TheBanyanTree: Life Stories 152

[Tobie Shapiro]

February 15, 20000007


Dear honeypie,

	It was one of those mornings when I just 
didn't feel like doing any of the rote things I 
usually do upon getting up.  I thought maybe I 
could get away without taking a shower until 
later, so I did the smell your own armpits 
routine.  I did not come out looking good.  So I 
did the tide me over dance.  I washed under my 
arms with a soapy hand towel.  Now I smell very 
good, but I still have to do the full shower 
later.  What a waste of soap.  I mean, why not 
just go around stinking?  I know it's a little 
inconsiderate, but just how close do I get to 
people every day anyway?  I'm not waving my arms 
in front of them, and I don't stand in front of 
fans with my arms up.  We need to examine these 
social edicts more closely, in the cold light of 
day, without the prejudices we harbor toward 
ritual and habit.

	Still, I feel better not stinking.  It's not like I don't have a nose.




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Meyshe goes to school

	The summer after the October 1991 fire, 
Meyshe and Feyna were both enrolled at Circle 
Preschool.  The cooperative they had gone to 
their third and fourth years was closed to us by 
Dianne, the teacher in charge who said that Feyna 
was welcome to come back to the nursery school, 
but Meyshe could not return.  So I looked for a 
likely place.  I wanted to keep Meyshe and Feyna 
together.  Circle preschool was unusual in that 
they accepted children with developmental and 
other disabilities.  Twenty percent of the school 
population was reserved for those special 
children.  They told us that the twenty percent 
fit right in and were by and large not noticed, 
that they were given individualized attention, 
that conferences with the parents were frequent 
and communication was on a daily basis.  They had 
staff trained in special education who could 
attend to the challenged children.  What this 
meant was that for the first time since the twins 
were born, I actually would be able to drop them 
off somewhere and breathe without having to be on 
constant high alert.  Even so, I attached myself 
to a pager so that in the event that Meyshe 
became impossible for them to deal with, I could 
be contacted.  I dropped them off and waited 
outside my beeper for that call.  I had a few 
hours.  I didn't know what to do with them.  They 
never called me to take over, and I was 
astonished that anyone else could handle him but 
me.

	Meyshe, at five and some months, was 
already recognizably, obviously different.  We 
did not have a diagnosis yet, but he was in 
speech therapy through Children's Hospital of 
Oakland, and God knows he needed my constant 
guidance at home.  He did not play with the other 
kids, avoided all eye contact, ran away when 
approached, grabbed things which he quickly 
discarded, sat still rarely.  I wished at the 
time that I could have seen an older child who 
had been like Meyshe when he was younger, and I 
thought maybe at Circle Preschool, I would get my 
chance.  But there was no other child like 
Meyshe.  He baffled experts.  He had little 
verbal language, but had already mastered 
literacy.  Where to place him on the vast 
spectrum of developmental disorders?

	I pondered my boy and his dilemma.  Where 
was his language?  Why could he communicate with 
Feyna, but with no other people his age?  It's 
not that he ignored them, or didn't know they 
were there.  It was more like he actively pushed 
them out of his life, away from his private 
world.  And it wasn't even that he didn't like 
the other children.  It was more that he just 
couldn't handle them.  They were too complicated, 
too full of information that assaulted him.  It 
seemed as if the outside world and all the people 
in it assaulted him.  He was at home with only 
me, his sister, and to some extent, his father. 
His father was a distant man, and his emotions 
were hard to read, even for me: that steady gaze 
off into space, the big mind working behind the 
pale eyes, his mouth fixed in neutral.  And then 
there was the suspicion that he never fully 
accepted his defective son.  Whatever his 
feelings, they were hidden from anyone's, maybe 
even his own, view.  For Meyshe to be able to 
relate to no audible or visual cues must have 
been near impossible.  He allowed his father to 
handle him, but sought me out for affection and 
protection.

	There was a kindergarten attached to 
Circle Preschool.  This was where we planned both 
Meyshe and Feyna would go came the fall and the 
new school year.  The summer played out while we 
moved from our three month stint in the first 
house our family alone lived in since the fire, 
and moved in with my parents again.  We stayed 
with them until the big boat of a house, the 
eight bedroom mansion on the fault line, was 
ready for us to inhabit in August.  We moved and 
we moved and life went forward in spite of it.

	The conferences we had with the teachers 
at Circle Preschool were all positive.  He was 
getting additional speech therapy there, but they 
told us that during his one on one sessions, he 
didn't sit still, struggled around the room 
touching everything and running, if one could run 
in a very small office, from the therapist. 
Feyna, although she threw an occasional tantrum 
of frustration, was doing well.  Her disabilities 
were not apparent yet.  Meyshe had a head start 
on her.

	Before one of the conferences, I came to 
the school and watched my children from the 
sidelines.  Meyshe was sitting on the ground near 
a jungle gym.  He was sifting through the dirt, 
when another child came up to him and pushed him 
for no apparent reason.  It seemed that this was 
not even going to register on Meyshe.  He just 
got up with his handful of dirt, vacated his spot 
on the ground and climbed to the top of the 
jungle gym.  The boy who had pushed him had taken 
Meyshe's place on the ground and was digging with 
a plastic shovel.  Then Meyshe leaned out over 
the scaffolding of metal bars and dropped his 
handful of dirt onto the boy, who looked around 
for the source, and not finding it, got up and 
sauntered off.  This was one of those times that 
I was torn between telling Meyshe to stop that 
obstreperous behaviour, and yelling out, "Good 
job!"

	So it was not that he was oblivious to 
the other children.  He simply didn't interact 
with them the way the other children interacted 
with each other.  The trickling dirt trick was 
clever, even eloquent; certainly its grace and 
elevation were lost on the little bully.  But 
Meyshe's mother was very encouraged by this.  I 
wanted him to find the rest of the world, to meet 
it in the ways that regular children did.  I 
feared the gap between his development and that 
of his sister would become grotesque.  And of 
course I loved him completely, with a joy and 
commitment that made me want to sing.  It never 
occurred to me to judge him, to compare him 
unfavourably, or be disappointed in him.  My boy 
was a mystery.  He was fantastically gifted, 
loving, even compassionate.  It was all residing 
inside him.  It would have to come out.

	We had our calendars marked for the 
beginning of the new school year, and were busy 
settling in to the cockeyed mansion on the 
Arlington.  Then two weeks before the start of 
school, Circle Preschool phoned.  The special 
education teacher spoke to me plainly and said 
that they didn't have much to offer Meyshe.  He 
needed more expert attention and care than they 
could give him.  Feyna was welcome to stay but 
again we had to find another place for Meyshe. 
This was two weeks before the new year.  This 
gave us no time to do the research necessary to 
assure him a spot in another school.  This was 
when we found Waldorf for Feyna, that hilarious 
mistake, and when, pushed to the wall with 
deadlines, I enrolled Meyshe at the nearest 
public school in Berkeley.  I called the 
principal and spoke to him.  I described Meyshe 
in much too great detail, and asked if they had a 
kindergarten class for kids with developmental 
problems.  He said that Meyshe would have to be 
tested and evaluated to qualify for the special 
class.  And in the meantime he would go to the 
regular class.  I advised him that in that case, 
Meyshe would need an aid to assist in watching 
over him, because I couldn't come to school every 
day and be his designated guide.

	"We don't have any aids," he said.  "We 
can't pull them out of the air," and the Berkeley 
Unified School District (BUSD), to which I was 
getting my first rude introduction, had only so 
many positions for aids.  Meyshe would have to go 
it alone.

	I shook my head, and went into crisis 
mode.  "Let me understand you.  Meyshe is going 
to go it alone in a classroom full of regular 
kids.  One teacher and over twenty five pupils?"

	"That's all we can offer."

	"So you and the Berkeley School District 
want to take on the responsibility of enrolling a 
special student in a regular class.  You want to 
be liable if he should bite another child, or run 
off campus into the street, if he should damage 
equipment or create a problem, your one teacher 
is going to be enough to watch over him.  I am 
telling you that you will want him to have an 
aid.  This is for you, not just for Meyshe."

	The aid appeared out of the air.

	These aids were not trained.  They were, 
typically, lost young people straight out of high 
school who were at loose ends and needed a job 
instead of college.  The pay was better than at a 
MacDonald's.  The aid they assigned Meyshe was 
dispatched quickly by him.  He hid under a desk 
and the aid couldn't get him out.  He hit her and 
tried unsuccessfully to bite her.  The other 
children loved Meyshe because he disrupted the 
classroom.  They fought over the right to escort 
him to the lunchroom and sit near him, the wild 
boy, the one who controlled the teacher and 
frightened the aid.

	In the meantime, Meyshe had to go through 
testing by the school system.  They put him 
through their paces, as he put them through his. 
He hid from the ones administering the tests and 
pushed the test papers aside.  I sat out in the 
next room waiting for them to tell me I could 
take him home, that he was untestable.  And they 
did.  He was cleverer than his evaluator.  They 
didn't know what to do with him, because he 
didn't fit into the categories they knew and 
loved.  But this was a good thing, because it was 
clear that he qualified for special education, 
and after a month or so of his romp with the 
regular kindergarten class, he was sent to the 
smaller special needs kindergarten.  There, the 
teacher in charge, believed in rules and 
discipline.  Meyshe did not.  The aids were 
assigned to Meyshe.  Then after his first 
tantrum, they quit.  If he didn't want to follow 
the rules, he got under the table and evaded any 
attempts to apply the rules.  The aids were all 
amazed at his ability to read and write.  One of 
them thought handing Meyshe a book ought to be a 
good idea.  But he didn't think so, and tore the 
poor book to shreds, then threw the pieces at the 
aid.  When she tried to discipline him, he hit 
her, or bit her or ran around the room screaming.

	He was way too much for them.

	This was when I was introduced to the 
Berkeley Unified School District and just what it 
means to fight for your child.  We hired an 
advocate who would help steer us through the 
Individualized Educational Plan (IEP), a 
fundamental requisite that established a contract 
with the parents of children with special needs, 
setting goals and promising progress, placing the 
child in the proper setting and informing parents 
of their rights.  What we needed was to find 
another school for him.  Someplace where they 
would understand him and help him join the human 
race, maybe sit still long enough to learn 
something.  The advocate recommended a private 
school called Children's Learning Center, a place 
where the kids who couldn't be served by any 
program provided by the public schools wound up. 
The Berkeley School District would be required to 
send Meyshe to a suitable setting and pay for it 
if they had no appropriate setting for him 
themselves.  This was good because the tuition 
for a year's enrollment at Children's Learning 
Center was somewhere around $29,000.  Our path to 
Meyshe's education was being made clear.  The 
fighting with the district had just begun.

	It took from September until mid April 
for the district to agree to send Meyshe to 
Children's Learning Center.  By that time, the 
Berkeley schools were glad to be rid of him.  He 
could not be managed in the public sector.  At 
CLC, there would be six children in a classroom 
and three trained teachers.  This was the ratio 
he needed.  Transportation to and from the new 
school had to be arranged.  The district was 
obligated to provide it.  The little bus filled 
with children with special needs carried Meyshe 
away to his new school, and they carried him back 
again.

	He had been at CLC for three days when 
the director called us and said they had a video 
of Meyshe's progress.  Would we like to see it? 
Yes, we would.  The video showed Meyshe sitting 
quietly at a table, raising his hand to be 
recognized by the teacher.

	We fell off our chairs.

	"How did you do this?"  We were incredulous.

	"Oh, we know his tricks," they answered, 
and smiled.  This school would save Meyshe's life.



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Tobie Helene Shapiro
Berkeley, California   USA

tobie at shpilchas.net