan 
going, aimed at me as I sleep so I won't get 
overheated.  I like my room cold at night.  Then 
I can wrap up in the covers, cozy, contrastingly 
warm.  And the light next to my bed is good for 
reading.  I leave it on all night.  This is how 
I've gotten accustomed to sleeping.  It's how I 
manage sleeping, actually.  I have to have my 
ritual, my arrangement, my nest.  If I don't, 
then I don't sleep too well.

	So Feyna wanted me to uproot myself and 
go down into her overheated apartment, sleep in 
her bed.  I told her I just couldn't do it.  She 
sighed a deep, sorrowful, disappointed sigh.  "I 
knew you wouldn't do it.  I was afraid of this."

	We talked for a while, and I kept trying 
to think of ways it would work.  Finally, I said 
to her, "How about this.  I stay up here and do 
my reading, and when I'm ready for sleeping, then 
I'll gather my stuff and come downstairs."  She 
agreed to that enthusiastically and with great 
relief.  I told her it may be a while.  Maybe an 
hour or two.  She said that was fine.

	I went back to my reading, being extra 
careful not to nod off even for a moment.  When 
I'd done most of my reading, I packed up my book, 
my alarm clock, my noise maker and my Teddy Bear 
(okay, so sue me) and my night cap (tiny bit of 
imitation Kahlua, twice tiny bit of imitation 
Bailey's, then the rest of the way up with 1% 
milk.  Slightly alcoholic, creamy, delicious, 
calming).  Then I descended into Feyna's 
territory, my arms full, hoping I'd remembered 
everything of importance.

	I knocked on the door, and first there 
was no answer.  I knocked again.  No answer.  I 
knocked louder.  She called out, "Come in!"  I 
pushed the door open and entered.  She was lying 
under an opened sleeping bag on her fold out 
couch.  The cats were scurrying around.  She 
followed me into her room.  Her bed hadn't been 
made.  I set up shop, putting my noise maker on 
the floor near the outlet, my book on the bed, my 
Teddy bear near the pillow, the alarm clock and 
night cap on the tall bedside table.  I turned 
the lamp on.  It was on the wrong side of the bed 
and it cast only a slight glow when Feyna turned 
off the overhead light.  Okay, I'd have to leave 
the overhead on while I read, and then get up, 
turn on the bedside lamp, turn off the overhead 
and get back in bed.  The other choice was to 
leave the overhead on and just try to saw logs in 
the bright light.  That's what I wound up doing.

	Feyna thanked me profusely for agreeing 
to come down and give her some human presence.  I 
told her she was welcome and repeated my concern 
for her emotional state. I was glad there was 
something I could do.  Feyna is moody.  Her 
moods, before the medication, were so volatile 
and extreme that she'd go through myriad major 
mood swings in a single day.  I charted them for 
a week.  It was breathtaking what she endured, 
just to get through a few hours of life.  When 
she started the meds, the chart stayed the same 
for three days and then suddenly it all cleared 
up.  Feyna was so relieved that she wept.  She's 
stabilized to the point that she has mood swings, 
but in a more normal arc, and there's usually 
some underlying reason for the mood.  Maybe it's 
her period approaching, or maybe she's scared 
about school work or a test.  This time around, I 
didn't even ask her.  She's been more quiet 
lately.  And that's part of the separation from 
her mom.

	I slept poorly.  I didn't have my 
collection of pillows, and I didn't feel 
comfortable in her bed.  My cat, Shulamit, came 
by several times to stare at me and jump up on 
the bed.  I was so glad she remembered me.  We've 
been away from each other for six months almost. 
I fell asleep and was awakened several times just 
by the difference in situation. And by the heat. 
It was so sweltering in there.  I got out from 
under the covers and lay on top of the bed, 
shifting around for a cool position, as if one 
existed.  I woke up again at 4:30 and was 
sweating heavily.  I got out of bed (or off of 
bed) and went in to the other room, bent over 
near Feyna's face.  I woke her up and asked if I 
could go upstairs now.  She stretched and said it 
was okay.  I put together my things and trudged 
upstairs, and then upstairs again to my room. 
With great relief, I plugged in the noise maker, 
fired it up, turned on the light next to my 
pillow, turned it down to "dim", climbed in and 
sighed a deep satisfied sigh.

	This morning, at 10:00, I have to meet a 
man named Leo Horovitz at Peet's.  I've contacted 
him through Jdate.  Another attempt.  This one 
has some character that comes through in his 
writing.  The hitch is that he's 79, that's 
twenty years older than me.  He's closer to my 
mother in age than he is to me.  But, I thought 
it over.  Hell, what do I care?  I'm not going to 
marry him.  Maybe he'd make a nice friend to 
bring to concerts or talk to on the phone.  So 
I'll walk over there and hope for the best.  I 
could do with a new friend.




                          
































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Protecting Meyshe


	The battles that I had with the Berkeley 
Unified School District (BUSD) over programs and 
placement for Meyshe probably knocked ten years 
off of my life.  It would be nice to sue them for 
that, but the lawsuit, itself, would probably 
knock off another ten years, and I really can't 
afford it.  In fact, I really can't afford to 
stir up the bile and keep stirring it up over a 
prolonged period of time for any reason.  It is 
bad for the jitters, bad for the immune system 
and bad for the soul.

	Nevertheless, that is what I had to do to 
protect Meyshe from the public school system that 
was supposed to be there to nurture him, teach 
him, in a way, defend his humanity against the 
ignorance he would suffer without such learning. 
That's the philosophical way to look at an 
education.  But as soon as it was evident that 
Meyshe would need special services, the school 
district made it clear that its purpose was not 
to educate Meyshe, or any child with special 
needs, but to oppose the innocent students who 
had only their parents to protect them.  The 
district was a machine.  It opposed with lawyers, 
with lies, cheating and malice.

	Meyshe was enrolled at Children's 
Learning Center (CLC) through his eleventh year. 
Then it was time for junior high school, and the 
BUSD insisted that they had the perfect program 
for him.  They described it as mainstreaming, 
said it was good for everyone all around.  I was 
skeptical.  At CLC, the classroom was composed of 
round about six students and three teachers. 
That's a good ratio, and one that was needed to 
carry out the behavioural techniques and goals of 
each child.  All three teachers had degrees in 
special education.  Meyshe was used to a lot of 
supervision and order.  How would he fare in a 
regular junior high school setting: one teacher, 
twenty five students, at the intersection of 
childlike energies and encroaching hormones?  I 
wanted mainstreaming to work.  I really did, 
partially out of bolstering the sort of hopes I 
had for Meyshe.  I wanted him to join the world, 
take his place among the "normal" people.  But 
junior high school kids are not normal.

	The district promised that there would be 
a core classroom in seventh grade from which he 
would travel out to his mainstreamed classes, a 
little at a time, as he was ready for it.  But 
they fought over securing an aide for Meyshe.  We 
had to hit them with the hired advocate.

	When the fall began, we were surprised to 
be told that there was no core class for the 
seventh grade.  He would have to go into the 
sixth grade.  So we agreed to that.  But then 
they told us that there was no core class for 
sixth grade either.  He would be mainstreamed, 
with an untrained aide.  One teacher, twenty 
eight kids.  I refused to have him thrown into 
the waters so suddenly.   All right then.  He 
would take one mainstream class, a math and 
science class, and spend the rest of the day in 
the special education director's office.  His 
aide would coach him on the rest of his subjects. 
This aide was barely a high school  graduate, 
herself, probably learning the material along 
with him.  This would be his education.

	It pains me to recall all this.  There is 
nothing so primal as protecting one's children. 
Here was an enemy, a danger to my boy, and I was 
internally, instinctively compelled to save him. 
We are built for the adrenalin rush: a sudden 
danger from which you run and hide, or face and 
fight.  But evolution has prepared us to do this 
minutes at a time.  There is a predator about to 
eat your child.  The adrenalin kicks in and you 
uproot a tree to swat the predator, to do what a 
mother does.  In five minutes, you have saved 
your child, or you are both some carnivore's 
dinner.  It is over.  If you've survived, the 
adrenalin recedes, and you recover from the 
experience.  But the BUSD required that I be 
saving my child for months at a time.  I was 
constantly on adrenalin, at high alert, ready to 
fight at any moment.  It did me damage.

	I was ready to fight as I fell into bed 
every night.  I was ready to fight as I brushed 
my teeth, as I practiced the cello, as I faced my 
husband and raised my children.  Come into a room 
where I am sitting at the computer, concentrating 
on some autism web site, or writing to one of the 
kids' teachers or therapists.  Come in quietly, 
on tiptoe.  Say my name softly, and the shock 
sends me through the ceiling with a jolt.

	Meyshe came home from school every day, 
pacing and hopping, making loud noises, jerking 
his arms around, trying to shake his day off of 
him.  I decided to go to school to observe him in 
his math and science class.  The district told me 
not to come.  It would be too disruptive. 
Several times after my repeated requests, they 
turned me away with one reason or another.  The 
real reason, I suspected, was that there was too 
much for me to observe in his class.  So I defied 
them and came, anyway.  I walked right past the 
office, did not check in, nor get my visitor's 
pass.  I went to his classroom, entered, told the 
teacher that I had an appointment to observe. 
She nodded her head.  I sat in the back of the 
room taking notes in a big binder.  The 
disruption, if there were any, was the behaviour 
in the class, itself.  There is no way I could 
have been noticed among the din.  There were 
twenty eight kids in the class.  They were rowdy, 
overturning chairs, spitting out windows, 
shouting at each other from across the room.  The 
helpless teacher stood at the front of the 
classroom and held her right arm up above the 
mayhem.

	"I am going to count backwards from 
five!" she shouted,  "When I reach zero, there 
will be quiet in the room, and you will all be 
paying attention!"  She counted:  "FIVE.  FOUR. 
THREE.  TWO.  ONE.  ZERO!!"

	There was no change.  The students roamed 
the room, pushing each other, tripping over their 
low slung pants, tossing objects to friends and 
adversaries.  They called out across the room at 
one another.  There was motion, laughter, 
swearing, shoving.  The count backwards from five 
to zero had had no effect whatsoever.  This did 
not deter the teacher.  She did this exercize in 
futility several times.  Coincidentally, that 
day's lesson was on statistics.  What are the 
chances that if she tries this for a fourth time 
that it will work?

	In the cacophony, Meyshe did what he 
could to cope.  The stimulation was way too much 
for him.  I watched my son shut himself down.  He 
hung his arm over the back of the chair, tipped 
his head down and became oblivious to the world. 
He put himself in a trance.  He was completely 
removed.  He stayed like that while the aide 
didn't notice him, for most of the class.  She 
was too busy taking down notes from the 
blackboard and the overhead projector's images on 
a brightly lit screen facing the clusters of 
desks, arranged in groups of four, so that small 
groups could work together if the lesson ever got 
under way.

	I had seen enough.  Mainstreaming sounds 
good: all our young people learning together, but 
it ain't for everyone.  I rattled the advocate's 
cage, who, in turn, tried to rattle the 
district's cage.  But the district didn't listen 
to him.  They insisted that the setting was the 
appropriate placement for Meyshe.  They repeated 
those exact words, as I am sure their lawyer had 
told them to do.  Why did they not respond to so 
glaring a problem?  Well, because they knew that 
if the case should go to hearing and we 
prevailed, they would not have to pay for our 
advocate's fees.  But if we had hired a lawyer 
(another couple hundred bucks an hour), they 
would.  It was money.  To them, the whole issue 
was money and had nothing to do with the welfare 
of a human being.  So we said, "Goodbye," to our 
advocate and hired a lawyer, an expensive lawyer 
with seven rows of sharp teeth and an impressive 
track record with the district.  They knew him. 
They'd faced him.  They'd lost to him.  They 
feared him.  Fear was good.

	I had refused to keep Meyshe in the 
program.  I'd yanked him out at the beginning of 
the fall of his second year there and brought him 
home.  I'd put together a program outside of the 
school.  I'd hired an artist to teach him art, a 
chess teacher to teach him chess.  What I needed 
was a general tutor to instruct him in the core 
curriculum.  Since it was the district that could 
not provide Meyshe with an appropriate setting in 
which he could learn, I turned to the district to 
send a qualified tutor, one of the ones they hire 
to go to the homes of children ailing in their 
beds, or otherwise unable to attend school.  I'd 
asked, and of course, they'd said, "No," until we 
hired the lawyer.  The lawyer wrote the same 
letter that the advocate had written:  "Send a 
tutor."  But suddenly, the district complied.  A 
tutor appeared, an angel named Mrs. Peetz.  She 
took Meyshe under her wing and taught him, one on 
one.  She came three times a week.  He hung on 
her every word.  There was nothing he liked 
better than to learn.  He was hungry for it.  At 
the same time as this was going on, I'd been 
forced to yank Feyna out of her abusive school. 
So, I had two isolated thirteen year olds with 
cobbled together programs, both home schooled. 
This went on for two years, while I fought the 
district over a placement for Meyshe, and tried 
to heal Feyna from the traumas she endured at her 
private school.  The isolation was stinging. 
Both of them skipped past junior high school 
while I carried on my crusades.  To this day, I 
do not know how I survived it all.




                          
































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-- 




Tobie Helene Shapiro
Berkeley, California   USA

tobie at shpilchas.net