For Gillian Marchenko, sending her daughters off to
preschool means more than picking out their outfits. It involves
hours of meetings with administrators, teachers and outside
therapists. And it means that Marchenko, a mother of four who lives
on Chicago's North Side, has found herself on the front lines of
Two of Marchenko's three daughters have Down
syndrome-Polina, 3, and Evangeline, 4.
Marchenko's daughters are among the more than 37,000
children between ages 3 and 5 who receive special education
services in Illinois. The number of children served statewide has
grown since 2004, when about 34,900 students received special
education. However, the number of 6- to 21-year-olds receiving
services has declined in recent years.
The Illinois State Board of Education attributes the
increase to disabilities being identified at younger ages,
including in infants, as well as increased cooperation among Head
Start, pre-kindergarten and child care programs.
Mandated under the federal Individuals with Disabilities
Education Act of 2004, an Individualized Education Program
(IEP)provides detailed and personalized curriculum for students
with special needs.
Rebecca Benson-Bates' daughter, Samantha, is one of those
children. At 4, Samantha, who has Down syndrome, currently attends
preschool. The easy part, Benson-Bates says, was enrolling her
daughter in school. After that, she faced piles of paperwork and
"They ask, 'what is the goal you want to reach for the
child? What achievements in three, six or nine months?'"
These goals form the bones of the education plan, and
they're often referenced during the school year. Samantha's goals
are designed to prepare her for kindergarten.
One of Samantha's goals, her mother says, was to be able
to take off her coat and hang her backpack on a peg every morning.
She has achieved that, her mother says, and her future goals
include pedaling a tricycle, threading beads on a string and
answering questions that use the word "who."
But creating goals requires hands-on work with schools,
and sometimes disagreements occur.
For Marchenko, this happened when the school wanted Polly,
who is nonverbal, to learn a picture system to communicate with
teachers. However, Polly already knew more than 90 signs in
American Sign Language. Marchenko didn't want to confuse her by
switching to a new system.
"They were telling me this is the way we do it, regardless
of how your child is, because that's the way it's always been set
up," she says. Marchenko pushed back, and the goals were eventually
The possibility of major disagreement is one reason
Marchenko always brings someone to support her to school meetings,
whether it's her husband or the girls' therapist.
Still, she stays positive and focuses on
Diane Kush, the principal of Chicago's Stuart G. Ferst
School, a therapeutic day school for severely disabled elementary
and high school students, says she's familiar with the tension
between parents and schools over IEPs.
She says parents sometimes want to set goals for their
children that are not realistic for their current
"There's a lot of things in between the dream of a child,
the reality of the child and the potential of the child," she says.
"I think all parents and schools operate somewhere in those three
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