TheBanyanTree: Life Stories 180

[Tobie Shapiro]

March 15, 200000000000007


Dear Ye Who Matter Most,

	So here's the deal about villainman. 
While my lawyer and I were in chambers with the 
judge, she explained to me some of the history of 
the case that had gone on since the last 
settlement conference.  Evidently, she'd had a 
lot of trouble with the opposing attorney, whose 
name is Sterling.  Sterling went way over the top 
and wrote Judge Preville a letter that was, how 
shall I say this, impudent and presumptuous.  She 
wanted to hold him in contempt, but thought if 
she did so, the case would go in the toilet.  So 
she didn't.  She regretted not being able to do 
so.  She complained about villainman and his new 
wife, Rebecca, saying that she thought Rebecca 
had convinced villainman that there was no 
sanctuary for him but her, and that my twins and 
I were the enemy.  She referred to villainman as 
not dealing with a full deck.  She also said that 
she was on the verge of not being able to be 
objective about the case, and she had to prevent 
herself from going over the line.

	In the process of explaining all this, 
she repeated a conversation she'd had with 
Sterling.  He was representing villainman and 
Rebecca in their proposal to wrest Feyna and 
Meyshe from me and have them both put in a group 
home (separate group homes), the kind the 
government runs.  Judge Preville described these 
as places you wouldn't want anyone to have to be. 
You have a key and you have a room that you share 
with another incarceratee in a house that has 
curled green linoleum floors and there's a 
bathroom down the hall.  There would be a den 
mother, so to speak, who would make sure everyone 
was in on time.  Your fellow inmates would be 
other people whom luck had forgotten, who had no 
resources to keep them out of the home, and no 
living person to protect them from this.  The 
reason villainman and Rebecca insisted that this 
was what to do with Feyna and Meyshe was that I 
was an unfit mother, evidenced by the fact that 
neither of the twins was independent yet, and 
living in the government run group home would 
inspire them to become independent.  It would be 
the best thing for them.  The Judge opened her 
eyes wide when she told me how she reacted.  "ARE 
YOU OUT OF YOUR MIND!?" she shouted at Sterling. 
Sterling pressed further saying that this was the 
way to make the twins independent.  Tough love, I 
suppose.

	I cannot shake this thing.  The man I 
lived with for twenty years wants to take my 
children away from me and throw them in a hellish 
home.  I thought about the nature of those homes 
and what that environment would actually do to 
Feyna and Meyshe.  It would crush them.  Meyshe 
would become schizophrenic and deathly depressed. 
Feyna would be sexually exploited within a week. 
When I got home, I locked myself in my room 
(well, there is no lock, but I closed the door) 
and cried.  There's been a knot in my stomach 
ever since.  A sick feeling in my heart, my mind 
races.  I can't comprehend the cruelty, the 
vengeance, the wickedness.  He is perhaps trying 
to get even with the kids for not speaking to 
him?  Or is he just a transformed man, so removed 
from his children that he doesn't think of them 
as human any more?  No, even that wouldn't do it. 
I'm removed from all the people living in such 
homes, and I ache for them as I type this.  What 
about their lives?  Who speaks for them?

	There is no danger that any of that would 
take place, of course.  Judge Preville lectured 
Sterling that no sitting judge would even listen 
to such a proposal, and would probably want to 
toss them all out of the courtroom.  "Just try 
it," she warned.

	Now you know why I've been distraught. 
I'm waiting for the shock to wear off.  In the 
meantime, I look at my twins, now twenty years 
old, and I thank God that I'm their mother, and 
that it's my kind of love that is raising them.





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The Benefit of a Label

	Meyshe was already seeing a speech 
therapist when he was less than three years old. 
Her name was Mary-Gage Herman, and she was a 
beacon of warmth and sanity in my world that was 
getting increasingly cold and crazy.  Day and 
night, I pondered what could be the matter with 
my boy.  Baby Boy B.  It had been a long time 
since his ears had uncrinkled.   A lot of things 
expand and change shape after birth.  They are 
all scrunched up in there and when they come out, 
they can assume their true forms, like 
butterflies coming out of their chrysalises. 
They need to dry,  swell to their proper sizes, 
proportions, practise moving the moveable parts, 
acquire their beauty and dignity.

	Meyshe was not growing up right, part of 
the post partum expansion process.  In the 
meantime, of course, there was Feyna, the twin 
sister, growing up at her own pace, heavily 
influenced by the behaviour of her twin brother. 
They were a unit.  She brought him out of his 
hermetic seclusion to learn the world of 
communication and human interchange.  Without his 
sister, I wonder what would have become of him. 
Would he have been completely closed off?  Would 
he have limited himself to counting his own 
fingers and toes, listening to the quiet or the 
racket inside his own head?  Would he have come 
to know the necessity and the joy of 
communication?  Without Feyna's constant contact 
and unity with Meyshe, would she have developed 
more swiftly, along with her contemporaries? 
Would she have been burdened quite so much with 
the social behaviours borrowed from her brother? 
These are questions that are posed knowing that 
there will never be answers.

	It was Mary-Gage who recommended that we 
seek a full developmental evaluation at 
Children's Hospital in Oakland.  I made an 
appointment with them.  We brought him in.  They 
tested him every which way.  There were two 
administrators of the tests.  There was a doctor 
Brad Berman, a warm, effusive, animated man, and 
there was Susan Johnson, a business like, 
impassive, distant woman who must have 
interpreted her coldness as objectivity.  Each of 
them was to come up with a report.

	Brad Berman showed Meyshe blocks, leggos, 
building toys.  He didn't pay much attention to 
them.  Berman was sweet to Meyshe, patient and 
affectionate.  Meyshe returned the compliment, 
rose from his position on the floor with the 
leggos to go to Dr. Berman and give him a little 
kiss.  Later, this showed up in his report as, 
"social promiscuity".

	Susan Johnson put Meyshe in a room with a 
huge doll house, and a number of tasks he needed 
to accomplish, given certain prompts.  She sat 
still, not leaning toward her young client, nor 
giving him any social feedback.  She was a 
cardboard cut-out.  She gave Meyshe no cues that 
he was right or wrong on his tests.  An 
unidentified and un-introduced woman sat on a 
stool taking notes and observing.  She made no 
contact with anyone, and Johnson made no contact 
with her.  It was bizarre really, to have this 
unidentified writing object present, but not 
spoken to or about, as if she were a mannequin. 
Meyshe did not cooperate with Susan Johnson.  He 
had had enough of her, and all the testing.  He'd 
been there being manipulated through activities 
for two and a half hours.  He went over to the 
wall switch and turned off the light.  Johnson 
turned the light back on.  Meyshe got up and 
turned it off again.  They went around with this 
a few times before she threw up her hands and 
gave up on him.  In her report, Meyshe was, 
"socially unaware".

	I couldn't have disagreed more.  His 
turning off the light was an eloquent, even 
poetic, way of communicating his opinion to Dr. 
Johnson.  He was exquisitely socially aware.  I 
found Johnson lacking in social awareness.

	A week after all this testing, both of 
the doctors came up with their reports.  They 
contradicted each other.  Which was it?  Socially 
promiscuous or socially unaware?  Which was it? 
Rigid ritualistic behaviour, or disorganized 
relations with no regard to structure?

	They brought us into a room where each of 
us sat in a chair facing them.  Behind them was 
an indoor wall with a large wide reflective 
window in it.  This was obviously made to be a 
one way mirror.  There were likely trainees on 
the other side of the window taking notes on our 
behaviour and reactions.

	"Well, I know you said you didn't want 
just a label, but here it is.  Meyshe has a 
condition known as, 'Pervasive Developmental 
Disorder,' or 'PDD'."

	This sounded awful.  What was it?

	"Some of these kids grow up to be fairly 
normal, but socially awkward.  Some of them grow 
up to be profoundly dysfunctional, unable to 
negotiate social interactions or take their 
places, unassisted, in the world of normal 
people.  This must be hard for you to hear."

	I sat, stunned.  My boy, a three 
dimensional, mysterious combination of abilities 
and disabilities had been reduced to an official 
diagnosis.  Pervasive Developmental Disorder.  I 
went home and looked it up in the big book of 
psychiatric diagnoses, the DSM.  Under Pervasive 
Developmental Disorder there was a mile long list 
of symptoms.  If the subject exhibited seventeen 
or more of these symptoms, then he or she 
qualified for the diagnosis of PDD.  All right, 
so PDD was a trash bin of possible behaviours. 
What it really meant was, "We don't understand 
these people, and in fact haven't the foggiest 
notion of what it all means, but it needs a name 
and number for insurance purposes, so it's PDD."

	I was enraged.  But I was also deeply 
affected, depressed, worried.  Suddenly my boy 
was a desperate situation.  And the doctors who 
evaluated him had no ideas about what to do with 
Meyshe.  They just dropped their label and ran. 
I wept to Mary-Gage Herman and she gave me the 
best piece of advice that I ever got from any one 
who ever evaluated Meyshe, worked with Meyshe, 
studied Meyshe, tested Meyshe or taught him.

	She said, "Tobie.  Don't pay any 
attention to the labels.  Just do what works."

	I have lived by that credo with both of 
my twins, in and out of crises, in triumph and 
defeat.  It has always kept me focussed on what 
is important and allowed me to discard what is 
unimportant.  This is my formal thanks to 
Mary-Gage.  She saved a lot of lives.



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-- 




Tobie Helene Shapiro
Berkeley, California   USA

tobie at shpilchas.net