Levi White cannot use words to communicate. Instead he moans, grunts, grimaces, stomps his feet and slaps or flaps his hands.
His mother and two siblings guess what he wants. If they’re wrong, the 240-pound 12-year-old has a meltdown, and no one wants that.
Levi is among the 11.3 percent of American children who have some form of autism.
“We haven’t taken him to the grocery store in over a year,” says his mother, Denise White. The last time they did go, Levi threw a fit because he passed a freezer full of pizzas and decided he would stock the cart with 20 of them.
White refused to indulge her son’s wishes, so he began a typical tantrum, dancing his feet side to side, escalating to a full-blown crying fit.
“Everybody around us just stopped and looked.”
“Autism can be so challenging,” says Julie Allison, a local behavior therapist and autism consultant with River Oaks Learning Center (riveroakslearningcenter.com), and mother to an 18-year-old son with autism.
Autism and autism spectrum disorders are neurological conditions that encompass a wide range of signs, symptoms and behavior. Most often, this neurological disorder presents significant social, communication and behavioral challenges. Developmental delays are prevalent as well.
White, who is nearly a head shorter than her preteen son, rakes her hands through her short-cropped hair as she recalls her exhaustion when trying to wrangle her 5-foot, 10-inch son out of the store.
He’s a 3-year-old trapped inside a man’s body, White says. Physically, Levi can be quite a challenge, but she manages, with the help of her teen daughter, Marian.
“All we needed was bread and a gallon of milk,” White says, recalling the incident at the grocery store more than a year ago.
Another occasion that haunts White is when Levi had a bathroom accident while out in public. “This one teenage girl said, ‘Look at that fat kid,’” Marian recalls.
People stare all the time and White gets defensive. “I just wish people wouldn’t stare,” she says.
Now the family stays home most of the time. They haven’t attended church in nearly two years, and nobody called to ask why. There are no sleepovers for 15-year-old Marian’s friends.
“We haven’t had a vacation in two years,” White adds, motioning to a photo of the family at Sea World in Florida. Levi’s longtime caregiver, a certified nurse technician, went on the trip, too, to help.
Being exhausted is just a part of White’s life, partly because of the stress of dealing with autism, but also because of her erratic schedule.
The single mother works nights as a home-health nurse. About the time she gets home from her night shift, the kids are heading off to school. She’ll catch a nap for a few hours before the kids get off the bus. Then she cooks dinner, cleans up and she might get another two-hour nap before heading into work at 10 p.m. — if she’s lucky.
Sometimes those much-needed naps are pushed aside to accommodate everyday errands. After all, she can’t take Levi. She does have to take him to medical appointments, but keeping him pacified during the time he waits to see a doctor is almost a game. Most of the time, she has to take snacks and he always carries along his portable DVD player.
Sometimes, however, nothing keeps his energy at bay. The last time she took him to a doctor’s appointment, he bolted from the waiting room and she had to chase him down in the parking lot.
He has run out of the house too many times to count, so she eventually installed a key-lock deadbolt and keeps the key with her at all times.
White also struggles to keep Levi out of the refrigerator and cabinets.
“He eats all the time,” she says.
Levi craves carb-rich food such as pretzels, nachos and cereal, and he loves cheese — lots of cheese. White laughs and says she has to hide the cheese from him. If he gets into the cheese and she tries to take it away, the preteen is likely to protest, which is difficult to stop once the tantrum has started.
Pretzels are his new favorite treat.
On a recent visit to the White family home, Levi is observed rocking gently in a reclined sofa seat in the den, nibbling pretzel sticks until the bowl is empty. He holds onto the bowl with one hand, making an “uh, uh, uh” sound as he flaps the other hand.
Still seated, he grabs a three-ring binder filled with Velcro-backed pictures from the couch, rearranges some of the pictures and repeatedly slaps the binder.
“You want more pretzels?” asks White, who is seated across the small den that is filled with pieces of a disassembled sectional sofa so it fits into the room. Daughter, Marian, is seated on the armrest next to her mother. Levi keeps twisting his wrist and slapping images in the book, which is called a picture exchange communication system. The cartoon-like pictures of food and everyday items help Levi express what he wants.
His eyes begin darting around the room and he looks up at the ceiling, continually twisting his wrist, which is sign language for “more,” White explains. White asks Marian to get her brother more pretzels. Without balking, Marian unfolds herself from the reclined position and returns with Levi’s treat.
'It's a medical thing'
Some people with autism are like Levi and may never speak. Other children with autism may eventually talk, like White’s youngest, 9-year-old James. But James’ problems are mostly manifested in a lack in social skills.
Others may have a receptive language delay, which inhibits “the language you take in,” Allison explains.
While the command, “give me your shoes,” may seem straight forward, for people with autism, that four-word sentence may be difficult to process.
“If you don’t receive that information properly, then you don’t know what to do,” Allison, the behavior therapist, says.
MTSU English professor Jennifer Kates, who has a son with autism, likens the condition to Parkinson’s disease in the respect that “something is wrong with the brain.”
“It’s a medical thing and it needs to be treated like other medical conditions need to be treated,” she says.
Those on the autism spectrum can also have other disorders, or “comorbidity,” including gastrointestinal issues, allergies and even attention-deficit disorder or manic depression. A common comorbid condition is pica, the consumption of non-food items such as dirt and chalk. The Autism Society (autism-society.org) reports 30 percent of those with autism have pica.
So far, there is no “cure-all” for autism, White says. “You just manage the symptoms.”
White’s kitchen shelves are full of Levi’s supplies, including a drawer full of prescriptions.
Levi takes medicine to help control his outburts, allergies and other physical ailments.Depakote, Celexa, Risperdal and Tenex to help control outbursts and meltdowns. After taking Risperdal, White says Levi was “a totally different kid” and behavior got better.
Meltdowns might include waving hands, screaming, crying, stomping around and pushing.
Levi’s chronic colitis, which is an inflammation of the large intestine, is treated with the allergy medication, Singulair. On occasion, he has bouts with diarrhea. Other times, he has to take Benefiber or Miralax. Prevacid is taken daily to calm his stomach.
A prescription nasal spray and Zyrtec help with seasonal allergies. To help him relax before doctor visits, which are frequent due to his medical issues, he takes Valium. At night he takes a Melatonin supplement to help him sleep, and if he needs more to get him to bed, he is given Clonidine. Every day, he takes a multivitamin.
A timer located in the kitchen helps White or Levi’s caregiver remember to give medications. Without insurance, cost for medication might be out of reach.
“Fortunately for me, I have private insurance and he also has TennCare, so both insurances together, I don’t have to put out a lot for his medicines,” White says.
Some parents go the biomedical route, using homeopathic remedies such as supplements and dietary restrictions, and even the use of hyperbaric oxygen chamber, which provides pure oxygen to breathe in hopes that the treatment can rid the body of toxins that may worsen the autism symptoms.
Early after Levi’s diagnosis, White says she tried the popular gluten-free diet, but it made him sick. He became extremely anemic and had to be hospitalized. Now she just tries to feed him as healthy as she can. He is always requesting something to eat, she says, rummaging through her refrigerator to find the ingredients for cheese nachos.
So far, there is no “cure-all” for autism, White says. “You just manage the symptoms.”
White’s kitchen shelves are full of Levi’s supplies, including a drawer full of prescriptions.
Levi takes medicine to help control his outburts, allergies and other physical ailments.Depakote, Celexa, Risperdal and Tenex to help control outbursts and meltdowns. After taking Risperdal, White says Levi was “a totally different kid” and behavior got better.
Meltdowns might include waving hands, screaming, crying, stomping around and pushing.
Levi’s chronic colitis, which is an inflammation of the large intestine, is treated with the allergy medication, Singulair. On occasion, he has bouts with diarrhea. Other times, he has to take Benefiber or Miralax. Prevacid is taken daily to calm his stomach.
A prescription nasal spray and Zyrtec help with seasonal allergies. To help him relax before doctor visits, which are frequent due to his medical issues, he takes Valium. At night he takes a Melatonin supplement to help him sleep, and if he needs more to get him to bed, he is given Clonidine. Every day, he takes a multivitamin.
A timer located in the kitchen helps White or Levi’s caregiver remember to give medications. Without insurance, cost for medication might be out of reach.
“Fortunately for me, I have private insurance and he also has TennCare, so both insurances together, I don’t have to put out a lot for his medicines,” White says.
Some parents go the biomedical route, using homeopathic remedies such as supplements and dietary restrictions, and even the use of hyperbaric oxygen chamber, which provides pure oxygen to breathe in hopes that the treatment can rid the body of toxins that may worsen the autism symptoms.
Early after Levi’s diagnosis, White says she tried the popular gluten-free diet, but it made him sick. He became extremely anemic and had to be hospitalized. Now she just tries to feed him as healthy as she can. He is always requesting something to eat, she says, rummaging through her refrigerator to find the ingredients for cheese nachos.
Levi shuffles across the kitchen to give her a bear-like hug.
The visible exhaustion on her face is replaced by a wide grin, and she smothers her son in hugs and kisses. Leaving the embrace, Levi takes his snack and shuffles from the room.
The weariness returns to his mother’s face. Her smile fades and eyes droop as she returns to the subject of autism.
“Yes, (autism) affects me,” White admits. “But when you are a mother, you prepare yourself to accept your child as they are. The child and their siblings didn’t ask for any of this. When (Levi) was first diagnosed, I was crying for him, not me, his struggles, not mine.”
Then she turns around and stacks newly washed dishes into a cabinet. She has work to do. She has to cook dinner.
She is Mom.
“The only proven method of treating children with autism is (applied behavior analysis) therapy,” Allison says. ABA therapy employs positive reinforcement. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, ABA evolved to include many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.
For instance, some tasks may be too complex for a child with autism to learn. So ABA therapist will break the task into manageable steps. If a child needs to wash hands for dinner, the activity might start with turning on the tap, done repeatedly. Then turn on the tap followed by wetting hands, and so on, until the task is learned.
“For children with autism, (life is) very black and white,” Allison says. “But this disorder is gray and confusing.”
(Source: newarkadvocate.com)
No comments:
Post a Comment