Another Day, Another Challenge
By Marjorie Strebe, Guest Blogger
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.
“Well we have three hundred. Don’t tell us about kids. Believe me, we know about kids.”
On September 9, 19192, 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 doctors and paramedics, police officers and firefighters. 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 for her. Yet, our main concern was not the emergency personnel rushing to her aid, but the strangers she enlisted to call them. Children with Williams syndrome are unbelievably friendly and they love new faces. I greatly feared that she would bang on the door of someone dangerous.
The older she got, the more supervision she required, so I could no longer allow her outside alone. As she moved into adolescence, she always found a way to get hold of an unguarded telephone to phone the crises center.
“I have a knife.” They dispatched the police.
“I’m going to kill myself.” They dispatched the police and a rescue squad.
Several times, Michelle woke me in the middle of the night. “Mom, the police are at the door. They want to talk to you.” They’d responded to her middle-of-the-night phone call.
In 1988, Michelle was diagnosed with Williams Syndrome (WS), a genetic disorder that most physicians had not heard of at the time of her diagnosis. She functioned higher than she tested, yet far below her peer group. She struggled in all her academic subjects, yet she displayed proficiency in the use of electronics. She easily navigated her way through the Internet but found it difficult withholding personal information from strangers she emailed. On the more severe end of the spectrum, she 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 she created. Yet, Michelle’s story serves as a reminder that there’s always help available. It’s just a matter of finding it. Another Day, Another Challenge 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 speak 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 25 years after her diagnosis, few people are aware of the disorder. 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 other 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 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 give it to her. She was a challenge I could no longer cope with alone. Another day; another challenge!
For more information, visit my website: www.marjiestrebe.com
Another Day, Another Challenge is available at Tate Publishing or Amazon.com.
I want to thank Marjie Strebe for sharing her heart’s concerns with this audience. Having a special needs child is difficult when there are resources to help, but having to “go it alone” is difficult. We need to approach each other with hearts of compassion and arms of love if any of us are to tread through life’s problems. Just sayin’.
Cleo Lampos, author of Diamonds in the Tough:Mining the Potential Every Student