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Special child brings joy and frustration

Andrea Wilson sits at home with her five-year-old daughter Jonnie Wilson, a victim of tuberous sclerosis. Jenny Walling / LTN Photo

Raising a child with mental retardation can cause moments of both frustration and joy.
Andrea Wilson, the mother of a 5-year-old daughter with tuberous sclerosis, has learned to take the good with the bad.
“I try not to treat her differently, even though I know she’s different,” said Wilson, the mother of four girls.
Wilson’s daughter, Jonnie, has had seizures since she was 6 months old due to tubors in her brain. The tubors also caused mental retardation and autism.
Since her child’s diagnosis, Wilson has worked towards providing a relatively normal life for her special needs child.
Legally, Jonnie could stay at home under parental supervision and have a tutor for an hour a week, said Wilson.
Instead, Jonnie attends a special needs class at Battleground Elementary School.
“I want her to be around other kids,” said Wilson. “She has that right.”
Finding out information about a mentally handicapped child’s day is not as easy as asking them about their school over dinner.
Teachers slip information into Jonnie’s backpack to send home.
They also keep a daily log stating Jonnie’s behavior for the day. Wilson uses the daily log as well to tell teachers about changes in her daughter’s medicine.
When Jonnie gets out of school she becomes the center of her mother’s attention. Unlike other children, Jonnie doesn’t want to sit still and watch television or color.
Her sisters sometimes take turns playing games with her to keep her entertained.
“She likes to play ring around the rosy and patty cake,” said Christy Wilson, Jonnie’s 8-year-old sister.
The family’s oldest daughter, Mary, acts as a “mother hen” to Jonnie, said Wilson.
The girls have learned that Jonnie’s condition makes her special.
“She gets 95 percent of my attention when everybody’s at home,” said Wilson.
Wilson has sat down with her other daughters to make sure they understand why Jonnie needs so much of her time.
“I guess she does give a little more attention to Jonnie because she does need it,” said Mary.
At school Jonnie has a one-on-one caregiver to take care of her. Even so, reports still come home about tantrums and time-outs.
Wilson doesn’t see the tantrums at home.
“Here at home, she knows what she can and can’t do,” Wilson said. “At school she’s testing.”
When out of school, Jonnie is rarely taken care of by anyone outside of her nuclear family.
“There’s just not a lot of people that know how to handle her,” said Wilson.
Jonnie’s caretakers have to deal with more than tantrums. They also have to know how to stop her seizures by running a magnet across her Vagel Nurse Stimulator (VNS).
Like a pacemaker, the VNS was put into Jonnie’s chest through an operation.
Since she has had it, Jonnie’s seizures have lowered from clusters of 20 to 25 seizures 15 to 20 times a day to two to three seizures a day. by Sarah Grano

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