Luling teen faces each day through the eyes of Tourette’s syndromE and St. Charles Parish is on a mission to help families like his by putting a spotlight on the disease
Alexandra Schmaltz, a Luling resident and mother of two, has helped her son Logan through the stages of Tourette’s syndrome for the past 15 years.
And she says families with loved ones who suffer with the illness need help, support and understanding from the community.
“At one time, Logan was on 408 pills a month,” Schmaltz says. That’s because Logan was taking 8.5 doses of pills at night, 6.5 in the morning and 2.5 doses of medication in the afternoon everyday just to cope.
“But his medication doses have decreased dramatically and that’s a good a thing.”
Schmaltz says she doesn’t think the pills really work for Logan.
“He’s down to about 7 pills per day now,” she said.
Schmaltz remembers when she first noticed that there was something different about Logan and the day she got the diagnosis of Tourette’s syndrome from his doctor, which altered their lives forever.
“When Logan was a baby, I noticed he was more active than other children, but not in the same way other babies were active,” Schmaltz, said. “He did a lot of rocking motions, jerking and noise making, and he hardly kept still.” Schmaltz says she noticed Logan was different when he was just four months old, but since he was her first child, she just assumed that was just “his way.”
Schmaltz says the disorder effects every area of her son’s daily life from something as simple as dressing himself and boarding a bus to attending school everyday.
“As he got older, maybe around a year, I noticed how he’d blink his eyes and he was tensing up and squeezing his fist,” she said. “His body movements would be really stiff.”
Schmaltz noticed other things that were different about her child.
“His other behaviors mimicked what parents might call the ‘terrible twos’ in children,” she said. “But between kindergarten through his third grade years in elementary school, his behaviors got worse and he was tested for different things.”
Logan’s pediatrician ran several tests and told Schmaltz that her son was at the beginning stages of behavioral problems.
“They said I should monitor his behavior and keep a journal,” she said. “They said he needed behavior modifications to help him cope with things.”
Schmaltz says Logan wasn’t officially diagnosed with Tourette’s syndrome until he was older.
“Logan was about 11 or 12 years old when he was fully diagnosed with Tourette’s syndrome,” she said. “He does have the outbursts associated with the illness and he can use some foul words at times.”
But Schmaltz says she’s given him some other words to use as an alternative during these outbursts.
“He does a lot of grunting and sometimes screaming, but he really tries to hold it back by physically keeping his lips closed,” she said. “It’s very difficult to watch him go through this.”
Schmaltz says she’d like to see more compassion where the doctors are concerned.
“I’d like more help with monitoring Logan and keeping track of all of these different behaviors, but not as an inpatient in a hospital,” she said. “I want something more on an outpatient basis to help him cope with his illness and just be able to function better from day to day.”
Schmaltz says what normally takes other people 20 minutes to do, takes Logan about an hour. And Logan has to have a stress free environment with lots of routine to help control the outbursts from the illness.
“I have to stand over his bed for about 15 to 20 minutes just to wake him up, and it’s because of his medications,” she said. “I have to help dress him and get cleaned up.”
Schmaltz says because Logan is so lethargic she has to bathe him and brush his teeth.
A conference sponsored by Bayou Land Families Helping Families, designed to educate parents about Tourette’s syndrome will be held at the West Bank Library in Lakewood on April 25, from 9:30 a.m. to 12:30 p.m.
Karen Scallan, support for coordinator for the organization says one of the most difficult things parents of children with neurological disabilities like Tourette’s Syndrome and their children face is the lack of understanding from others.
“We still haven’t reached a point in our society where we accept people with neurological difficulties like Tourette’s syndrome, Obsessive Compulsive Disorder, or ADHD,” she said. “We look at kids with cognitive disabilities and say ‘oh they’re so cute,’ and we’ll help a child in a wheel chair get through a door, but when a legitimate neurological disability influences behaviors in a child or adult beyond their control, we are still very intolerable.”
Scallan says some people tend to believe they’re doing things deliberately.
“The fact is, tics experienced by people with Tourette’s syndrome are beyond their control,” she said. “Sometimes they may be able to hold it in for a very short time and they might be able to mitigate a little by keeping stress to a minimum and getting enough sleep, but the tics will never go away.”
Scallan says punishing a child with Tourette’s syndrome for ticking is like punishing a child who has no legs for not walking up a set of stairs.
Scallan says the public needs to learn more about this disability.
“What we must do is learn more about Tourette syndrome and other disabilities,” she said. “We need to learn how to help children mitigate their tics as best they can, but understand they still won’t be able to stop,” she continued. “We can have compassion and understand their lack of ability to control when and what happens with their own bodies.”
Scallan believes the education system must work with the child’s disability to help the transition be favorable in the classroom.
“We must integrate that child’s abilities into the classroom and school and focus on that,” she said. “We must seek out ways to include them and have other children in the class see them as more alike than different from other kids in order to help preserve their esteem and confidence.”
Scallan says this will also instill tolerance in our future generations and help the child with Tourette’s syndrome or any other disability keep from being a target for bullying.
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