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why the couple could-
For 25 years, Fialka
n't simply accept
worked in the field of
Micah, as one social
adolescent health care.
worker put it, "as a
In the early 1990s, her
happy child."
professional and per-
"We had known
sonal lives came
that Micah's develop-
together when
ment was delayed,"
Congress passed legis-
Janice writes in the
lation requiring states
preface of her collec-
to provide services for
tion. But when he was
special needs children
4, doctors told Janice
0-3 years old, empha-
and husband Rich
sizing the involvement
Feldman that Micah's
of their parents.
condition was "signifi-
In the wake of the
cant and permanent."
new bill, Fialka's work,
"We left the meeting
especially her articles
Janice Fialka and Rich
... walked to our car,
about
being Micah's
Feldman, with Emma and
and sobbed."
mom,
did not go unno-
Micah.
Fialka wrote letters
ticed. At a 1993 confer-
of desperation to
ence in Ann Arbor con-
many experts searching for someone
cerning the new legislation, Fialka was
who understood what she was going
asked to give the keynote address.
through.
People came up to her after the
One response still brings tears to
speech to share their stories, some in
her eyes. Patti McGill Smith, a pio-
tears. Others invited her to speak at
neer in the field of children with spe-
future conferences.
cial needs, called Fialka. Smith wanted
"It was like a calling," she says.
her to know she was not alone. "You
Soon, Janice met Dr. Karen Mikus,
will grieve and feel sadness," she said
"who had a similar passion to under-
over the phone, "but you will have to
stand this parent/professional relation-
rebuild your dream and there's a new
ship." In one week, they wrote the W.
dream to build." Smith's words proved
K. Kellogg Foundation grant, funded
true.
through the Center for Human
No one would have predicted in
Development at William Beaumont
those difficult years that Micah would
Hospital, to create their workshop for
speak at, let alone have, a bar mitzvah.
parents and professionals.
Yet, thanks to support from the
All she had learned over the years
Workmen's Circle ("incredibly signifi-
finally had a direction that filled a
cant in our lives," says Fialka), her
void for families with children of spe-
family found the special care necessary
cial needs.
for Micah's development.
In her work, Fialka explores what
"Micah enriched our lives, too,"
it's like for professionals to give par-
says Jan Adler, coordinator of the
ents "bad news" four or five times a
Workmen's Circle Sunday school pro-
day or to confront angry parents. And
gram. She and others coached Micah
she encourages parents to give experts
on his bar mitzvah project, a video of
feedback, to "let them know when
him interviewing local Jewish politi-
they've done something right." With
cians.
all the energy that goes into special
Nor would anyone have predicted
needs work and in caring for Micah,
other surprises, like the unique book-
Janice is equally devoted to her daugh-
let the counselors and campers at
ter, Emma, 10, a bright, energetic pre-
Tamarack Camps put together this
teen. Last year, the Jewish News inter-
summer. They honored Micah for
viewed Emma about her wish for the
" constant cheerfulness and great sense
New Year. "... That people understand
of humor that has brought joy to so
what the word 'disability' means," she
many of us."
said, "... that kids wouldn't make fun
"Micah will never be able to live
of people with a disability."
independently," says Fialka. But her
"We want for Micah what all par-
family is optimistic he will find a sup-
ents want for their children," Fialka
portive living and work arrangement,
explains, "a life where he finds happi-
not unlike his experience at Berkley
ness and self-worth, where he's a con-
High School, where he attends regular
tributing member of his community."
classes with supports: a curriculum
Fialka and Mikus' new book, Do
adapted to his needs and a parapro-
Yost Hear What I Hear, has just been
fessional who attends classes with him.
published by Proctor ($10). I I