Preparing for
Michelle’s first day at a new school, I attempted to inform the staff how my
little first-grader faked illness or injury for attention, but they cut me
off.
“Mrs. Strebe, how many children do
you have?” asked the principal.
“Three.”
“Well we have
three hundred. Don’t tell us about
kids. Believe me, we know about
kids.”
…On September 9,
1992, one week into the school year, I received an urgent phone call from
Michelle’s teacher. “Mrs. Strebe,
Michelle passed out on the lunchroom floor!”
My
daughter started manipulating others before she could walk or talk. And playing sick was her favorite
pastime. She loved the attention of the
doctors and paramedics and police officers and fire fighters. She started calling 911 when she was six
years old, and it took me four years to break her of it. But that just meant she no longer called them
herself. As a preteen, she enticed
unsuspecting neighbors to place the call and as an adolescent, she always
managed to get hold of an unguarded telephone where she phoned the crises
center….
“I have a knife.” They dispatched the police.
“I’m thinking of hurting myself.” They dispatched a rescue squad.
Michelle woke
me at 2:00 in the morning. “Mom, the police are at the door. They
want to talk to you.”
This child led our family through medical battles, social dilemmas, and
obsessions galore; obsessions that brought the police or rescue squad racing to
our front door two or three times a week.
We dealt with the unique challenges of a special needs child who was
falling through the cracks of every service designed to support her needs, and
the older she got, the more problems we had with her. Yet, Michelle’s story serves as a reminder
that there’s always help available. It’s just a matter of finding it. This book not only covers the various
characteristics of WS, but it clearly shows where the system failed and how a
conscientious doctor or teacher could have improved the situation. It also gives insight as to what could be
going on behind the scenes in the home.
Williams syndrome affects different people in different ways. And while
these children deal with developmental delays and mental retardation, they
often talk very intelligently and are usually gifted in music. Yet most people
can’t see past their intelligence to their learning disability. That was one of the biggest challenges I
faced with family, friends, and the
school system. And that is also one of
the main reasons I wrote Michelle’s story; to educate people on a syndrome that
few know anything about and to help others recognize the best ways to offer much-needed
support to the family.
Another Day,
Another Challenge; the Biography of a Child with Williams Syndrome chronicles Michelle’s
life – from birth, through her diagnosis and delayed development, to the
never-ending challenges that accompanied this atypical Williams child. From her behavior challenges to a genuine
emergency; from mental illness nightmares to obsessive-compulsive behavior,
Michelle created problems for everyone around.
And
my support system offered no support. Know-it-all doctors
and school faculty viewed me as an apathetic parent while ignorant family
members and judgmental church leadership were blinded to my daily struggles. They believed that the only problem with
Michelle was her parents. In addition, we
dealt with ineffective MRDD (Mental Retardation / Developmental Disability) services. Their goal was to keep Michelle in the home,
regardless of how many times she threatened to burn it down. Michelle reached the place where she needed
24-hour supervision, and I simply couldn’t keep up with her. If I turned my back, took a nap, or went to
bed at night, she was on the phone.
But
God saw me through an incredibly difficult situation, and just like Michelle
had learned all the right things to say to force the police or rescue squad to
transport her to the hospital, God gave me the exact words that I needed to say
to force MRDD to find her a placement aside from my home.
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