At 5’2” and 87 pounds she is at least 20 lbs underweight by medical standards, but she’s only halfway through her morning exercise routine.

“When someone says, ‘I’m starving,’ or ‘I haven’t eaten all day,’ and you know you saw them have a piece of chocolate in the morning and all I’ve had was water for the past two days, it makes me enraged,” she says.

On the Internet other girls admire her profile picture. It was taken on an angle under a bright light that makes her blond hair and blue eyes almost reflective and her skin a perfect even tone of unearthly white.

She looks like an angel, they say.

But that picture doesn’t show the bald spots on Rachel’s head where her hair is falling out, nor does it show the thick hair that is growing on her arms or how cold her skin feels. It doesn’t show her brittle nails or the bite marks on her hand, the cavities in her teeth or the bruises on her body that just seem to appear out of nowhere.

For Rachel, 18, there is no upcoming event that is luring her onto the treadmill so early in the morning. There is no dress she has to fit into, no boy she is trying to impress—just the insinuation that there might be makes her very, very angry.

She’s an honor student in her first year of college, who, on average, spends more than 40 hours with a second family she has never met face to face. Rachel has been a regular member of an online eating-disorder support group for the past three years, along with more than 4,000 other members of all ages, but mostly in their teens and early 20s, from nearly every part of the world. It’s run by seven people and divided into sections by topic like “Fasting” or “Binging.”

Eating-disorder-related sites have been growing steadily over the past decade—a 2007 study by Optenet, a Web security firm, showed a 470 percent increase in these sites over the course of one year—ever since they first began appearing on talk shows like The Oprah Winfrey Show in the late ’90s.

Pro-anorexia (pro-ana) websites are those that promote anorexic behavior, where members freely exchange tips like how to purge. They are often portrayed by the media as secretive, cult-like, militant groups who worship photos of models and celebrities altered into, literally, skeletal figures; with creeds that include rules on eating similar to The 10 Commandments and a commitment to a disorder that borders on religion and rituals rivaling torture methods.

But the site Rachel belongs to “isn’t like that,” she says. It’s considered a “support group.” And to its thousands of loyal members—who are all female except for one or two men—support groups are completely distinct from pro-ana sites.

“Pro-ana sites don’t care about you,” says Rachel. “You can go there, and they will teach you how to be a great anorexic or the best way to throw up. That isn’t allowed at my site. We won’t teach you anything, and if it looks like you are here trolling for diet tips, you get kicked out.”

Support sites distinguish themselves from pro-ana sites by implementing strict rules against teaching, exchanging tips and promoting outright dangerous behaviors. And they distinguish themselves from recovery sites—sites for those trying to overcome their eating disorders—by not being judgmental, allowing open talk about eating-disorder behaviors and allowing people who may have no plans of recovery to meet others who are likeminded.

With mounting pressure from recovery sites and medical professionals, both Yahoo and Geocities now refuse to host sites they believe glamorize eating disorders. But this often doesn’t include eating-disorder sites considered support groups. Although to medical professionals and eating-disorder associations, the differences between the two are merely semantics—the difference between using the word “tips” or the word “advice”—and any real differences aren’t significant, except in the eyes of those with the disorder.

“These sites provide no useful information on treatment but instead encourage and falsely support those who, sadly, are ill but do not seek help,” the National Eating Disorder Association warns. “Media coverage of pro-ana often triggers the already-anorexic by mentioning weights and calorie counts and by showing photographs of thin people.”

We have purposely left out the names and details of the sites discussed, as well as their user names, because every person interviewed for this story found these websites through the media.

“One of the diagnostic criteria for anorexia nervosa is denial of the seriousness of the illness,” states the American Eating Disorder Association. “Thus websites that glorify anorexia as a lifestyle choice play directly to the psychology of its victims.”

But for many who visit regularly, these sites provide a special meeting place where they can find friends, all over the world, who understand them, no questions asked.

It’s the existence of these genetically modified organisms (GMOs)—some on the market, some not—that make Sarah Rogan, mother of three, visibly shaken and uneasy at the mere thought of her children eating  fast food or school lunch, whether it’s green beans or pizza.

“Never, absolutely never,” she says, clenching the handle of her shopping cart.

But many of us eat them every day, whether we know it or not. From breakfast cereals to soft drinks, hamburgers to soy milk, GMOs have worked their way into 60 to 70 percent of our food supply, and here on a Saturday morning in Aisle 7 of the Waldbaum’s in Jericho, Sarah is the only one out of the last 10 people to walk by who knows exactly what they are.

“GMO? No idea,” says Ted Cinelli, father of two. “Everything is going to kill you someday. If we listened to every last warning or what have you, we’d all starve to death.”

But Sarah and Ted have something in common. Their children were born in the ’90s, when GMO ingredients entered the commercial food supply. Sarah and Ted are raising the first generation of genetically modified kids, and what their future holds is a mystery, a tragedy or nothing to worry about—depending on whom you ask.

Generation GMO
A slew of books and documentaries have been released over the past decade focusing on farmers in the Corn Belt being bullied by big business while government agencies like the Federal Drug Administration (FDA) let it happen, or children entering puberty at extremely early ages due to hormones in dairy products. Everyone has an opinion on GMOs, from the Vatican to the local farmer. But how the issue of GMOs affects Long Island is relatively unknown to the public and something many are still trying to figure out.

GMOs have been on the market since 1996. The FDA has approved them because they originate from conventional foods and conventional foods are deemed safe, therefore, GMOs are considered safe too,  because they are “substantially equivalent.” Out of a handful of studies that either suggest GMOs are safe or dangerous, there is not one that isn’t considered by someone to be flawed, not up to scientific standards or biased. The American Academy of Environmental Medicine states, “Several animal studies indicate serious risks associated with GM food…There is more than a casual association between GM foods and adverse health effects, there is causation. GMOs have been suspected of being responsible for everything from autism and cancer to diabetes and allergies.”

Ben Cohen and Jerry Greenfield, also known as Ben & Jerry of ice cream fame, sued the state of Illinois for the right to label their products hormone-free

And since New York State doesn’t require foods containing GMO ingredients to be labeled (although there is legislation pending), GMOs remain silent ingredients.

“Going to the store, most people are going to buy milk—most milk or butter is coming from cows that have been administered hormones,” says Rob Endelman, a Wall Street trader from Roslyn turned professional organic chef who relies heavily on Long Island produce. “Most people are going to be buying bread or other items that contain corn or soy or wheat that are from genetically modified crops.”

The U.S. is the largest producer of genetically modified crops. Although genetically modified (GM) ingredients are in the majority of the food supply, only 52 percent of people realize that these foods are sold in grocery stores and only 26 percent of people believed they had eaten a GM food, according to researchers from the Food Policy Institute at Rutgers’ Cook College.

“I teach organics and when I’m presented with a class, generally speaking 90 percent don’t know what GMOs are,” says Ian Steiber, a Long Island organic consultant.

Why are so many people in the dark when it comes to GMOs? Well, since the FDA’s stance is GMOs do not differ “in a meaningful or uniform way” from non–GMO derived crops, the government considers this information a non-issue.

And so far on Long Island, it is a non-issue, at least as far as our exposure to them goes. In Nassau and Suffolk counties, exposure to GMOs comes primarily from fast foods and processed foods, not fresh fruits and vegetables.

The “sweet local corn” signs that line the roads out to the Hamptons mean just that—conventionally grown local corn that has been crossbred for hundreds of years to become the corn we know today.

But in the Midwest, where millions of acres of field corn are grown, farmers aren’t so lucky. Field corn is different from sweet corn in that it is cultivated for animal feed, corn syrup and additives that are used in processed foods. This type of corn is subsidized by the government and is mostly made up of GMO varieties bred to withstand pesticides. The most well-known and prevalent is Roundup Ready Corn, manufactured by the agricultural biotech company Monsanto, the biggest and most controversial player in the industry. The GMO seeds are meant to be used along with Roundup, a pesticide Monsanto also owns.

“Corporations suck them into the credit line to buy the seeds, the sprays, the equipment and they keep them on a treadmill that way,” says farmer Steve Storch, who runs Natural Science Organics at Larry Halsey’s Green Thumb organic farm in Water Mill. “The land isn’t worth anything so what is their equity? The farmers here have too much money for that.”

The seeds are available to Long Island for those who want them, but since corn, soy, cottonseed, wheat and sugar beets— the five main GMO crops—aren’t widely produced on Long Island, GMOs are rarely found on local farms. However, technology is moving along and options are growing. Currently in the works are patents for AquaBounty’s GMO salmon that would grow at twice the normal rate and Monsanto’s GMO pigs. But for all the promises technology offers, GMOs pose even more doubts.

Seeds Of Change

Students at The Waldorf School of Garden City Harvesting Vegetables from the school garden

GMOs don’t only apply to food. Poplar trees have been genetically modified to clean up pollution from contaminated soil. Modified genes are being studied in the medical world as possible therapies.  As for food, GMO’s offer year-round fresh produce. The first GMO to hit Long Island was the Flavr Savr tomato.

During the winter, tomatoes grown in southern states are picked while green and shipped up north to snow-covered areas like Long Island. The tomatoes are ripened in containers filled with ethylene gas.

“They gas them to make them turn red,” says Melville farm-owner Bob Schmitt, whose family has been in the Long Island farm industry for more than five generations. “They look like a tomato in the wintertime, but they are really just a piece of cardboard.”

This is where GMO technology comes in. By isolating a trait to keep the tomatoes firm, the fruit can be crafted to ripen but not soften as quickly as regular tomatoes—and not taste like cardboard.

There are also environmental benefits with certain GMOs, Schmitt says. Atrazine, a popular herbicide widely used across the country for decades, was found to build up in the environment and pollute groundwater. Atrazine has been phased out as it has been replaced with less environmentally toxic herbicides the GM plant has been engineered to tolerate, like Roundup.

“It’s not something that gets into the water, it’s not something that gets into the air,” says Schmitt. “People spray it on their sidewalks, on their driveways; kids walk over it. You don’t have to keep your kids in the house for four or five days.”

Those against GMO crops say this only makes it easier for farmers to use extra chemicals, knowing it won’t damage their plants.

But while Schmitt does not use GMO crops, he isn’t against the technology altogether and says there is a bigger picture people often miss.

“There is so much that GMO technology can do for mankind,” he says.  He cites Golden Rice, a GMO crop created by the Swiss Federal Institute of Technology in 2000 that was introduced as a possible solution in combating Vitamin A Deficiency (VAD). At the beginning of the 21st century, an estimated 124 million people in Africa and South East Asia were affected by VAD, which resulted in up to 2 million deaths and hundreds of thousands of cases of irreversible blindness, according to the World Health Organization.

“I’m not promoting it or talking [GMOs] down,” continues Schmitt. “It’s just that people don’t understand it.

“We have plenty of food here, so we  can very easily sit in this country and talk with our mouths full. But not everyone around the world has that luxury, and when you have starving people around the world, that’s where the biggest future for GMOs is—and I don’t mean next year, but 10, 20, 50 years along the road—for parts of the world that have to depend on other countries for their food supply to be able to feed themselves.”

Waldorf cafeteria chef Aviva Gill preparing fresh, organic vegetables

Although GMO crops have their negatives and positives, another kind of GMO doesn’t have a silver lining. It’s also possible to modify animals. In fact, all milk and dairy products in the U.S. have artificial hormones—rBGH or recombinant bovine growth hormone—unless the label states otherwise.

Raging Hormones
“We’re here to announce today that we are suing both the city of Chicago and the state of Illinois over our right to give you truthful information about what’s not in our ice cream and frozen yogurt and about your right to know,” Ben & Jerry’s co-founders Ben Cohen and Jerry Greenfield, who both grew up in Merrick, announced at a news conference at the Lincoln Park Whole Foods Market in Chicago on the morning of May 7, 1996.

At that time, the government began requiring that in order for dairy products to be labeled hormone- or rBGH-free, this statement had to be added to the label:

“According to the FDA no significant difference has been shown between milk derived from rBGH-treated and non-treated cows.”

The decision to add this sentence was decided by the FDA’s deputy commissioner of policy, Michael Taylor, previously Monsanto’s attorney who, after his FDA gig returned to Monsanto as vice president. Taylor is the same government official who declared, on behalf of the FDA, that GMOs were safe and required no further testing.

Monsanto is the sole manufacturer of rBGH, marketed under the name Posilac. When injected into cows, Posilac forces each animal to produce 10 percent more milk per day.

Taylor’s appointment to the FDA is part of what Storch and many others call a revolving door between Monsanto and government agencies, whereby many Monsanto higher-ups have moved on to government positions, and vice versa.

“If [Monsanto’s] product was on the up-and-up, then why did they go through such a backhanded approach?” adds Steiber.

But back in 1996, Ben and Jerry refused to give in to either party. Since each state in the U.S. has jurisdiction as to whether a hormone- or rBGH-free label is allowed on a product at all—and Illinois was one of four states that decided it wasn’t—it meant that despite the FDA approval, Ben & Jerry’s could not include the label on any of their products, as it was not possible for them to produce a different package for a portion of their consumer base.

In a settlement later that year the parties agreed to specific labeling.

Why all the fuss?

Many believe there is a link between rBGH, cancer and early puberty, most notably Dr. Sam Epstein, chairman of the Cancer Prevention Coalition and author.

“Monsanto and the [U.S. Department of Agriculture] insist that rBGH milk is indistinguishable from natural milk, and that it is safe for children and other consumers,” he said in a statement. “This is scientifically and medically untrue…Of major concern is a wealth of long-standing scientific evidence incriminating [excess levels of hormones] as delayed causes of breast, colon and prostate cancers.”

A new study released this month in the medical journal Pediatrics found that girls are more likely today than 10 to 30 years ago to start developing breasts by age 7 or 8—which could be a sign of hormone exposure. But there is no definitive proof published in scientific literature that links cancer or early puberty to the intake of dairy products.

That’s Not My Job
“The reason we are here today is because the 1992 White House chose to fast-track genetically modified foods and crops at the expense of science,” said Jeffrey Smith, executive director of The Institute for Responsible Technology, in testimony before the Environmental Protection Agency on May 22, 2007.

“Not wanting Congress to intervene and pass new laws that might slow down approvals through extensive testing and evaluation, they cobbled together a regulatory framework based on existing laws that were ill-equipped to handle the harmful and unique risks of this new technology,” said Smith. “The strange malady of passing on the responsibility to others has befallen too many regulatory agencies in regards to GMOs, and when it is traced back to see who is ultimately providing assurances, it often turns out to be the biotech companies offering assumptions that promote profits.”

Monsanto denied Smith’s allegations and all of the other criticism it has received, and hires their own scientists to review any negative studies, which, so far, have all been  deemed “flawed” by the company.

One such test conducted in 2008 by Dr. Jurgen Zentek, professor for veterinary medicine at the University of Vienna, found preliminary negative effects of GMO corn on the organs of mice. Monsanto quickly had their own people review the data.

“These products have been proven to be safe,” said Jerry Hjelle, Ph.D., vice president of Monsanto’s regulatory group in a statement. “This report does not provide any basis to conclude otherwise. Activist groups for years have attempted to call into question the safety of biotech crops. They have made multiple allegations based on data taken out of context and lacking rigorous scientific review. These have ultimately failed to be substantiated.”

“If you say anything about Monsanto, they come down on you pretty heavy,” says organic farmer Steiber.

Down To Business
It’s not so much the direct health effects that worry Long Island Seed Project Director and Suffolk Community College Professor Ken Ettinger. It’s the fact that the food supply is being taken over by corporations—specifically the largest, Monsanto—and their increasing domination of it.

Take the Terminator Gene, or suicide gene, for instance, that renders future generations of plants infertile.
“Oh gosh, that’s like a nightmare,” says Ettinger. “Usually I’m so impressed with technology but I’m also very apprehensive. What’s really amazing is part of the patent that is held by the Terminator Gene is by our own U.S. Department of Agriculture.”

Monsanto has publicly declared that it wouldn’t release the gene, but the technology exists and the consequences of it getting into the environment are a mystery.

“Many farmers save the seed from one generation to the next and the Terminator Gene is a terrible ploy that doesn’t allow you to do that,” says Ettinger. “You’re basically at the mercy of the corporate entity, whoever is marketing the seed, and you have to go back to the company for the seeds. And often for the herbicides and the fertilizers and whatever other chemical controls  the company wants to sell you—it’s purely for profit.”

For now the Terminator Gene is a dead issue, but GMOs still worry Ettinger.

“It’s very difficult to imagine the problems that might come from that technology,” he says. “There is just no history in the world of having that kind of manipulation. When you’re inserting the genes from other organisms—you know, a flounder into a strawberry or bacteria into corn—there’s just nothing in the agricultural record like that for the thousands and thousands of years that we’ve had agriculture.”

Then there is the issue of ownership and cross-contamination.

“The cross-contamination of GMOs to heirlooms, that’s a concern to organic farmers,” says Steiber. “I had heard a story about a window washer in NYC. Pollen was showing up on skyscrapers from the Midwest.”

Since 1997, Monsanto has sued 144 farmers over patent infringements. They have won every  case.

One of the most famous cases involved Canadian Canola Farmer Percy Schmeiser whom Monsanto successfully sued after unlicensed Roundup Ready Canola was found growing on a large portion of his farm. Schmeiser claimed it was due to cross contamination by wind-blown pollen and has been heavily involved in the anti-GMO movement ever since.

“The truth is, Percy Schmeiser is not a hero,” Monsanto said in a statement. “He’s simply a patent infringer who knows how to sell a good story.”

But regardless of the outcome, regardless of the potential positives and negatives related to GMOs, regardless of the supporters and the dissenters, the fact that a corporation has so much power over the food supply leaves Ettinger, and many others, uneasy.

“They are just so profit-oriented and they’ll do litigation just to make sure nobody is benefiting from their technology,” he says. “It just doesn’t seem like seeds to feed the world ought to be the property of a corporation. That bothers me—a whole lot.”

A vending machine from MyHealthyThing, a Huntington-based company that supplies schools with healthy, natural and organic snacks with gluten-free and vegan options

In The Schools
Despite the uncertainty and varying opinions over GMOs, more and more schools on the Island are trying to go back to basics, which allows them to bypass the issue altogether and eliminate the processed foods that are the biggest sources of GMOs.

“We are very interested in getting GM foods out of schools,” says Luisa Giugliano of the Sea Cliff School Nutrition Committee. “It’s a really hard road. I think schools for so many years have gotten used to receiving these big, nearly free commodity foods, and it’s hard not to be dependent on them.”

The Commack School District has eliminated GMO foods, including sodas, from all their schools.

“It’s a district-wide effort,” says Brenda Lentsch, Commack School District spokeswoman. “It’s a really intensive policy to encourage a healthy lifestyle, healthy habits.”

But it’s not an easy transition to make, especially for financially strapped districts.

“They’re really limited,” says Wendy Mikkelsen of Huntington, founder of MyHealthyThing, a healthy and GMO-free snack-vending-machine company. She supplies refrigerated vending machines to schools across the Island that offer organic Pop-Tart alternatives and fresh fruits and vegetables. “Everybody wants healthier foods for the kids but it’s costly, and I think they’re really challenged to juggle getting healthier foods without raising the prices. I mean, could you really get a healthy lunch for $2 out in the world?”

The Waldorf School of Garden City has perhaps the most intensive program of all, but it didn’t require a conversion from a traditional school menu to something entirely new. Students have grown their own vegetables, used in school meals, since the school’s beginnings. They also get food delivered from their extension campus, a farm in New Hampshire.

“It’s something that is so vital in their lives,” says Robert Ingenito, Director of Communications for The Waldorf School of Garden City. “They see where the food comes from. It’s not just the grocery store, it’s food that comes from a natural farm, and they get to be a part of that process.”

But Mikkelsen says oftentimes the opposite is true in public schools. She says at one district meeting she asked if a certain label met the criteria.

“They said no, that it had too much sugar.”

It was a banana.

“So a banana doesn’t meet some of the criteria at some of the school districts. It’s crazy.”

But Mikkelsen says the ground is ripe for change and people are starting to investigate things for themselves and rely less on assumptions about the food they are eating.

“We think, ‘Oh, it has a friendly face,’ but it’s really up to us to do the research because the big companies aren’t going to do it for us,” she says. “There doesn’t seem to be a general consensus on what healthy means. Everyone has a different take on it. But there’s got to be a reason why all of a sudden there is this epidemic of ADHD or autism and diabetes, and the more you read, the more you question our food supply and what it is the government is doing to our food supply, to help the regulations fit what somebody is making money on. There needs to be more information about what all of this is and also on those who are giving out that information.”

And with so many opinions and little accepted data, it’s even harder for the public to make informed decisions about GMOs when there is so much contradictory information on its safety. Opinions aside, we are eating GMOs every day and what the consequences—or benefits—are, only time will tell.

“It’s a science that is here, and many people fear it,” says Melville farm owner Schmitt. “We all fear the unknown. There’s such a high percentage of food in this country that has some GMO technology. You can hinder it, but it’s there. Whether I like it, it doesn’t matter—the train has already left the station.”

By Rashed Mian and Christopher Twarowski

Part 30 of our award-winning series “Our Children’s Health”

For Jamie Isaacs, the torment began in second grade at Wenonah Elementary School.

A group of girls would repeatedly yank her hair and stab her with sharpened pencils. Sachem Central School District officials did nothing to stop the abuse, her family alleges.

Starting in 2003, the bullying intensified throughout the next six years, with the attacks escalating in their viciousness. More children joined in. By the fourth grade Isaacs was receiving harassing phone calls and threatening instant messages (IMs) declaring the bullies were going to break into her Lake Grove home and kill her. In fifth grade, even one of Isaacs’ teachers started calling her names, her parents charge.

Soon after entering Samoset Middle School, Isaacs learned of a hate club against her with the collective goal of pain or death. The following year saw 22 children—both boys and girls—stealing from her, threatening her on a daily basis, breaking into her locker and sabotaging school projects. The online threats via e-mail and chats turned sexual. The bullies also turned against her younger brother.

Again, Isaacs’ parents say school administrators and the police did nothing. In some cases, school officials actually threatened and harassed the family, they allege. Eventually, Isaacs’ parents say, school officials told them there were just too many bullies involved, there was nothing they could do to help, and suggested their daughter would be better off at a private school. The family has several pending lawsuits against the district.

Requests for comment for this story from Sachem Central School District’s superintendent were responded to by its PR office, which sent a statement that included:

“The [district] has a zero tolerance policy on bullying. The District implements many programs each school year to teach anti-bullying and tolerance in the elementary, middle and high school levels.

“The District cannot comment on individual cases due to student privacy laws and ongoing litigation.”

Isaacs, now 14 and an A-plus student at The Knox School (which also has a zero-tolerance policy toward bullying), is just one of countless children across the country who suffer the brunt of bullying, an age-old process of victimization ranging from name-calling to physical assaults to alienation by peers both in and out of school. The rise in popularity and accessibility of the Internet, social networking sites and cell phones among youths, however, has transformed the unfortunate hazings into relentless, public brutalization—known as cyberbullying—that follows its victims out of the schoolyard or cafeteria to anywhere there is Internet access, and in some cases, may have resulted in the deaths of their targets.

The January suicide of 15-year-old Phoebe Prince of South Hadley High School in Massachusetts grabbed global headlines and sparked cries for tougher laws against bullying. Prince had been the subject of relentless bullying by fellow students—and the attacks didn’t end with her death. Bullies continued their assaults on the wall of her Facebook memorial page. On Long Island, cyberbullies also relentlessly attacked the Facebook and Formspring pages of 17-year-old Alexis Pilkington, of West Islip, following her suicide in March.

These cases, as well as Isaacs’, inspired Suffolk County Legis. Jon Cooper (D-Lloyd Harbor) to propose local anti-bullying and cyberbullying legislation that would hold perpetrators—including school teachers and administrators who do not act against such instances—accountable.

Isaacs stressed the need for such laws at a May public hearing before the county legislature. She was joined by her parents Ron and Anne and a slew of other families whose children had also suffered at the hands of bullies.

“I’m 14 years old and I’m a survivor of bullying,” she told lawmakers. “I am here standing in front of you today because of the love and support of my family. I’m alive while other kids are dead because of effects that bullying had on them.

Speaking Out: (L-R) School watchdog George Deabold, Anne, Ron and Jamie Isaacs of Lake Grove, and Attorney Mitchell Carlinsky testified before the Suffolk County Legislature in support of a bill to hold school administrators accountable in instances of bullying.

“This bill represents justice,” she continued. “Let me be the example of hope for all the kids that may think that their hope is gone.”

The county legislature recently adopted Cooper’s anti-cyberbullying and cyberstalking bills, which make cyberbullying a minor and/or cyberstalking an adult both misdemeanors punishable by $1,000 fine and/or up to a year’s imprisonment. Following fierce opposition from school administrators and teachers, Cooper withdrew a third bill—to be named “Jamie’s Law,” after Isaacs—aimed at holding them equally accountable.

In its place, Cooper has proposed the establishment of an anti-bullying task force comprised of local and state lawmakers, law enforcement officials, school administrators and others to study the issue and develop reform recommendations for the various entities.

Outside the Law

The statements read like the mad ramblings of a serial killer:

“u dumb fuck ill kill u”

“u have no life ur an outcast and that’s all u will ever be”

“I’m gonna fuck u up so bad nobody’s gonna recognize your babyface fucking bitch”

“ill fucking send you to your grave bitch”

“u fuckin ritard I’m going to kill u”

They are, in fact, IMs from one 13-year-old Suffolk County middle schooler [whose name, school, town and victim’s identity have been intentionally left out of this story to prevent any more abuse] to another 13-year-old Suffolk County middle schooler. And there are pages of them.

Seated opposite his mother at a small rectangular table in the kitchen of their home, the victim [we’ll call him Connor], a skinny, lanky-framed teenager, gives short, abrupt descriptions when sharing his current ordeal with the Press.

He walks through town always looking over his shoulder. He’s not scared, just nervous, not knowing what slur would be screamed at him next or who may be lurking behind him, ready to pounce.

He’s suffered a year of bullying at school and cyberbullying that began when he moved to the new district with his mom and two siblings last year.

According to his mother, the bullying started during the school’s homecoming football game. A group of kids confronted the 13-year-old, ready to fight. There had been a cell phone text message circulating among students earlier that week that Connor was going to get beat up. He had no clue.

One bully brandished a knife and sliced the seat of Connor’s bicycle, ripping out the foam and carving his name into the paint. The group then launched it off the side of a steep hill, repeatedly.

“They circled me,” Connor tells the Press. “They kept taking my bike and throwing it down.”

Connor sheepishly shows what’s left. Holding what now resembles a mangled metal pretzel up in the air, the only segment of his bike remaining is its frame. The seat is long gone. So are the gears. The pegs once screwed into its sides were tossed into the forest.

The self-afflicted cuts down Connor’s left forearm—initially etched just two months ago—speak volumes more about what he has endured. The carvings appear fresh, red. Obvious.

His mother believes the self-mutilation could be indicative that her son is suicidal.

“I don’t know,” he says when asked why he slashes himself.

Part 29 of our award-winning series “Our Children’s Health”

Amanda Brown, of Plainview, works as a student teacher at an elementary school during the week. She also teaches Zumba, a fitness class that combines exercise with Latin music and dance. Two years ago she was a student at SUNY Oneonta, finishing up her sophomore year. Two years ago, she was told she had stomach cancer.

When she first went away to college, Brown was diagnosed with mono. Months later, still sick, she went to the hospital. Doctors found a cyst on the outside of her ovary.

“I just never got better,” she says. A year later, she went back to the hospital with horrible stomach pain, and was given a new diagnosis: an intussusception of the bowel. She was kept overnight, given a CAT scan and sent on her way.

A week later she was back in the hospital, again with severe stomach pain. Diagnosis No. 5: There was nothing wrong.

“It was almost like saying to me, ‘You’re making it up, it’s in your head,’ without verbalizing it,” she says.

Her gastroenterologist back at home found a surgeon she could visit in Cooperstown, N.Y., while she finished her semester upstate. It was finals week, so Brown made an appointment and took the 40-minute trip before her exams, looking for an answer.

“He felt my stomach and told me I had cancer,” she says.

Scared and upset, Brown finished up her semester and went home. Her doctor took a blood test, had her swallow a camera pill that would take pictures of her intestines, and took a biopsy on her small intestine.

She didn’t have cancer.

She had celiac disease, a potentially fatal, but treatable, disease that is almost never diagnosed properly, if at all. Even when it is, parents and children struggle to get others—including doctors and school administrators—to take them seriously.

FRIENDLY FIRE

Every aspect of life—from physical well-being to mental health—is susceptible to damage from celiac disease, an intolerance to gluten, the protein found in wheat, barley and rye. Unlike a wheat allergy, which causes a sudden, severe reaction like breathing difficulty, celiac is an autoimmune disease with a slower onset. Simply put, exposing a celiac to even the tiniest bits of gluten, which the body is unable to digest, causes it to turn against itself and attack its internal organs, waging a war on the immune system and destroying the intestinal walls so food and nutrients cannot be absorbed. Over time, celiac can lead to cancer, malnutrition and other disorders. But because many people think of gluten-free as a diet or fad, the fact that the disease is a serious, chronic, lifelong problem, is often overlooked.

An analysis done by the Hartman Group, a consumer marketing company, in 2009 found 93 percent of the people who buy gluten-free products don’t have celiac disease. They were either excessively health conscious or fad dieters in search of the next trend.

“Just because alternative health practitioners, personal trainers and celebrities are jumping on the gluten-free bandwagon, doesn’t mean it is right for everyone,” says dietician Shelley Case, author of Gluten-Free Diet. “Contrary to popular buzz, the GF diet is not a panacea diet.”

Case worries that too many people will look to the diet to solve all of their problems, from learning disabilities to obesity. The gluten-free diet only alleviates symptoms for those with an intolerance. For those without an intolerance, gluten is an important source of protein, iron and calcium. But as going gluten-free gains more attention, especially in Hollywood, the gluten-free lifestyle is often seen as the next low-carb diet.

“There really is nothing that irritates me more than hearing, ‘It’s just a piece of bread’ or ‘I hear you’re on the Atkins’ Diet’—like it’s the same thing,” says Craig Pinto of Jericho, kicker for the New Jersey Revolution arena football team, who was diagnosed with celiac 10 years ago. “Serious things can result from not getting this treated properly or diagnosed early enough, so it’s sad when it gets passed off as a joke when you can’t have a burger with a bun.”

Since celiac, a multi-symptom and multi-system disease, doesn’t always involve a stomachache, produces strikingly different symptoms in different individuals, and often mimics other disorders, it is commonly misdiagnosed. Celiac could manifest as an intestinal infection in one patient, a rash or growth problems in another and neurological problems or even dementia in a third. Recent studies suggest a gluten connection with some cases of autism. Celiac is also more likely to affect those who already have another autoimmune disorder, like type 1 diabetes or rheumatoid arthritis.

Pinto, who played football for Hofstra during college, was diagnosed with celiac in 2001, 10 years after he was diagnosed with Crohn’s disease, another autoimmune disorder.

“I was a pretty rambunctious little kid, but at that point I wasn’t growing,” he says. “I was pale, I was very sick a lot with stomachaches, but I was active so it was just kind of put off as I just had to settle down, eat and relax for a second.”

At 21 years old, he was still up late at night feeling sick after eating pasta or pizza. Since those who have one autoimmune disease are more likely to have others, and Pinto already had Crohn’s, he was tested for celiac. The test came back positive.

BREAKING BREAD

It’s 2:30 p.m. on a Monday, and Randi Albertelli of Old Bethpage is waiting for her two kids to get off the bus. Amanda, 9, was diagnosed with celiac when she was 5 years old. She had leg cramps, headaches and a distended belly. At her yearly checkup, the doctor found she was anemic.

“It was kind of a red flag because she was such a good eater as a child that we kind of questioned it, but we really didn’t pursue it, unfortunately,” says Albertelli.

As time progressed Amanda came down with other symptoms. She was moody and getting stomachaches.

“Luckily enough my pediatrician tested for celiac disease. We had no idea what it was,” she says. Her stomach had been swelling from malnutrition, even though she was eating like a normal kid.

“It was traumatic, it was devastating,” says Albertelli. “There are so many other horrible things in this world, but as a parent all of a sudden to hear that your child can’t eat certain things, it was upsetting. Now I look at pictures and I see it, and I say, ‘How did we not know?’ You get so mad at yourself as a parent, but I didn’t know.”

By Sammy Caiola

Carla*, a senior at a Suffolk County high school, returns home exhausted after extra help with her academic studies, a rigorous track practice and an SAT review class. It is 10 p.m., and while most kids her age are going to bed, she is only starting to dig into the tower of homework assignments on her desk. But rather than succumb to fatigue, she works until her essays are finished, and flawless, determined not to sacrifice a point on her homework average and consequently damage her GPA.

This is life inside “overachiever” culture: a division of high school students who are pushing themselves a little too hard to gain acceptance to top-notch universities, no matter the cost.

Carla dreams of going to an Ivy League school that accepts only 11 percent of its applicants, and for the past three years she has been stacking her schedule with Advanced Placement (AP) classes and extracurricular activities to achieve that goal. This year alone she is enrolled in three AP courses, adding to the grand total of nine she will have when she graduates.

“I really want to show colleges that I want to take the hardest classes,” says Carla. “I’ve always tried to challenge myself as much as I can. I gave up lunch last year and went straight through nine periods”

But it is not enough just to take challenging courses; it is about running straight A’s through all four years and not only doing well, but doing better than everybody else.

“The whole notion of wanting to be the best really pushes a lot of kids,” says Michael Quinland, clinical psychologist at a Suffolk County high school. “Students feel that they have to compete in order to be at the top of their class and will use any means necessary to accomplish that.”

The night before a big test, Carla’s room is a war zone. Flash cards, notebooks and loose leaf are everywhere, covering her carpet, desk and bed. She takes a blank piece of computer paper and rewrites the main points of every chapter in a different color marker until her fingertips are stained. She does not take breaks or sleep until all of the work is done.
“I don’t do anything else,” says Carla. “I don’t watch TV. I don’t go on the computer. I find a way to get it done. I don’t come unprepared to school. I don’t give in work that I know isn’t my best.”

The pressure that a heavy workload puts on overachievers is obvious, especially to teachers, who see the distress on the students’ faces every day.

“A lot of these kids are taking many AP classes at once,” says Christine Nelson, honors chemistry teacher at Paul Schreiber High School in Port Washington. “And they don’t have enough time to come to extra help if they’re having trouble.”

But even after all their hard work, grades don’t always meet the mountainous expectations students build for themselves, often causing them to crumble. For some students, a 95 just isn’t good enough, and they mentally rebuke themselves for not getting the 100.

“I had one major emotional breakdown over grades last year,” says Carla. “I was crying for about an hour, and then I had to go to practice. I get very stressed out and I tend to snap at people.”

Crazed from the Cradle

Even as a toddler, Alli Boccio’s mom knew she was special. Shortly after her arrival in kindergarten, teachers saw that she was a quick learner and urged her parents to transfer her to an advanced school with other children of her intellect. After test results revealed that Alli had an IQ of 150 at age 4, her parents enrolled her in the Long Island School for the Gifted (LISG), where she was first put to the high academic standards that would define her education for the next 10 years.

LISG is an accelerated educational program for students of outstanding intellect who want to challenge themselves by working one to three levels above their grade level. Located in Huntington Station, it is the only school of its kind on Long Island, and enrolls students from 60 different school districts, including those in New York City.

“We accelerate [the students] only in the subjects in which they are naturally talented,” said Carol Yilmaz, founder and current principal of LISG. “We want it to be challenging, but not so difficult that it impedes the learning process. Having to work at something helps them to have better study habits and teaches them to be good students.”

Being accelerated at such an early age encourages kids to keep their eyes on the future. They sit through standardized testing earlier than other children. LISG students take the English Language Arts exam (ELA) in third grade, while other students take it in sixth grade. By fifth grade, LISG students are taking placement tests for John Hopkins University, and by seventh grade they take the SAT.

“They trained us right from the start to succeed; it was like a college prep school,” says Alli, currently a freshman at SUNY Stony Brook. “The intelligence of a kindergartener there was equal to that of a third grader at a public school. The teachers praised us for everything, and always urged us to exceed expectations.”

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Unlike a regular school track, where students stay in one classroom for all subjects until they reach junior high, LISG students start moving from class to class as early as fourth grade. Students of similar levels of intellect are placed in the same classes, and teachers try to create an atmosphere that fosters productivity and confidence. This places students on a focused academic path from which they are warned not to stray.

“We were very disciplined there,” says Alli. “Sometimes we called it a prison.”

Students graduate from LISG and move on to a public or private high school. Alli enrolled at St. Anthony’s High School in Melville and found the transition more difficult than she had expected. Coming from LISG, where she had already completed many of the courses her peers were taking, Alli was put in AP classes with students a year older than her. Though she was the youngest in her classes, she had been challenged so much since kindergarten that the work was still easy for her.

“The adjustment was very difficult; I was a sophomore and every class I took was a junior or senior class,” says Alli. “I was better at the subjects than they were, and they resented it. I was teased and ridiculed. It was awful at first. I went from a graduating class of 17 students into a class of 600 students and I was overwhelmed.”

Brains on Drugs

Eleven p.m. is approaching, and Wesley* still has two essays and a calculus packet to finish by morning. Knowing he won’t make it through the night, he tells his mom he’s driving over to Andrew*’s house to borrow a textbook. When Wesley arrives, Andrew retrieves a vial of pills from his desk drawer and spills out two white capsules, which he gives to Wesley for $10. Wesley leaves, assured he’ll finish his work.

The capsules he just bought are 40mg doses of Ritalin, one of the several prescription amphetamines that high school students resort to when they need to cram. Ritalin, Adderol, and Concerta are three mild central nervous system stimulants that are often prescribed to children and adolescents with Attention Deficit Disorder (ADD). For a teen with ADD, the methylphenidate in the pill stimulates certain receptors in the brain and helps a diagnosed patient focus and stay calm. For a teen without ADD, it has the opposite effect.

“There is a high risk involved when taking these stimulant medications if they have not been prescribed to you,” says Dr. Timothy George, a West Islip-based pediatrician. “If you don’t have ADD and you take Ritalin, it increases your alertness, heart rate and metabolism. If taken in large doses, the result can be fatal.”

But despite the risk, overachievers sometimes use these medications when they need to pull all-nighters and coffee isn’t enough.

“Sometimes it would be caffeine pills or sometimes natural energy drinks that had some sort of caffeine or guarana or taurine,” says Wesley, a senior. “When it got really bad I resorted to amphetamines.”

Students diagnosed with ADD often have excess pills or just don’t take their prescription, which makes the drug fairly easy to find. But this isn’t a black market run by hardcore street dealers. Here, all involved are pill-popping honors students. Many of them are aware of the potential effects of the drug, but when it’s a question of finishing their homework, they do whatever is necessary.

“It’s dangerous, works for only a couple of hours, and when you run out, you want even more,” says Wesley. “Also, it’s a bit illegal. I’m aware of the damage I’m doing to my body when using the drugs, so I use them very sparingly.”

The use of amphetamines and other stimulants keeps determined students awake, which helps them finish their work, but takes its toll the next day. According to American Sleep Disorders Association, the average teenager requires nine hours of sleep every night, but many overachievers ignore this requirement.

“I was living on 3 to 5 hours of sleep [per night],” says Rob McAllister, senior at Hauppauge High School. “I pulled an uncountable amount of all-nighters throughout the school year and just forced my body to get used to it.”

But why would anyone—let alone teenagers—force themselves to get used to such an unforgiving life?

Though some overachievers motivate themselves to do well, many are pushed by their parents to live up to a certain familial legacy, or feel that they have to match or exceed high expectations set by siblings. When the family car already has two decals from top-notch universities, the youngest child is often mortified by the prospect of attending a second-tier institution and becoming the “failure child.”

“I’ve always been a little jealous of my older siblings for their good grades and their success at college,” says Mark Espina of Bay Shore High School, whose older siblings went to Dartmouth College, American University, and University of Virginia. “They all got scholarships, and I feel like my parents will kill me if I don’t get one. I want to go to a college of the same caliber as them, but not the same one because I don’t want to be compared to them.”

Getting accepted to top-notch universities is no easy task. According to Harvard College’s statistics from the class of 2013, 29,114 applicants were considered for the undergraduate college. Only 2,175 were admitted.

To make themselves stand out among a herd of Ivy League hopefuls, overachievers join clubs and community service groups in an attempt to appear well-rounded on their transcripts.

“I run track, I’m in French honor society, music honor society, and regular honor society, and I’m on Science Olympiads,” says Carla, the Half Hollow Hills senior. “I want colleges to see that I can balance everything, even with a lot on my plate.”

But that balancing act can be counterproductive. Says Christine Nelson, the chemistry teacher at Paul Schreiber High School: “[These students] think that their entire lives rely on their grades and they get overly stressed out, sometimes to the point that it makes them physically ill.”

Whether the pressure started in kindergarten or in senior year, many children struggle with their academic identity every day. And the psychological, emotional and physical tolls paid by these students can be even greater than the tuition fees at the schools to which they hope to be accepted.

*Names of students marked by an asterisk have been changed.

Part 28 of our award-winning series “Our Children’s Health”

By Elizabeth Siris Winchester

Adrianne Goldenbaum, lunch director of the West Babylon School District for the past 30 years, witnesses the poor eating habits of many Long Island children in school cafeterias daily. She fears she may even have unintentionally contributed to them.

“When I first started in food service everything was made from scratch—Salisbury steak, mashed potatoes, even the rolls,” Goldenbaum explains. “Then, all of a sudden, it became fast food and everything was fried and the caloric intake of meals was much higher.”

Goldenbaum observes, too, that as kids consume more calories, they appear to exercise less. “A lot of the kids these days don’t go out and move. They are consuming these huge amounts of calories and not burning them off,” she says. “Life is just different than when I was growing up and we were out all day playing until dinner time.”

A high caloric diet paired with a sedentary lifestyle is a recipe for excessive weight gain, and a major reason for the current childhood obesity epidemic in the United States. Genetics also comes into play. The American Academy of Child & Adolescent Psychiatry states that children with one obese parent have a 50 percent chance of becoming obese; if both parents are obese, the risk jumps to 80 percent. Certain medications, stress and illness may also be to blame.

No matter what causes childhood obesity, Goldenbaum is correct in observing it rise throughout her career. According to the Centers for Disease Control and Prevention (CDC), since 1980 the number of American children who are obese more than doubled for ages 2 to 5, almost tripled for ages 6 to 11, and more than tripled for ages 12 to 19. Today, about one out of three children and teenagers in the U.S. is overweight or obese.

Measuring Obesity And Its Costs

Obesity is defined as an excess  percentage of body fat. In adults and children over the age of 2, obesity is measured by the body mass index (BMI). The BMI is calculated using a person’s weight in relation to his or her height. For children and adolescents, BMI measurements are plotted on charts for age and gender, for percentile rankings. Those with a BMI more than the 85th percentile but less than the 95th percentile are considered overweight; those above the 95th percentile are considered obese. (Calculate your child’s BMI.)

Pediatricians assess a child’s BMI on every well visit after the age of 2. Dr. John Sheehy, who has been in pediatric practice in Glen Cove since 1978, notes exceptions to BMI classifications. “If kids are very athletic they are going to have increased bone density and muscle mass, and in those kids the BMI might be higher,” says Sheehy. “I say, ‘Don’t look at your weight; look at your conditioning. Look at how your pants fit.’”

Exceptions aside, why do the skyrocketing childhood obesity rates have experts very concerned?

“Doctors have been finding cases of what used to be ‘adult’ diseases [such as heart disease, type 2 diabetes, and conditions including high blood pressure and elevated cholesterol] in overweight teenagers and children as young as age 6,” explains Dr. Joanna Dolgoff, a pediatrician who began specializing in treating childhood obesity in February of 2008, when she started Roslyn-based Dr. Dolgoff’s Weigh: Child and Adolescent Weight Management Program. “New research indicates that childhood obesity itself may shorten one’s life span, even if that person is not obese as an adult.”

While many obesity-related complications may only be apparent to experts, parents may be able to observe some associated problems at home. These conditions include asthma and other breathing problems, troubled sleep, joint pain, depression and anxiety. Studies have shown that overweight and obese children are more likely to be victims of bullying and peer discrimination.

As if a rise in obesity-related illnesses in young people today is not damaging enough to society and future generations, the cost of treating them is. The CDC reports that from 1997 to 1999, hospital costs each year related to treating obesity in children and adolescents were $127 million, while from 1979 to 1981 they were $35 million.

“The average U.S. taxpayer pays $175 per year to finance obesity,” said Eric Finkelstein, Ph.D., at the National Conference on Childhood Obesity in June. “Obesity increases the nation’s health care bill by more than $90 billion per year.”

Fighting The Fat

Obesity has emerged as a leading health hazard in the U.S., and government and school officials, doctors, parents and other community members are working to reduce the growing problem. In New York State, where almost 60 percent of adult residents are overweight or obese (in Nassau County, it’s 52 percent, and Suffolk, 57 percent), U.S. Sen. Kirsten Gillibrand (D-NY) has made fighting childhood obesity a top priority.

“The most effective way to address obesity is to provide healthier food and exercise opportunities for our children,” the senator said. “We need to be taking real steps to give parents, schools and communities the resources they need to give our children access to fresh fruits and vegetables.”

This past July, Gillibrand introduced legislation that would prohibit public school cafeterias from serving trans fats, and help educate parents about the dangers of overloading on foods that are high in fat from hydrogenated oils. New York City public schools have been successful in their quest to do so ever since the city’s trans fat ban in restaurants began in July 2007. Gillibrand also plans to work to get schools to cut back on the amount of junk food they serve.

But meals that include fresh fruits and vegetables and top-quality meats come at a higher price than the ones that many school districts are currently serving. The Child Nutrition and WIC Reauthorization Act, which is scheduled to expire on Sept. 30 (at press time, it was anticipated that Congress would extend this deadline until later this fall), determines how much money the federal government provides to schools for reimbursable meal programs. One such initiative is the National School Lunch Program, which gives low-cost or free lunches to students who qualify for them. Gillibrand would like to increase the reimbursements for the lunches by 70 cents per meal, in hopes that by doing so, schools will be able to improve the meals’ nutritional value.

Part 27 of our award-winning series “Our Children’s Health“

Every morning was the same: Brendan would get up for school. He’d put on his clothes and eat his breakfast. His mother, Ashley, would make sure everything was in his backpack. As the time inched forward, he thought about getting on the school bus, walking into the classroom. His stomach tightened. His nerves grew frayed. He became silent. And then, before he would leave his house, Brendan had to do one more thing to start his day.

He went to the bathroom and threw up.

Brendan suffers from anxiety disorder, an umbrella term for many other challenges faced by children and adults when confronted with some of the elements of everyday life. Brendan’s story is not uncommon. Some research has said that as many as one in five children suffers from some form of anxiety disorder, which can affect grades, social interaction and other aspects of the life of a child.

It did not end at vomiting for Brendan. Once he was out of the house, he dealt with his anxiety in another way. He said nothing, a condition of his selective mutism, a disorder that many children deal with. At home, he was a talkative child. Out of the house, and especially at school, Brendan was unable to speak above a whisper, if he even spoke at all.

“He did that practically every day until third grade,” says Ashley.

If he raised his hand in class, he could not ask his question or offer his answer. At Cub Scouts, when he wanted to respond to the Scout Master, he would whisper into his father’s ear and his dad would answer for him. And so it went. Ashley says that when he was younger, the kids would rally around him and help him out. They would speak to the teacher for him. During class concerts he would nervously tug at his clothes. One year, at the annual moving-up ceremony at school, the kids had to read from journals they had authored during the year. They stood in a line, side by side. As Brendan’s turn grew near, Ashley felt his panic. At last it was time for Brendan’s piece. A girl next to him took his journal from him and read it to the room.

Ashley says she cried. She had done what she could to be there for him, including be a lunch monitor so he would see her and the teachers would get to know who she was.

Other kids would take him as their friend. One boy who lived nearby became his closest friend, and in that role Brendan’s mouthpiece as well. He would speak for him whenever necessary. But as Brendan got older, the kids got a little meaner. They called him names, like “Mute Man.” It wasn’t getting easier. Ashley says Brendan went to therapy for years. But, she says, “I don’t think it helped him very much.”

A new course of treatment was established for the quiet young boy. Brendan began receiving treatment from Dr. James Snyder of Great Neck-based Long Island Psychiatry about two and a half years ago. Brendan has since undergone consistent psychotherapy and takes the powerful antidepressant Zoloft every day.

“We resisted using drugs for a long time,” says Ashley. “But if you have diabetes, you use insulin. Brendan needed medication to treat his problems. Once he started [taking] Zoloft, there was continuous improvement.”

The treatment worked quickly, says Ashley, and by the end of third grade, Brendan was making great progress. He is 11 years old now, and will enter middle school this fall. As Ashley speaks, Brendan is outside, playing with a friend who had slept over the night before. He speaks at school. Loves baseball and soccer. He does not scream and yell like the other kids, though. Even so, he is light years from the days when speaking to anyone other than his mother or father ranged from difficult to impossible.

“Things are pretty normal,” says Ashley.

This year is a new test for Brendan. A jump from elementary to middle school is big, and such changes can be panic triggers.

“Any type of transition can trigger panic,” says Dr. Suzanne Main-Wegielnik, who specializes in school and clinical psychology at the Orchard School at the Andrus Children’s Center in Yonkers. “School beginning, school ending, a vacation—any of these things can result in a panic attack.”

Those  panic attacks manifest themselves in physical manners, says Snyder, and they are painful and unpleasant.

“Kids will develop headaches, stomach aches, many different maladies,” says Snyder, who regularly treats children suffering from anxiety and panic disorders.

Dr. James Snyder treats dozens of kids with anxiety and panic disorders.

The first thing to do, of course, is determine if any such physical reactions are indeed the results of psychological issues.

“Always make sure the child is examined by their primary care physician first,” says Snyder. Anxiety can cause kids to refuse to go anywhere, especially school. And forcing them to go somewhere is not the answer, he says.

“Parents need to be trained. It is very frustrating for them. When their kids are suffering, they are tortured, and it is hard to understand why their kids would have these feelings,” says Snyder.

Of course, lots of kids hate going to school. But what about a family vacation? Should that cause such issues?

It did for Frank.

One of two children, Frank is about to start his sophomore year in high school. He has no real anxiety issues these days. Still, for years there was almost nothing that would not throw him into a fit of anxiety. Instead of taking comfort and refuge in a week away with his parents and sister, Frank became unable to function.

“He was always nervous,” says his mother Frances. “When he was about 9, it was at its worst. Leaving the house for anything, especially school and vacation, was torture for him.”

Frank suffered from anticipatory anxiety. As the hour approached, Frank would get sick. Very sick. He would vomit. As the family prepared to take a flight, he would have to visit the men’s room and throw up. His stomach would twist into a knot. He would not be able to eat for the entire vacation.

“He would play with the other kids, go swimming and be smiling, but his stomach was tight,” says Frances. “And he just could not eat.”

Frank began to see Dr. Snyder. He went on Lexapro, another anti-depressant. Each year he got better. When he got ready to go to camp one summer, he took Klonopin—a drug used to treat epilepsy and panic attacks—for the initial anxiety and the first day of camp. But he was all right after that.

He continues with therapy and practices relaxation techniques. The problems will always be there to deal with, says Frances. It has also affected his social life.

“He does not have a lot of friends,” she says. But if he is invited somewhere, she makes sure he attends. When he was younger, he could not even sit in a movie theater, but Frances says she and her husband turned it into therapy and took him until he became more comfortable with the surroundings.

“He has to confront these things and deal with them. It’s just something he’ll always have to do,” says Frances. “Life has to go on. We want him to enjoy it.”

An Editorial Essay By Lynn Burke

Toby, 21, was an honor student at Walt Whitman High School in South Huntington and is now a biology major at Stony Brook University. He is about to take possession of his first apartment. His prospective landlord hands Toby the lease to sign. His signature? He has none. He scribbles his name. Like tens of thousands who were part of the whole language experiment of the past three decades, Toby has been failed by the system.

What Happened To Our Kids?

Why does our younger generation pretty much write in print today, despite the fact that universally, students are taught cursive in mid-elementary school?

If whole language, a teaching philosophy now known as balanced literacy, has been the focus of our children’s education for decades, why do we see so many spelling and grammatical errors in everything we read?

Why can’t today’s high school students, who man the cash registers at local retailers after school and in summer jobs, “make change” if the cash register doesn’t tell them how much money to return to the customer?

Why are business leaders still telling us that graduates of our educational system, at whatever level, are inadequately prepared to meet the demands of today’s work place?

Why does every child seem to need a tutor these days?

Why do so many students entering college need to take non-credit-bearing remedial courses, despite having recently received a New York State high school diploma?

Let’s see if we can puzzle through some of this.

Getting Testy

Education is one of the most publicly debated issues of our time, due in part to its impact on property taxes. Frustration with taxes in general, coupled with the fact that school and library taxes are the only arenas in which the public has direct voter impact, fuel the controversy. Newspaper publication of standardized test scores, listed by school district, has resulted in perceived property values being at least in part dependent on school test results. Understandably, administrators feel tremendous pressure to have their districts look good when the standardized test scores appear in print. In turn, administrators convey to teachers the importance of having classroom instruction emphasize test-taking skills. How has that translated into classroom practice? Each and every standardized test administered to students of any age or at any grade level is preceded by an unprecedented emphasis on test prep. Test preparation transfers the pressure to score well from the teacher to the students. The students, clearly perceiving the importance of their individual test scores, then worry their parents with what easily becomes test anxiety.

Time constraints are an unavoidable factor in standardized testing. Because very specific curricula content must be covered and in theory mastered before the assessment tool is administered, we are now teaching on a timeline. This means that whether or not a particular student has mastered the material just taught, class instruction is moving on to the next topic on the list.

Now we also know that the learning rate of a particular individual varies, depending upon what he or she is attempting to learn. Predictably, if a student has failed to learn what has previously been taught, that student will have difficulty learning subsequent instructional topics particularly in subjects like mathematics, which are often taught hierarchically.

According to the anti-testing organization www.nomoretests.com there are many reasons to oppose testing, not the least of which is that testing is also big business at odds with our children’s best interests. According to College Board studies, the results are more reflective of a student’s family income than their proficiency. For example, on SATs, students appear to raise their score by 30 points for every $10,000 in their parents’ income, which could reflect the ability to take SAT prep courses and the like.

Is Handwriting Passé?

Where does this leave us with handwriting? We spend a great deal of extremely valuable classroom time instructing students how to execute manuscript/print and cursive/script handwriting, despite the fact that few if any teacher training institutions instruct educators in how to teach handwriting or, more importantly, why handwriting matters. As Toby’s third grade teacher told his parents, “Handwriting doesn’t matter. Today, everyone uses a computer.”

Yet nowhere on Long Island at any grade level do we see a computer on every student’s desk. Even more importantly, lost is the understanding that handwriting is the integrative process that helps a learner connect the individual auditory sounds of language (phonemic awareness) with the letters that visually represent those sounds (phonics).

Handwriting is a very complex set of motor and information processing skills that requires several of our sensory systems to work together in coordination. If in fact handwriting is of little consequence today, then why do we, the taxpayers, pay for an occupational therapist to work with a student who has poor handwriting?

The reason for that occurrence, long ago lost in our teacher training institutions, is that spoken language has been found to exist almost innately in humans. In order to live together in any type of societal structure, we must speak with one another. Reading and writing on the other hand, are man-made inventions. A society develops the ability to write down and to read ideas and laws when that society becomes too large and/or too complex for its members to reliably communicate person-to-person on an event-by-event basis.

Reading—as in a book, not a text message—and writing are highly skilled processes that must be first learned and then mastered to the point of automaticity.Thanks to texting and instant messaging, kids are shirking handwriting and reading altogether, and it appears that many schools, as demonstrated by Toby’s experience, don’t seem to care either. Terms such as LOL and OMG have moved from the computer to everyday spoken communication. Schools seem to have given up on teaching cursive and are now teaching “print cursive,” which involves semi-connected letters—Toby’s “signature” on his lease.

Cursive, which started its decline in the 1970s with the rise in popularity of computers, has been lost to this new generation. In 2006, when the SATs first introduced essays, only 15 percent of the 1.5 million students wrote in cursive.

The demise of handwriting is also a cognitive loss. The enhancement of neurological processes involved in the skill of writing is wide-ranging.

Oh, the SAT scores written by those who used cursive? They were higher than those written in print, according to the College Board.

OMG: Whole Language and Technology

The whole language philosophy is that when children are immersed in literature they will figure out on their own how to read. But it has been proven that often skills such as spelling fall by the wayside. Just give an impromptu spelling test to those around you in their 20s or younger. Whole language has since drawn much criticism, and has even undergone a name change—balanced literacy—but the operative elements remain the same.

Few people will deny that immersion in literature provides an engaging learning environment for those who can read, which translates into 20 to 60 percent of learners who learn to read no matter how they are taught. The remaining (almost) half of the student population requires direct instruction in order to learn the transcription of spoken language into written form.

The problem presented by whole language instruction does not lie in the fact that it utilizes authentic, rich literature as its instructional medium. Rather, the problem lies in the fact that specific skill instruction is incidental—specific skill instruction is conducted when the need arises.

Scientific study has proven beyond a doubt that maximal potential is achieved when the specific sub-skills of reading and writing are taught simultaneously in a sequentially organized, cumulative manner that is presented to the learner directly and explicitly and not learned by rote. That does not occur with whole language.

Technology has further interfered with the acquisition of conventional spelling. When texting, the communicator’s ability to effectively utilize the phonemic/phonetic elements of language are clearly evident. However, our schools fail to comprehensively instruct students in, and insist on the mastery of, spelling generalizations and conventions. These simple teachings change English from a language riddled with exceptions to a highly flexible, word-rich language that is 90 percent phonetic when all of the component elements are known and understood. In other words, when we teach someone that “…sometimes we change the final ‘y’ in a word to ‘i’ and then add the suffix,” an understandable response is, “OK, sometimes I’ll do that.” The unspoken clarification is: but when?!

With practice, the learner knows when to do what and can produce conventionally recognized written word forms. To teach someone something without having them understand why that particular “thing” matters becomes an exercise in futility. As a result, well-skilled, knowledgeable teachers do not realize in their students the results they seek (and which they know the students need).

The same is true when teaching a skill like cursive. If you teach someone how to bat a ball but fail to provide them with sufficient practice, why teach them to bat the ball at all? The same is true of any type of handwriting.

Instead of showing students what cursive writing looks like, we need to directly and explicitly teach them the process of cursive letter formations and connections and then insist that they practice that instruction until they have mastered it. Skill instruction without practice to mastery is a waste of instructional time.

Training Vs. Learning

An unfortunate corollary of the need to score well too often involves a shift in instructional emphasis from understanding concepts to getting the right answer. You do indeed have to “bubble in” the correct spot on the test form, so in many instances getting the right answer makes complete sense. Test preparation is very helpful with this aspect of testing. But what happens when you haven’t mastered the content that has been taught? You sort of know the stuff but you don’t really understand it. Often those students can get the right answer if they are taught to do things like find the numbers, read the key words and do what they tell you to do. Or in the case of an essay question, struggling writers can be taught very formulaically to restate the question, start the next three paragraphs with “first,” “next,” “last” and then conclude by restating the first sentence in their own words.

I’m reminded of a third grader who really struggled with writing tasks. He looked “finished” on a particular assignment, so I asked, “Are you done Bobby?” Very seriously, he replied, “Yeah, I just have to go back and put in the periods.” And that’s exactly what Bobby did. I watched him, without reading one word of what he had written, start at the bottom and move backwards to the beginning of his essay, putting one randomly placed period on each line of writing.

The bottom line is that we are now covering the curriculum, not learning it, and there is a vast difference between the two. Increasingly we hear students declare that they hate to read. Any teacher can tell you that whatever they are teaching and to whomever they are teaching it, the first question asked is, “Will this be on the test?” When I taught at the middle school level, the second question invariably was, “Do we have to memorize this?” I would tell them,  “You really don’t have to memorize anything. If you understand it, you will be able to figure out the answers.”

These examples attest to the reality that schools are no longer nurturing lifelong learners; but rather, schools are now training students. Kids want to know what they have to do to pass the next test, get to the next grade, and eventually work at the job they desire. So what’s gone so very wrong?

The Information Boom and Accountability

There has been, without doubt, an exponential increase in the amount of information and knowledge now available to be learned and ways to learn it. When business leaders accurately informed the educational system that it was not sending them workers who were sufficiently skilled to perform what was expected of them in today’s work place, educational leaders and, indeed the public, began questioning: What’s wrong?!

The push for accountability as a driving force in education was born and has become a determinant of whether or not we are doing a good job of educating our citizenry. Are the graduates of American schools better prepared now to meet the needs of an internationally competitive workplace? We are still awaiting the business sector’s ultimate response. But the rumblings heard from business leaders, even in casual conversation, seem to indicate that still, too many of our high school and even college graduates can’t write a persuasive letter, can’t do basic math, can’t problem solve or think critically. So what’s really going wrong?

The learners have been left out of the learning equation. Because there is so much that is learnable, most of which can easily be looked up, we need to stop viewing curricula content as a body of knowledge that must be remembered. Curricula must instead be seen as the vehicle used to teach our students how to think!

As Sarah McPherson, Ed.D, chairperson of instructional technology at the New York Institute of Technology in Westbury, so succinctly puts it, “Instead of granulating content and attempting to process it for the students, we need to place emphasis on the development of higher-order thinking skills—analysis, synthesis, application—and teach students how to problem solve, how to determine relevance, how to reflect on their own learning.”

In real life, people must be able to figure out, “What information do I need?” and “Where can I find it?” That means that graduates of the public education system must be able to read and write fluently so that they can access and use the information they need. That irrefutable need means that we must without equivocation teach the basic, underlying foundation skills of both language arts and arithmetic to mastery. In turn, that necessitates that we teach the learner…not simply to deliver content.

“Thanks to modern science,” says Darra Pace, Ed.D, associate professor of counseling, research, special education, and rehabilitation at Hofstra University, “we are increasingly knowledgeable of how people learn, and we know that there are differences among us with regard to how we each learn best. Those learning differences need to be factored into the process of teaching.”

In addition, our learning environment needs to better parallel the realities of today’s work environment. In the real world, most people don’t work in isolation. Yet, we often expect our students to do just that. In real life, we know that no one is good at everything. Yet in school we want straight-A students; or in today’s rubric lingo, we want our students to get “all 4s and 3s.” Instead, we should teach our students how to recognize and acknowledge their relative strengths and weaknesses. That would result in their being better able to learn to work collaboratively, utilizing each group member’s strengths.

Lastly, in real life, how often do we have to “take a test” to prove our competence? Our work performance is evaluated within the context of what we do and by the results we achieve by doing it. The desire to do well is intrinsically motivated. In schools, we need to minimize such extrinsic motivators as getting a good score, and instead become masterful at nurturing the true love of learning, with which the overwhelming majority of children enter preschool, kindergarten and first grade.

As a nation, we must move from an emphasis on product to an emphasis on process. We need to reliably equip all of our students with the skills they need to easily access and utilize information. Then we will have the time and energy to value the questioning that catalyzes learning and nurture the process of discovering the answers. Then and only then will standardized tests begin to measure how well we are educating our young people.

Lynn Burke, a former teacher, is an educational consultant who teaches teachers to improve instructional results for learners of written alphabetic languages. She serves as president of the Long Island branch of the International Dyslexia Association and is a board member of the Learning Disabilities Association/LI branch.

Amanda waits impatiently for an important package to arrive from FedEx. When the doorbell rings and she signs for the materials that arrive in a cooler, she feels relieved knowing that all she has to do now is wait. The package needs to settle at room temperature. When it does, she takes a saline-filled syringe from her dresser and injects it into a catheter line she has in her right arm. It’s a prep for her injection of Rocephin, an extremely potent antibiotic.

After an hour, the tennis ball-sized amount of medication finally enters her system, sometimes forcing her thoughts to be foggy and her stomach unsettled. She is nauseous. She then takes a syringe filled with Heparin to lock the line to avoid potentially lethal blood clots.

To a passerby on the train or street, Amanda Morante appears to be a healthy, normal 23-year-old woman. Her youthful appearance with porcelain skin, rectangular glasses and attenuated frame could leave most to assume she’s barely 16.

“But I’m not normal,” she says. “I am handicapped. It’s just not visible.”

Morante suffers from chronic Lyme disease, a condition that is unclearly defined and treated, and is a curiosity within the medical world. It is estimated that Morante contracted the disease when she was approximately 7 years old. Neither she nor her parents ever saw a rash, which is the usual indicator of a deer tick bite, the cause of the disease.

THE DIFFERENCE

It is estimated by the Centers for Disease Control and Prevention (CDC) that about 12,000 to 15,000 cases of Lyme disease are reported each year in the United States, primarily in the Northeast and North-Central parts of the country. The CDC also reports that in the year 2006, there were 20,000 cases reported, most of them children.

Lyme disease and chronic Lyme disease, named after Lyme, Conn., where the condition was first discovered in the U.S. in the mid ’70s, has a wide range of symptoms, from a distinctive rash to swollen joints to migrating pain. The symptoms initially were thought to be those of premature rheumatoid arthritis. Lyme disease and chronic Lyme have dissimilar symptoms and must be treated differently. Lyme disease’s initial infection is most often contracted when a deer tick, sometimes the size of a poppy seed, infected by the borreliosis bacteria, bites a person, leaving a “bull’s eye” rash.

If you find a tick on your child it is advised that you not pull it out, but rather have a doctor do so within 24 hours. They can then test it. It is easier to test the tick for Lyme than the person. The bite causes flu-like achiness, often accompanied by a fever, and in some instances disorientation, irritability, sleep disturbances, extreme anxiety and memory loss. If caught early, a strict regiment of Doxycycline can conquer the infection, placing the bacterial infection into remission.

However, people suffering from chronic Lyme disease may never have seen or had the “bull’s eye” rash—like Morante, who first noticed Lyme symptoms two years ago. People with chronic Lyme are affected differently. There isn’t a concrete way to manage the illness due to the presence of co-infections. People with chronic Lyme suffer symptoms from chronic pain to neurological deterioration from the bacteria’s screw-like shape burrowing itself into brain cells. Treatment, because its symptoms vary from person to person, is problematic, causing difficulty in determining guidelines for diagnosis, treatment and qualifications for medical insurance companies to abide by.

TESTING, TESTING

While living in the United Kingdom in 2007, Morante woke up extremely ill one morning, unable to swallow, so she went to the hospital. While there, she was hospitalized three times before returning to her parents’ home in Plainview, for further medical attention. “[The doctors] told me I had fibromyalgia,” remembers Amanda. “It became clear, however, that that certainly wasn’t the case. It wasn’t just pain. I was slurring my speech. I couldn’t swallow. So then they said it was chronic fatigue syndrome.” After many tests, changes in doctors, treatments and countless diagnoses, Morante wasn’t getting any healthier.

“I went on this support group chat room on the Internet for people with chronic fatigue syndrome, and this one woman posted that 77 people on the board had been tested for Lyme disease, and that maybe it was a trend…I grew up on Long Island and spent time visiting the Poconos, and then I thought maybe I should be tested.”

Says Clinical Psychologist Anna Satalino, Ph.D., who specializes in how chronically ill Lyme patients can cope with their disease: “There are so many people out there that are misdiagnosed…and chronic Lyme isn’t getting any publicity, it’s silently going on under the covers.”

In her persistence to get better, Morante took the necessary steps of finding out how to be properly tested for Lyme. Through Internet research and online support sites like Lyme Friends (www.lymefriends.com), a social networking site much like Facebook, but strictly reserved for people with Lyme disease, she learned of a specific lab in Palo Alto, Calif., called IGeneX, Inc., that tests for Lyme using an extremely sensitive process that detects Lyme bacteria in chronic cases rather than initial Lyme cases.

According to IGeneX, “Lyme bacteria are not always detectable in the whole blood, even in active disease. The bacteria like to hide…every patient responds differently to an infection and antibodies may only be present for a short time.”

The most common Lyme test is called ELISA, which is mostly used among general practitioners not specializing in Lyme disease diagnosis and treatment. However, the ELISA test is considered to be the least sensitive, only detecting the patient’s IgM and IgG levels, which are the body’s reaction to the Lyme bacteria. Other Lyme tests are the Lyme IFA, which is good for detecting the disease while it is still new, or relatively infant within the body. The Lyme Dot Blot Assay test searches for bacteria present in urine and a Polymerase Chain Reaction test, which is a critically specific test, can detect the disease in nearly all stages of development. Another form of testing, which is the test that Morante had taken, was the Western Blot, which takes a literal picture of the antibodies within the blood that the body develops in reaction to the infection.

STAYING POSITIVE

When Morante’s IGeneX laboratory test results came back to her, it didn’t matter that they came back “positive,” because New York State and the CDC don’t rely on IGeneX results.

“According to the State and the CDC, I’m not [considered] positive,” she says.

Says Satalino: “People feel very alienated, especially when they go to infectious disease doctors they say that chronic Lyme doesn’t even exist. There is so much research literature out there that supports that it is a chronic infection, but what happens is that the university state physicians and the Infectious Disease Society, they hurt the Lyme patients in a bad way because they ignore the research that is out there.”

Reasons as to why the disease is often considered to be nonexistent are debated. “There’s a lot of political reasons why,” Satalino says. “Money. Basically it comes down to the dollar, the cost of care for patients and the insurance companies who basically run everything.”

Because the guidelines set by the CDC for chronic Lyme disease determine that there must be five positive bands or markers present in the blood, Morante does not qualify, yet she still suffers all of the symptoms and has four of the five necessary bands present in her blood.

“This is the same as the way AIDS was treated in the ’80s,” says Morante. “People die from this disease. People are paralyzed from this. People’s families are ripped apart from this, but no one has a real clue as to what Lyme really is. How can I not have Lyme from one lab, if I have Lyme from another?”

According to Daniel Cameron, M.D., a member of the International Lyme and Associated Diseases Society, “Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives are far more common… Doctors who are experienced in recognizing Lyme disease will treat when symptoms typical of the illness are preset, even without a positive test, in an effort to prevent the development of chronic Lyme disease.”

CO-INFECTIONS AND COPING

In chronic Lyme patients, the presence of co-infections often occurs, which makes chronic Lyme so difficult to treat. Deer ticks carry other infections besides the Lyme bacteria. Most common are Babesiosis, Ehrlichiosis and Bartonella. Morante is afflicted most by Bartonella and has yet to begin treatment for the co-infection because of the cost.

Bartonella is a co-infection that leaves patients suffering from anxiety, hysteria, sore throat, swollen glands and other glandular problems. Morante says her doctors believe it is the sore throat condition that caused her swallowing problem. Morante recalls a time when “I was afraid to eat because I thought I’d choke.”

Co-infections are what make day-to-day life with Lyme so difficult. “I can’t work,” Morante says “I can’t stand for too long, I can’t lift anything with my arm that’s over five pounds [due to the catheter]. I have to plan my entire day around it. Will I be able to do my medicine? Will I be able to sit down somewhere? Can I get home quickly if something starts to go wrong? I want to be on maintenance therapy, like people who have diabetes, but the IV meds are a guessing game. Try this, is it working? Try that, is that working?” Her treatments are variously experimental due to the inconclusive test results and restrictions on treatment outlined by the CDC.

Co-infections make treatment difficult for those suffering from them. For Morante, the greatest grief is the unknown.

“For me it isn’t the pain. I can handle it. I can manage it. I would like to not have to live in the unknown anymore…get this IV out of my arm and just live like a regular person. It’s not about getting better, it’s about getting treated like a human being by doctors and insurance companies, because I’m not.”

LIVING

Living with Lyme disease is manageable but, Morante says, “It’s changed the way I think. I’m numb to it now, but it’s changed every aspect of my life.”

Morante, a Fashion Institute of Technology graduate with a BFA in graphic design, has had her entire life altered by the disease. She plans her days around her medication, plays a guessing game every time she is in pain and wonders whether it will remain permanent.

“You think you have all these goals, and then well, it’s probably not going to happen that way,” is how Morante thinks of the way Lyme has affected her life. “I go out, I see my friends and I pretend I’m not sick, but at the end of the day when I come home to my room, I’m there, alone with my disease, and it’s always going to be that way.”

Amanda pays for her medicine out of pocket because her insurance doesn’t support experimental Lyme treatment medication. Due to her disease she is unemployed, so she sells jewelry and takes donations through her website: www.amandamorante.com

Under Our Skin, There’s No Medicine for Someone Like You is an award-winning documentary on chronic Lyme disease by Andy Abrahams Wilson. The documentary is an in-depth view of Lyme disease and how it affects those who have it as well as the people around them. The film highlights the debate on diagnosis and CDC guidelines that affect the way insurance companies treat their subscribers. The documentary will be shown at the IFC Theater at 323 Avenue of the Americas in New York City, June 19 to 25. Call 212-924-7771 for more details or visit www.underourskin.com.

The Empire State Lyme Disease Association, Inc. runs support groups for those suffering with Lyme on Long Island at these locations:

Huntington

1-3 p.m. at the Huntington Library

338 Main St.

First Tuesday, monthly

Manorville

7-8:30 p.m. at the Manorville Firehouse

16 Silas Carter Rd.

First Wednesday, monthly

Hampton Bays

6:30-8:30 p.m.

Hampton Bays Library

52 Ponquogue Ave.

Fourth Thursday, monthly

Jessica Pino, now 12, has been experiencing seizures since she was 4.

Part 24 of our Award-Winning Series “Our Children’s Health”

By Jaimie Lazare

Seizure awareness may very well have been heightened by a series of tragic and shocking events this year. Just one day after celebrating the New Year, news headlines reported that John Travolta’s son, Jett, 16, died of a seizure while vacationing with his family in the Bahamas.  Weeks later, at the Inaugural luncheon for President Obama, Senator Ted Kennedy, who is battling brain cancer, suffered from a seizure that was attributed to fatigue. And most recently, pop icon Prince revealed during an interview with PBS’s Tavis Smiley that he suffered from seizures as a child.

Despite all the media attention, there’s a lot that is still misunderstood about seizures. On March 28, 2009, the Walk for Epilepsy took place in Washington, D.C. to help raise awareness for the third most common neurological disorder in the country: epilepsy. The march demonstrated a continued need to inform people and raise awareness that seizures and epilepsy are important issues when it comes to our children’s health. According to the Epilepsy Foundation, there are 300,000 children under 14 years of age with the disorder. Contrary to the common portrayal of people with seizures—a person convulsing uncontrollably—the disorder has many different types of manifestations. And being aware of the various types helps us to be less likely to miss seizure behaviors that would have otherwise been ignored.

Shake, Rattle and Roll

Historically, people with seizures were thought to be possessed by demons or cursed by gods.  Hippocrates attempted to debunk those beliefs with his book On the Sacred Disease, in which he acknowledged epilepsy as a brain disorder. Still, centuries later, people with epilepsy remain a largely misunderstood group. From ideas that those who suffer from seizures are not intellectually capable to notions that they are flat-out crazy are all wrong—and unfortunately these stigmas still exist today.

So what is epilepsy? Vijaya Atluru, M.D., chief pediatric neurologist at Winthrop University Hospital in Mineola, explains it simply: “Epilepsy is due to recurrent seizures.” And what are seizures exactly?

A seizure is a sudden burst of electrical activity that affects normal brain function. A child has to experience more than one “attack” in order to be diagnosed with an epileptic seizure disorder.

There are two types of seizures: partial and generalized seizures. These types are categorized based on whether abnormal electrical activity affects the brain partly or entirely.

Partial seizure: In this type, the brain is affected focally and is subcategorized based on whether the person is conscious during the seizure.

• Simple partial seizures do not result in a loss of consciousness. One may experience changes in his or her senses and emotions with involuntary jerking of a limb accompanied by symptoms such as tingling sensations.

• Complex partial seizures result in a loss of consciousness. During this time, the person is usually staring while engaging in some activity such as hand rubbing, chewing or twitching.

Generalized seizures: These seizures affect the entire brain, and there are four types.

• Absence seizures, also known as petit mal, result in a temporary loss of consciousness while the person is staring and their body goes through subtle movements.

• Myoclonic seizures affect the muscles causing sudden twitching or jerking movements of all limbs.

• Atonic seizures also affect the muscle, but instead of causing uncontrollable contractions, the child loses all muscle tone and suddenly collapses. This is why they’re also referred to as drop attacks.

• Tonic-clonic seizures, also called grand mal, are the most intense type, resulting in a loss of consciousness, body stiffening, uncontrollable shaking and urinary incontinence due to loss of bladder control.

Encounters of the First Kind

According to the Epilepsy Foundation, most seizure disorders begin during early childhood.  This is mainly because children’s brains are immature and more susceptible to seizures.

“Neurologically impaired children” are the ones who suffer with the condition, says Winthrop’s Atluru. Factors such as head injuries, lack of oxygen during birth, or problems with the development of the brain are just some of the many risk factors for seizures in children.

Each child is affected differently, and for reasons that may or may not be clear. While some children may outgrow their seizure disorder (which was pop star Prince’s case), others may endure longer battles with epilepsy. One thing is for sure: Every parent recalls the first time they saw their child experience a seizure.

For 12-year-old Jessica Pino, of Bethpage, the seizures started after she experienced a fall in her backyard a few days shy of her 4th birthday. Though her parents did not observe any changes in Jessica’s behavior during the day, her older sister awoke to a completely different situation later that night. Jessica was found “foaming at the mouth and twitching” in her bed, recalls her mother, Marisol.

After being rushed to the hospital, Jessica underwent many tests including an electroencephalogram, or EEG, which measures and records the electrical activity of the brain and detects patterns that are indicative of epilepsy. Though no abnormal wave patterns were detected at the time, Jessica did have a family history of seizures, so without an exact diagnosis, she was started on a drug to help control her seizures. But each seizure she experienced afterward differed in frequency and type. Her family kept records detailing the type of seizure she had and how long each one lasted. Unfortunately, despite being on medication, Jessica’s seizures weren’t improving.

It wasn’t until Marisol Pino was watching a Lifetime movie about epilepsy that she learned about a unique diet that helps certain children with epilepsy.

When Seizure Meds Don’t Work

Jessica Pino

Most people with epilepsy can either become seizure-free or experience a decrease in how often and how long their seizures last with the use of a single drug. While some may struggle to find the right medication, many doctors and parents seek non-pharmacologic options. The most promising one is the ketogenic diet.

The ketogenic diet is used to treat what’s called refractory seizures, which are seizures that are not responsive to medications, according to Dr. Atluru. Children who fall into this category usually have failed to respond to two or three medications. The chance of a fourth drug working is pretty slim and other alternatives are considered.

The ketogenic diet consists of fatty foods (i.e., butter, mayonnaise, eggs, bacon, tuna in oil).  It’s measured in a 4:1 ratio, meaning for every four grams of fat, patients receive one gram of carbs and one gram of protein; so, food such as bread, pasta, fruits and vegetables are strictly limited, and the person’s total calories and fluids are also restricted. At every meal, the food has to be measured with a special scale the dietician will have the child’s parent buy.

Four years after Jessica’s first seizure, the Pino family moved to Nassau County to find better care for their then-8-year-old at Schneider Children’s Hospital in New Hyde Park. There, Jessica was given the green light for the ketogenic diet after experiencing a very dangerous type of seizure called status epilepticus, in which she experienced a prolonged seizure that was uninterrupted even after her parents gave her Diastat (a rectally administered drug used to immediately stop extended seizure episodes).

“Any seizure beyond 30 minutes…that’s a neurological medical emergency,” Atluru explains.

Trina Gill, a Pittsburgh mom, can relate to the Pino family’s ordeal. She and her husband also recall the frustrations of finding the right treatment for their daughter, Lauren. Eight-year old Lauren experienced her first seizure in December, 2006.

“She had a tonic-clonic seizure in our kitchen. She fell to the floor and convulsed for about five minutes and that was our entrance into the world of epilepsy,” says Trina. In hindsight, she believes that Lauren may have been experiencing absence seizures even before this attack.

Lauren was taken to Children’s Hospital in Pittsburgh, and to Trina’s surprise, Lauren was released with a clean bill of health. After demanding Lauren be evaluated by a neurologist, the girl was eventually given a diagnosis of benign absence epilepsy. But, as Lauren’s seizure disorder progressed, it became apparent that she was having multiple types of attacks. It took seven different drugs in three months before the Gill family demanded a 24-hour EEG, which revealed that Lauren was experiencing 300 seizures a day while on medication, and she was having five different types of seizures. Shortly afterward, Lauren was started on the ketogenic diet.

Another 24-hour EEG showed that Lauren “went from having 300 seizures to four in less than three months,” Trina says. “It was pretty dramatic and it happened pretty quickly.”

Dr. Atluru says, “These [intractable or refractory seizures] do not respond well to seizure medications, and that’s when we think about the diet.”

Understanding the Ketogenic Diet

As noted earlier, the ketogenic diet is a strict regimen that’s high in fat relative to the amount of carbohydrates and protein. Although its exact mechanism is unclear, the diet helps to control seizures in some people with epilepsy. With the child carefully monitored by a medical team, a dietician works closely with the family to assure that the right amount of fat, carbohydrates and proteins are consumed to maintain the fine balance. Though a modified version of the Atkins diet is also used, the ketogenic diet strictly restricts and measures caloric, fluid and protein consumption.

The diet produces ketones: byproducts our bodies produce when we burn fat. It is an energy source for the brain. Our bodies normally use carbohydrates, which we get from foods like bread and pasta, as its energy source. But the ketogenic diet is extremely low in carbohydrates resulting in fat becoming the body’s main source of energy.

Mei-Hua Chen, a pediatric nutritionist at Schneider Children’s Hospital, says that when discussing the ketogenic diet with interested families she covers the “five Ws”: What is the ketogenic diet? Who can follow the diet? Who can prescribe or discontinue the diet? And when and where should the diet be initiated?

After a child has been admitted to the hospital to start the diet, he or she is monitored for a few days before being discharged. “Once the child is discharged, then he or she will return within two weeks,” Chen says, and then the child is periodically followed by a medical team to monitor progress.

Families must also carefully monitor children on this diet because of “cheating” or sneaking food that will disrupt the diet’s delicate balance resulting in a seizure episode. Atluru alludes to this when she says that even “half of a cookie” while on the ketogenic diet could elicit a seizure.

“I have one patient who’s 10 years old and the family has to keep the food out of reach,” says Angela Samuels, pediatric nutritionist at Morgan Stanley Children’s Hospital at New York-Presbyterian Hospital.

To minimize issues of noncompliance, Samuels suggests trying to take your child’s favorite foods to the dietician to create treats he or she will enjoy while still adhering to the guidelines of the diet. For instance, a pizza made of pepperoni, cheese and sauce without the crust. “There are recipes out there so that the child doesn’t have to feel left out,” Samuels says.

There are a lot of people taking care of children with epilepsy—when the parents are at work, the grandparents, older siblings or home-care professionals may also be involved in the child’s care.  So, it’s important to assure that all caregivers understand the importance of staying on the diet. To minimize any loopholes in the diet, Samuels says, “I always try to make sure that everyone that’s taking part in the care of the child comes to the appointment to get the education also, and not just the parents.”

Though the diet offers no guarantee that a child will be seizure-free, Chen says, “Most parents [are] pleased with the improvement.” The child may experience seizures that are shorter in duration, less frequent or less intense, and there may be a decrease in the dosage or number of medications being administered. The diet works differently in each child.

Depending on the outcome of the diet, families and the medical team decide on whether to continue with it. Children who remain on the diet are followed for two years—in which they must be seizure-free—–before they can begin to be weaned off of it. Sometimes it’s decided that it’s best to keep the diet going longer than two years.

Some of the long-term effects of the diet include weight gain, constipation, dehydration, kidney stones and high cholesterol. Jessica Pino developed kidney stones during her time on the diet, but was monitored and treated. Her parents expressed the difficulties in remaining diligent (Dr. Atluru calls it “labor intensive”), but were pushed to remain strong and driven at the prospect of their daughter being seizure-free—which she has been, since 2004.

One of the major changes parents notice in their children when beginning the diet is that they become more alert and active.

“It works well if not better than medicine,” says Atluru of the diet. “These children that we use it for often tend to be sedated, lethargic, and dysfunctional, all because they are on so [many] medications.”

After the diet starts, children can begin to be weaned off their medications. As the children are taken off drugs, Atluru says, “they are more alert, their behavior improves, and they are able to function better.”

After a second EEG brought continuing issues to light, Lauren Gill had Vagus Nerve Stimulation Surgery, which involves implantation of a pacemaker-like device. The results have been very promising.

What if the Diet Isn’t For You?

For families who desire a different option when medications don’t work, there are alternative therapies.

Epilepsy surgery is an option for some people with refractory seizures. Recent studies have shown that the earlier surgery is performed, the better the outcome. When tests reveal that seizures come from well-defined areas of the brain (that won’t affect speech, language or hearing) then surgery can be considered. The results of surgery, like all epilepsy treatments, vary—there are no guarantees. Post-surgery, some children may still need medication to help prevent or minimize the frequency of future seizure episodes, while others may not.

A specific type of surgery known as vagus nerve stimulation (VNS) helps control intractable seizures by sending electrical impulses to the brain through the vagus nerve—which carries sensory information about the body to the central nervous system—through a battery-operated device that delivers short bursts of electrical impulses. It is believed that by stimulating the vagus nerve, electrical energy is discharged toward the brain, resulting in an interruption to abnormal seizure activity. This helps to reduce seizures by 30 to 40 percent. The surgery doesn’t involve the brain; rather, the device is implanted under the skin of the chest like a pacemaker. Wires attached to the device run underneath the skin to the left vagus nerve in the neck.

Lauren Gill underwent VNS surgery because her second EEG revealed that she was still experiencing “background activity.” She was still having difficulties in school and had developed autistic-like behaviors. All of these stopped when she started VNS.

“It was extremely dramatic and extremely fast and all those autistic characteristics, they were all gone,” says her mother. “She was reading again, she was counting and saying her ABCs and functioning and paying attention in the classroom.”

Lauren, like others with epilepsy, experiences auras, which is a sensation or motor phenomenon that foretells the coming of a seizure. Those people can then prepare for the seizure or activate their VNS device if they have one.

But there’s more to the device than controlling seizures. There’s a psychological aspect to it, as well—the device provides a feeling of independence and control.

Though Lauren’s last EEG in December still showed signs of seizure activity, she has come a long way from 300 seizures a day, and her parents are hopeful that her next test will come back normal.

Promoting Epilepsy Awareness

As a community educator, Janet Romeo of the Epilepsy Foundation of Long Island says, “One of the catchphrases that people use is, epilepsy is ‘not who I am, it’s what I have.’” And that motto rang true for a group of local parents who founded the organization many years ago.

In 1953, the Epilepsy Foundation of Long Island (EFLI) was organized by parents whose children were diagnosed with the disorder. They realized that there was so much misinformation circulating about epilepsy—not to mention the stigmas and myths—that the foundation would be an opportunity to create greater awareness about the disorder so that affected children wouldn’t have to feel the need to hide their condition.

Romeo says that epilepsy is “a unique condition, in that it has this added difficulty of having had the stigma attached to it and people wanting to hide it in the shadows.”

And 55 years later, the EFLI has become one of the leaders in educating the public and bringing greater awareness to the community about seizures.

Through the Foundation’s Office of Development and Community Relations, Romeo helps to educate children throughout the school system about epilepsy, because they are going to be exposed to children with the condition. It’s very likely that they may see a classmate experiencing a seizure in class. It’s important that they understand what’s going on and what to do, such as remain calm, time the seizure if possible, lay the person on a flat surface and turn his head to the side, put something soft under his head, do not restrain the person, call an ambulance, don’t attempt CPR, do not leave the person alone.

“Do not stick anything in the mouth, including the fingers. They won’t swallow their tongue,” Dr. Atluru says of what not to do.

One epilepsy awareness school program is called “Kids on the Block,” a puppet show performed in elementary schools. “We gear it toward the third grade, but it doesn’t have to be limited to the third grade,” Romeo offers. “In the skit, one of the puppets, Ricky, has a grand mal seizure and his friend Joanne is with him and she doesn’t know what to do.  And when he wakes up from his seizure, he goes on to explain what she should do the next time he experiences a seizure.  At the end of the performance, Ricky, the puppet, stays in character and answers audience questions.”

Other programs include “Take Charge of the Facts,” which is usually done in middle and high schools. Romeo goes into the health classes as a guest speaker, where she shows a video made by a group of teens with epilepsy demonstrating the different types of seizures, First Aid responses, and social issues faced by people with seizure disorders. The teen video focuses on the idea that epilepsy sufferers don’t want to be treated differently.

There’s also a program to help school staff recognize and learn how to respond to children experiencing seizures. Teachers and school staff are introduced to the psychosocial aspects of epilepsy and how it affects children. Last, but not least, an educational workshop is held for nurses twice a year—one in Nassau County and the other in Suffolk.
Though epilepsy affects each person differently, it undeniably changes every life it touches. With support, tailored treatment and early intervention, people with epilepsy can begin to seize back their lives.

“Lauren loves life,” says her mother.  She wakes up every morning and says, ‘Today is a gift from God.’”

Part 23 of Our Award-Winning Series “Our Children’s Health”

He has earned a Guinness World Record for that feat, frequently places high in national gaming competitions, does appearances with the likes of rapper 50 Cent, was scouted out for corporate endorsements that will one day pay for his college tuition and has a documentary about him currently in production. Still, his father, Victor De Leon II, says “He’s just a normal kid” who happens to be an expert at Halo, a first-person science fiction shooter game.

But is it all too much for someone so young? “I’m used to it, I’ve been doing this for seven years,” says Lil’ Poison, taking a break from his two-hour-per-weekday practice time with his teammates. Having just made a comeback after taking a year’s sabbatical, he also rattles off a list of other interests: swimming, trombone, basketball, paintball, jujitsu. The list goes on.

“He’s very good at managing his time,” says his father, noting that his son’s grades are above average. “Not a lot of adults can do that.” In the wake of the latest study that suggests nearly one in 10 kids between ages 8 and 18 shows signs of video game addiction, and that those addicted have trouble paying attention at school, receive poorer grades and have more health problems, it seems that Lil’ Poison is not one of the kids to worry about.

Leave that to those who take it too far, like the half-dozen teens who robbed a man in New Hyde Park and later brandished bats, a broomstick and a crowbar at drivers in Garden City last June, then told Nassau police they were imitating Grand Theft Auto. But the GTA Six are the opposite end of the spectrum. It’s those in the middle, who are believed to simply play video games so much that they can’t function in real life—and whether being addicted to video games can be a clinical diagnosis—that is the focus of the latest debate.

GAME ON

Well before Lil’ Poison made his pro gaming debut, Dr. Douglas Gentile, director of research for the National Institute on Media and the Family (NIMF) in Minneapolis, Minn., has been researching video games’ effects on children.

“I started studying it to basically show that this isn’t like a real addiction because a real addiction means you have to be damaging your functioning,” Gentile says from his office at Iowa State University, where he is a professor of psychology. “It turned out that I was wrong.

“If this at some point becomes a classified diagnosis along with drug addictions and pathological gambling, for example, it will probably be classified as an impulse control disorder,” he says, noting that he prefers the term pathology to addiction (The title of the study, published online two weeks ago, is “Pathological video game use among youth 8 to 18: A national study”).

“You know you should do your homework, but you can’t control the impulse to play the game instead,” he says. Pathological gamers play twice as much per week than non-pathological gamers, the difference between 12 and 25 hours weekly, he says. He is careful to note that “the problem isn’t the games; the problem is the way they get used.”

Regardless, the NIMF has drawn the ire of the Electronic Software Association (ESA), although that is not surprising, as the two groups are frequently at odds.

“Like all forms of entertainment, computer and video games should be a part of a well-rounded lifestyle that includes healthy eating and exercise,” said Rich Taylor, senior vice president, communications and industry affairs for ESA, in a statement. “It is up to parents to determine when and how often their children should play any game. For our part, the industry already provides a wide range of tools and information, including timers and parental controls.”

ESA called the study a quest for headlines, but the harshest words came from the top ABC News pollster, Gary Langer, who criticizes the poll, conducted by Harris Interactive, in his blog. He called out Gentile for erroneously adding a sampling margin or error of plus or minus 3 percent when that notation was unnecessary because the poll was conducted online and therefore wasn’t a random sampling. He also criticized the methodology, as ABC News polls only use random samplings. ESA took Langer’s commentary as a debunking of the entire study.

Gentile admits he should not have added the margin of error line and will clarify that when the study is published, but says the findings are sound. That 8.5 percent of kids in the studied age group who appear to need clinical help should not be left to suffer in silence as a result of semantics, he says.

“This is really an attempt to obfuscate,” he says. “This national study actually comes up with a prevalence number that’s very similar to the other studies that have been done with smaller samples in different pockets of the country. In fact, it looks pretty valid because it’s not wildly out of line with what we’ve seen with other studies.”

BIT BY BIT

This debate is by no means new. It has been raging since the days of Pong, but because the graphics have grown more gory and sexualized over the years while the industry grew into a mainstay of pop culture, it has only gained steam.

Long Island has been the epicenter of the video game debate since before the advent of the Commodore 64, one of the first home computer systems. In the early 1980s, Ronnie Lamm, a mother of two from Suffolk County and then-president of the Middle Country School District Parent Teacher Association (PTA) council, became the international poster woman for the battle when she petitioned the Brookhaven town board for legislation restricting arcade games’ proximity to schools.

Local media outlets covered the story; then, national publications and networks picked it up—and ran with it. Before long, Lamm became the default spokesperson for the PTA and a lightning rod for calls of oversight and regulation across the country. She appeared on more than 180 television shows and 3,000 radio programs around the world. She voiced the concerns of countless parents, doctors and teachers, warning against video and arcade games’ potentially negative effects on children.

Back then, it was arcade games that were popping up in hotel lobbies, pizza places, bars, strip malls and luncheonettes that were catching kids’ attention, not the latest incarnation of high-tech gaming systems like Xbox and PlayStation. Lamm says her efforts were born out of a shared mission between parents: protecting the children.

“It was a very interesting time of questioning,” Lamm, now a grandmother, tells the Press. “This is something new, something that parents were embracing, possibly for the wrong reason, and school districts at the time had concern about children cutting out of school to go to [play] video games. But our initial concern was the safety of children in bar lobbies, in luncheonettes. Where were these machines? Were they in the backroom? Were they being watched? Children are hanging out here… What was their supervision?”

As a greater awareness of the issues surrounding video games grew and Lamm’s questioning spread to a global audience, it spawned even more questions about the potential negative effects video games posed to impressionable young children. Doctors and parents from around the world weighed in to Lamm, raising concerns about desensitization and addiction.

“We heard from psychologists and [about] the idea of desensitizing children to killing,” says Lamm. “If you press a button and someone dies, it’s a lot different than hearing the screams, seeing the blood, smelling the decay.”

Lamm says that the next time she heard the desensitizing issue brought up on the national stage was in the wake of the 1999 Columbine High School massacre, in which two students murdered 13 people in a shooting rampage. Some analysts have contended that the killers’ shared interest in playing violent video games could have contributed to their desensitization, and, consequently, their actions and the massacre.

Lamm, who is no longer actively involved in the debate, stresses her belief that video games in and of themselves aren’t the whole problem, but rather just a piece of the greater puzzle.

“I don’t think that any one issue is going to cure the ills of the world,” she says. “I think [we need] good parenting, alert parenting, alert schools… I think Columbine has definitely brought some of this to the fore.”

REMATCH

Video games are a booming business. The industry reported annual U.S. sales of more than $42.6 billion in 2008, up from annual sales of more than $35.9 billion in 2007—an 19 percent climb, according to the NPD Group, a consumer and retail market research firm.

It’s also an evolving field. Colleges and universities across the country have begun adding video game-oriented courses to their curriculum, offering enrollees the chance to design, program and create their own video games.

Hofstra University offers a Video Game Development Summer Camp, where would-be video game programmers between grades 2 and 9 can learn video game design, development, programming and computer modeling and animation. It also hosts a Video Game Design Intensive Workshop for kids in grades 2 to 12.

Pittsburgh’s Carnegie Mellon University offers students a unique, two-year Masters of Entertainment Technology degree. The program, through Carnegie’s Entertainment Technology Center (ETC), features both video game and interactivity components, says Donald Marinelli, executive director of the Center. Students create specialized interactive games that teach players skills, ranging from the art of the Chinese alphabet to flight simulators to getting kids to exercise, among other projects.

Marinelli says the Center has two steadfast rules regarding the video games created there: No murderous violence and no pornography. He’s quick to point out, however, a different reason for the restrictions than those important to video game activists: “We’re not censoring them; what we’re saying is, can you get more imaginative?”

Marinelli, a professor of drama and arts management who co-founded the Center in 1999, is critical of Gentile’s study. He says it’s common sense that if somebody’s pathologically playing video games to the exclusion of everything else, they probably might be antisocial and have other problems. The same would go for someone pathologically watching football games. Or someone who pathologically eats hummus, he adds.

“As far as that report goes, they found out that if you’re a pathological player of video games you’re a wacko,” he says. “It’s like, no sh*t, Sherlock.”

END GAME

Perhaps it’s programs such as Carnegie’s ETC that are another part of the puzzle that Lamm mentions—transforming a fascination with video games into a lucrative profession in a growing field through specialized skills that create new technology that can better society.

Peter Justeson, a 26-year-old graduate of Carnegie Mellon’s ETC and Stony Brook University (and former video game critic for the Press), is a perfect example of this. Captivated by video games throughout his youth, he sought out schools with good reputations in computer science, with a goal of working toward game development. He’s currently working for developer Avatar Reality, living near the beach in Honolulu.

“Video games actually offer a lot of potential benefits to society,” says Justeson. “Some games like Dance Dance Revolution and Wii Fit are ironically encouraging people to exercise more, there’s a training program for surgeons that uses video games to improve their hand-eye coordination and dexterity, and many people are exploring the educational potential that video games offer.

“Still, a lot of the potential benefits of games are even now just potential because games are largely unexplored beyond an entertainment medium,” he adds. “With the increased attention and broadening audience, I expect to see a lot more experimentation with what can be done with games as a medium.”

When it comes to reports such as Gentile’s, even a former video game activist like Lamm agrees that it’s what society does with the findings that’s the most important.

“The study in itself is of no value unless parents have read it,” she says. “Parents will now take the initiative.”

Part 22 of Our Award-Winning Series “Our Children’s Health”

It seems that in 2008, autism really hit the media spotlight. I don’t think that a month has gone by without a major autism story in the print press or on TV and radio. And for the most part, that’s a good thing, because it is all about awareness. The more that people know about the disorder and its epidemic-type growth, the better it is to help understand what these children need and how to help them.

But, the reason for some of the press on autism has not always been positive.

In early February, Adam Jasinski a contestant from CBS’s Big Brother 9, made a very insensitive comment, calling children with autism “retards.” However, I found what CBS has done to be much more offensive: The network could have bleeped out the whole remark, but instead, for ratings, they played it up with a dramatic scene and never apologized for choosing to air the remark. Jasinski said that he can call the children whatever he wants because he works with them all day long at an organization called the United Autism Foundation in Forth Lauderdale, Fl. As it turned out, the United Autism Foundation was reviewed by the Florida attorney general immediately following the breaking of this story, and it was revealed that Jasinski never worked with any children with autism, he was a mere telemarketer soliciting donations from businesses for autism-related projects that were never established. While making the comment about children with autism being retards, Jasinski also said that if he wins he will donate parts of his winnings to the autism community. Adam did win Big Brother 9, and as far as the donation, I guess Adam didn’t really mean that he would actually make it. You might want to “friend” him on FaceBook and ask him about it.

While over the years, study after study has shown that there is no link between autism and vaccines, in March, for the first time, the federal Health and Human Services Department conceded in Vaccine Court (part of the U.S. Court of Federal Claims, which administers a no-fault system for vaccine injury claims) that too many vaccines given to Hannah Poling triggered her to have “autism-like symptoms” and regress from typical behavior. This must have been one of the most outspoken and heated debates in every news media outlet for days to follow. The Centers for Disease Control and Prevention (CDC) immediately followed up with a statement by its director, Julie Gerberding, M.D., pointing out that the benefits of vaccines far exceed their risks. Gerberding said, “This does not represent anything other than a very special situation.”

The very interesting outcome from days of continuing media coverage is that no one at any point ever discussed the fact that autism is officially diagnosed by autism-like symptoms; one doesn’t just have autism-like symptoms without having autism. Later on in the month, while interviewed by CNN, Gerberding made another interesting statement: “Now, we all know that vaccines can occasionally cause fevers in kids. So if a child was immunized, got a fever, had other complications from the vaccines, and if you’re predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism.” But not autism? Considering that this is the precise agency that has been conducting study after study not finding a link between vaccines and autism, is it fair to ask if there was ever a link found between vaccines and autism-like symptoms?

In June, autism activist Jenny McCarthy lead the Green Our Vaccines rally in Washington, D.C. Thousands of people showed up from all over the country to rally with the former actress and bestselling author who has a child with autism. Along with the controversial Thimerosal in vaccines, McCarthy is also campaigning to remove all toxins from vaccines, including aluminum, ether and antifreeze, and she points out that, yes, there is still mercury in these shots. While McCarthy openly admits that she isn’t against vaccines, many still question her motives and criticize her. Why question McCarthy and criticize her for using her celebrity to bring attention to the toxins in the vaccines that we’re using to vaccinate vulnerable infants and toddlers? Most of us are not against vaccines in general, we’re just concerned about the lack of safety guidelines and scheduling of these inoculations. One would think that people—all people—would be outraged when they found out that their perfect little baby was just injected with aluminum, ether or antifreeze. If parents don’t act as one and demand cleaner vaccines, we will never have them. Why aren’t millions of letters and phone calls being placed with outrage to the pharmaceutical industries adding these toxins? And more importantly, why aren’t the pediatricians concerned about injecting these toxins into our babies?

Evelyn Ain with her son, Matthew, 7, who has autism.

In August, many of us were shocked when Conservative syndicated radio talk-show host Michael Savage attacked parents of children with autism and attacked the children themselves. He called these children “brats” and blamed their conditions on the lack of good parenting and the absence of a father figure. That’s what this expert says is the cause of this terrible epidemic that is affecting at least 1 in 150 children. Shortly after that, “comedian”/actor Denis Leary also insulted children with autism by calling them “stupid” or “lazy” or both in his new book. While it’s sad to think that people in the public eye use slurs about autism to further their own fame and ratings, it’s all too common. We know autism is a very difficult and complex lifelong disorder, yet not only are these people mocking our children who suffer and struggle every second of every day, there are many out there who are uninformed enough to believe what blowhards like Savage and Leary say. Yes, we can say that these men and those who believe them are ignorant and stupid, but isn’t ignorance and stupidity what hurts our children most? Don’t our children have enough to deal with as it is?

Savage ultimately apologized for his statements but couldn’t do so without further angering parents by having experts on his show who agreed with him, repeating an archaic belief that cold, bad mothering known as “refrigerator mothers” is what causes autism. Savage, on behalf of the autism community: Apology not accepted! The good news is that the autism community and other outraged Americans swamped Savage’s radio show sponsors, and one by one, they dropped their support of Savage’s show. So, we do have clout. Watch out. Leary also apologized, saying his statements were misconstrued. There was nothing to misconstrue: Your stupid, hateful, hurtful words are there in black and white for all to read.

The subject of autism also made it to the 2008 presidential campaign. Senator John McCain was the first presidential hopeful to talk about the disorder, which lead to discussions between him and Barack Obama at the final debate at Hofstra University about the importance of the epidemic and funds needed for research. But it seems that as soon as the election was over, so were any discussions of autism.

It’s hard to ignore autism today. There are more and more children who are diagnosed, and we still have no idea as to the real cause of the epidemic. Whether or not vaccines cause autism or not remains one of the most controversial arguments within the autism community. I find it extremely difficult to understand why the Combating Autism Act Bill of 2007, which was supposed to provide $900 million for autism research, hasn’t been funded yet.  Parents struggle daily, there aren’t enough appropriate school placements, and there are much less once our children turn 21. Everything is much more difficult when dealing with raising a child with the special needs that accompany autism. While understanding that our economy is falling apart and major state and federal cuts must happen, I am appalled each time I hear of school and special education budget cuts. Our children’s futures should never end up on the chopping block. We, as parents of children with many special needs, have a responsibility toward our children, and obviously some people may just not understand how great of a responsibility it really is.

It is Autism Awareness Month, so let’s help spread the word on what is needed to help these children and their families, and not the uninformed, mean-spirited rantings of third-rate celebrities.

Evelyn Ain is the director of Autism United (www.autismunited.org), the publisher of Spectrum Magazine and a frequent contributor to the Long Island Press.

If not, you might want to catch what is known as a “religious sincerity hearing.” And if you want one close to home, try the Bayport-Blue Point Union Free School District (BBP), and its “Grand Inquisitor” David M. Cohen, BBP’s legal counsel.

First, let’s play semantics.

“It’s not really a hearing,” says The Grand Inquisitor. “It’s a meeting.”

OK, then—at BBP, a “religious exemption meeting” appears to be a sometimes very mean-spirited, frustrating and contentious gathering that is meant to determine a parent’s religiously based and sincerely held belief behind not wanting their child immunized. A growing number of parents are against vaccinating their children for a variety of reasons, ranging from religious tenets to the belief, by some, that vaccinations cause a variety of health problems in children, especially autism.

As the autism rates grow to epidemic proportion (it is now officially 1 in 150, although many believe it is higher) and many parents tie the onset to inoculations, studies report that there is no connection between vaccines and the rising disorder. But studies have been wrong before. And the medical and pharmaceutical lobby, which sponsors most of these studies, is a monster opponent to battle. Besides, tell that to parents like John Gilmore, executive director of Autism United, whose now-9-year-old son Luke—who was a typically developing child prior to receiving his 12-month vaccination—became autistic immediately afterward. The Gilmores are not alone.

But it’s not about autism, it’s about the safety of vaccinations. “Whether or not vaccines cause autism is still an ongoing unresolved issue,” says Gilmore. “Regardless, we know for a fact that vaccines can cause a wide variety of injuries. The government has even set up a vaccine injury program. Parents have a right to be concerned.”
However, the law in New York regarding vaccinations is very clear: Children must meet immunization standards before entering public school, or they can’t attend school. Humayan Chaudhry, D.O., the Suffolk County health commissioner is insistent about the efficacy of vaccines. “Vaccines work and should be administered on schedule,” he says, citing the dramatic decline in potentially deadly diseases like measles.

In New York, children must be immunized against poliomyelitis, mumps, measles, diphtheria, rubella, varicella, hepatitis B,  pertussis, tetanus, and, where applicable, Haemophilus influenzae type b (Hib) and pneumococcal disease.

Unless, that is, they have a medical or religious exemption.

There are currently 48 states that grant religious exemptions, often no questions asked. The parent writes a letter and it is generally accepted. Not in New York. In the Empire State a sincerity hearing (also known as a “truth hearing”)—sorry, meeting— is required. The other state is Illinois.

What this sincerity meeting entails is well observed in one that was videotaped in BBP in September, 2008, that is making the rounds on YouTube conducted by Cohen, a partner in Cooper, Sapir & Cohen, based in Melville, and held to determine Rita and Ron Palma’s sincerity. Basically, Cohen grills Palma and her husband, snaps at them when he doesn’t like their answer, cuts them off when he has something to say, and yells and bellows depending on how deep under his skin the Palmas are getting. But that’s not the unsettling part. The problem here is what he is asking them. It is all about their religious beliefs, which is at the heart of First Amendment rights. As in, “What is God’s plan as far as you’re concerned?”, which he asks about a half dozen times.

Rita Palma, her husband, Ron, and their three sons during a recent trip to Mexico.

The Palmas’ lawyer, Robert Krakow, is also the subject of Cohen’s disdain, as Krakow often stops the interrogator with statements like,       “That’s inappropriate.”

It is the ugliest kind of inquisition to be privy to. As this reporter observed people watching the video, three responses became clear: It is a disturbing example of abuse of power. It is an insult to common sense and decency. And it is just plain scary.

Here is this lawyer, with no theological or psychiatric background, seemingly badgering this mother of three, so that he might determine her religious conviction.

“There is no constitutional, defensible way that someone like Mr. Cohen can question and reach a judgment and conclusion about these types of things,” says Gilmore, who has seen the video, and has worked with other parents involved in similar hearings. “You’d expect that from the Taliban. Not school districts.”

Rita Palma is extremely articulate (this is her second round with Cohen after a previous hearing and months of paperwork going back and forth) and she has turned her fight into her livelihood—she started My Kids Choice, a parents’ advocacy group. But the bigger question seems to be how ordinary parents might defend themselves against an argument that many believe isn’t well-founded in the first place.

Cohen: “Do you blame God for illness?”

Or: “Didn’t God provide the wherewithal for us to create vaccines?”

Or: “Do you talk to God?”

What are questions like this doing in a public school setting?

At one point, the principal of James Wilson Young Middle School, where Palma’s children attended, Susan Haske, whom Palma described as “emotion-free” at the hearing, actually asks Ms. Palma to expand on a psalm she quoted.
“We were treated worse than common criminals,” says Palma. “How can anyone judge another’s relationship with God? We were interrogated like we committed a crime.”

“Just outrageous,” says Krakow.

Brush up on your Bible studies if you want to attend a Bayport school…

In The Beginning…

The law that everyone is fighting over is actually grounded in local history. Sherr v. Northport-East Northport Union Free School District was a 1986 case brought by an L.I. doctor who didn’t want to immunize his kids—Alan Sherr, who now runs the thriving holistic healthcare practice, Northport Wellness Center.

Nowadays, children are bombarded with vaccines. Within 24 hours of birth, children receive a hepatitis B vaccine. Hepatitis B is contracted through drug use or sexual intercourse. Why a newborn receives that vaccine at such a vulnerable stage is mind boggling. The pertussis (whooping cough) vaccine is given at 2 months old, and four more times throughout the next two years of a child’s life, in a combined vaccine for diphtheria, pertussis and tetanus (DPT). Another required vaccine is the one for measles, mumps and rubella (MMR), which is administered at 1 year old and then followed by a second dose. All in all, by the time a child enters school, they have received 18 to 22 vaccinations incorporating about 56 different antigens (substances that prompt the generation of antibodies) over a period of four years.

“I tried to create an opportunity to not vaccinate my kids,” Sherr tells the Press. Sherr’s anti-vaccination stance was grounded in his scientific and medical background and beliefs. At that time there was no religious sincerity exemption; a parent had to belong to a recognized religious group like the Jehovah’s Witnesses, 7th Day Adventists or Christian Scientists. But since there were no grounds for a philosophic—conscientious—objection, he decided to join a “mail order” religious group, the Missionary Temple at Large, Universal Religious Brotherhood. The school district saw through the ploy and fought Sherr and another local family (they were patients of Sherr’s) whose religious belief was bona fide, and refused their request.

Sherr and the other couple, Louis and Valery Levy, brought suit in U.S. District Court for the Eastern District of New York. While the Levys were allowed their exemption, Sherr was not. But something very important was gained. The court found that New York’s limitation of the religious exemption “violated both the Establishment and Free Exercise clauses of the First Amendment.” The law was changed to a third option: religious sincerity—the very battle that Palma and other New York parents are now facing.

“A religious belief is not so far from a philosophic belief,” Sherr reminds us. Nineteen states now allow philosophic exemptions.

“What they’re doing in Bayport is completely illegal and it infringes on the right to freedom of speech and religion,” Sherr says.

Genesis

James March, as the president of the BBP board of education, might seem like the bad guy to some, but he is caught between the proverbial rock and hard place. He needs to follow the law, but it’s a law he says he’s not fully behind. In fact, he agrees, in part, with Sherr.

“The state has put this in the board of education’s hands to determine religious and medical exemptions and the need to submit proper inoculations forms,” he explains. “I personally, and I can speak for the board of education, I would rather not be determining this. Is it [the hearings] subjective? Yes.”

And here come the nagging questions.

“Are there any theologians on the board?” he’s asked.

“No.”

“Any psychiatrists or forensic experts to determine sincerity and demeanor [amazingly, a judgment call that must be made in a sincerity hearing]?”

“No.

“I know the very negative comments we have received after people saw the video,” March explains, “especially from the Bible Belt. We’ve been called Nazis, the devil. But I’m just the face of this and I’m just following the law. I am very sensitive to these people’s concerns. Even Rita Palma’s.”

Palma’s reaction: “That’s even worse, if you are sensitive to it, and let it go on the way it’s been going on. The entire Board should resign. They are abusing their power and wasting taxpayers’ money. Shame on them for supporting this. And for the members who do not support this, more shame for not standing up against something that is so grossly wrong.  The whole world seems to disagree with this heavy-handed approach.”

And God Created Man

One person who seems determined to follow the law is David Cohen. And well he should, it’s his job.

He has been conducting hearings like this for 10 years, he says. BBP, by the way, has an extremely high appeals rate of close to 20 percent from parents who feel they’ve been wronged.

“They [BBP] have one of the most stringent testing policies,” explains Assemblyman Marc Alessi (D-Wading River), who is working on legislation to change the religious sincerity laws.

But until then, it is Cohen’s mandate to assess religious sincerity and the parents’ demeanor.

After watching the video, one wonders where the limits are as Cohen asks the Palmas very personal questions about their religious beliefs that are obviously upsetting, insulting and infuriating Rita. There is a blur between First Amendment rights and the division of church and state. Ron Palma and Krakow, who keeps a balanced, cool head throughout, are also losing patience.

The nagging questions return: “Mr. Cohen, are you an expert in theology?” this reporter asks.

“No.”

“Are you a psychiatrist or forensic expert?”

“No. I’m a lawyer.

“Believe me,” Cohen explains, “the school board would be very happy if these decisions were not made by them.”

“But what about you? Would you be happy?”

“Me, too,” he answers.

Cohen isn’t too popular in some circles around the Island. Stephanie Moses, who also had a sincerity hearing at BBP, calls him “disrespectful, arrogant, curt, intimidating and disdainful.

“It’s un-American,” she says of her treatment.

Her request, like the Palmas, was rejected by the board, and she has since enrolled her child in Catholic school; ironic, since she didn’t pass Cohen’s “religious sincerity” threshold.

“He’s a self-absorbed, arrogant guy who feels he is God, savior, and judge,” says Sherr of Cohen. “It’s unfortunate because his role is to fulfill the law.”

But like sand in an oyster, because of his rejections and perceived insensitivity, and so many challenging his decisions, it could lead to some good news, like what happened with Sherr.

“It can cause the law to be challenged,” says Sherr.

Even March seems to hold his tongue when the subject of Cohen comes up.

“Yes, I’ve seen the video. I know. It looks brutal. Callous. Insensitive. But it was edited,” he says.

It wasn’t.

Alessi’s take: “It’s outrageous, They have a very onerous testing process.” But Alessi has some thoughts about Palma as well. He feels she didn’t serve her cause, because her religious defense wasn’t as strong as it could have been.

“It’s not like parents who have a cut-and-dry religious argument like, ‘I object to vaccines because the rubella vaccine is made of aborted fetuses.’”

One Nassau-based education advocacy lawyer who has dealt with Cohen says, “David Cohen is evil. He attacks people.”

“Channel your anger at the legislature, not me,” says Cohen about parents and others angry with his performance. “I would completely do away with what we are doing in Bayport. It would make things easier for everybody.”

And that seems to be what the district is headed toward. Their new policy, like that enjoyed by the majority of people in the country, is that religious sincerity requests would be submitted in writing, and only if there were outstanding questions would there be a hearing. Oops, meeting.

But why are people so angry at Cohen? “This is the way it is,” says Cohen. “Sometimes unpleasant questions are necessary.”

Let There Be Light

The argument between pro- and anti-vaccine advocates couldn’t be any more black and white. Pro-vaccine advocates point to the studies that consistently report there is no connection between vaccines and autism. Anti-vaccine advocates point to anecdotal cases, their own studies and the high number of vaccine-injury compensatory monetary awards. They also address the very powerful lobbies that support many of these studies.

March: “Some organizations out there say that there is a connection [between vaccines and disorders like autism], but medical facts have proven otherwise.” But whose medical facts?

The BBP’s board chief, March, says, “We are adamant about protecting the people in our schools, the students, the staff, women who might be pregnant or people who have compromised immune systems because of illness or chemotherapy.”

Sherr, though, says that’s just the point: “But those people should be vaccinated already, right? Why should they worry unless they don’t have faith in the vaccines? And then why should I vaccinate my children with something that they don’t have trust in and that I think could harm them?”

Dr. Chaudhry, Suffolk’s health commissioner, disagrees. “The focus is on population health.  You’re protecting the school, town, county, state, country.”

But vaccinations, some say, can help spread disease. “The most dangerous person to be near is a freshly vaccinated person,” says Palma. “They can spread the virus for a month and a half.”

There has been a recent epidemic of pertussis on the Island. How can that be if so many children—as much as 90 percent—are vaccinated?

Vaccinations are effective, yes, but are they protective? “No,” says Sherr, who believes vaccinations are the cause for the rise in prevalence of juvenile rheumatoid arthritis, juvenile diabetes, allergies, asthma, autism, learning disabilities and other developmental problems.

It’s important to note that most organizations and individuals concerned about vaccines are not completely against them. They want less, and not so many grouped together at the same time as they are with MMR and DPT vaccines.

“Many people feel you need a predisposition for the vaccine to have harmful affects,” says Autism United’s Gilmore, who wants to make it clear that he and his organization are not saying that vaccines need to be abolished.

“Just be more responsible about them,” he says.

Exodus

Marc Alessi is a young rising star in the New York State Assembly. When he was elected, he was a brand-new father who was being bombarded by information about whether vaccines were good or harmful. When elected, parents came to him with the same concerns.

So he started doing his homework.

He discovered that while there were no clear answers regarding the connection between autism and vaccines, one thing that was sure was that there were way too many documented cases of vaccine injury.

“There was evidence that DPT might have caused SIDS,” Alessi says, “and that the asthma epidemic could be caused by invading a young and susceptible immune system.

“I don’t want to scare parents off from getting their kids vaccinated, but I can’t rest easy if there’s a possibility that a population of children are being injured by being vaccinated.”

The fact is, the federally sponsored Vaccine Adverse Event Reporting System (VAERS), operated through the Centers for Disease Control (CDC), lists thousands of documented vaccine-injury cases, adding up to $1.9 billion worth of awards paid out by the Vaccine Injury Compensation Program, paid for by vaccine manufacturing companies. The former Federal Drug Administration (FDA) Commissioner David A. Kessler, M.D., has stated that he believed the number of vaccine injuries listed on VAERS is only 10 percent of the actual number of cases.

Alessi’s predecessor, Assemblywoman Patricia Acampora, had been working on a philosophic exemption bill, and Alessi took the ball and ran with it.

There are three bills in Albany that would address the problem of vaccinations and sincerity hearings.
Alessi has proposed a bill, A4886, that would allow a philosophic exemption. In other words, if a parent has a conscientious belief against vaccinating his or her child, whether secular or religious, they can get an exemption. Twenty large states like California, Pennsylvania, Ohio, Texas and Michigan, have a law like this. A majority of the American population has this right.

Alessi’s bill is in both the state’s Assembly and Senate, and many on both sides of the argument, from Sherr to March, are hoping it will pass.

Two other bills are in the works in the Assembly, and both are by Health Committee head Richard N. Gottfried (D-Manhattan). A880 would give more weight to a doctor’s note, for a medical exemption, and A883 would shut down religious hearings altogether. Schools would have no authority to question a parent’s religious sincerity.

Alessi doesn’t care whose bill passes, as long as one does, but he’s hopeful that it could be as early as the end of April or as late as June, when the Assembly session ends, that the legislation passes.

Sherr is not so optimistic. “Look at who’s against these bills,” he says: the powerful medical lobby and those deep-pocketed pharmaceutical companies. “They’re a formidable group to fight,” says Sherr.

As far as Palma goes, she’ll keep fighting the fight. Her second “truth test” was denied in October 2008 and she provided a note from her doctor stating that her son already had pertussis and could be harmed from the shot. The district rejected it. “I had him tested for titers [indicators of antibodies] and handed that in.” Two weeks ago, she  received a letter informing her that her son wouldn’t  be permitted in school.

“I will never let this go,” says Palma. “While it has not all been pleasant, I would not change anything. God gave me healthy kids—I’m paying Him back.”

It’s been five years since Stephanie Moses’ case, and she’s still enraged by her treatment by Cohen. “Who was he to play God?” she asks.

We might not all agree about whether vaccines cause autism or whether unvaccinated children provide a health threat in school, but what seems to be universally agreed upon is that two things must go: sincerity hearings and David Cohen.

Part 20 of Our Award-Winning Series “Our Children’s Health”

When Diane O’Connor adopted four children she had been fostering, she knew she had challenges ahead of her. Her previous experiences with foster children at her home in Upstate Albany had proven such kids often suffered from a variety of emotional and behavioral problems. This was understandable, given the abuse and neglect they had endured in their short lives. O’Connor had experienced past success helping foster children with their issues by using a number of techniques she had learned through foster parent education. But nothing prepared her for what she was about to experience with these children.

O’Connor’s two sons and two daughters, who lived with her since infancy and were officially adopted at the ages of 5 through 6 years, began to show signs of abnormal behavior at a young age. They were extremely impulsive, to the point of having almost no control. They exhibited extreme mood swings, sleep disturbances and developmental delays. They had trouble getting along with other children, and were incapable of playing nicely. They showed extreme frustration in certain situations and did not understand what was being asked of them. Scenes in public were common.

“I couldn’t take any of them to the store without a meltdown,” says O’Connor. “At school, they would take things from other kids not because they wanted and needed them, but just because they were there.”

None of the techniques O’Connor had successfully used on previous foster children worked with these kids, all of whom had the same behavior problems. Although this baffled her at first, she eventually learned the reason.

O’Connor’s adopted children were all suffering from Fetal Alcohol Spectrum Disorder (FASD), a condition that can result when babies are exposed to alcohol while in the womb. Children dealing with this condition, which runs from mild to severe, suffer from varying degrees of brain damage. The most severely affected also have damage to other areas of the body, including the heart and central nervous system.

FASD is widespread, more than people realize. The Centers for Disease Control (CDC) reports that approximately 1.5 in 1,000 children have Fetal Alcohol Syndrome, the most severe condition of the FASD spectrum. Three times that, close to 1 in 200 children, are under the wider FASD umbrella. However, FASD advocates claim that the number is closer to 1 in 100, and many experts believe that the number is actually much higher than that, since so many cases go undiagnosed.

The Spectrum

FASD is one of the most insidious and difficult-to-diagnose conditions affecting children and adults today. In fact, FASD is not a diagnostic term, but developed to be all-inclusive for all spectrums of disabilities that result due to prenatal exposure to alcohol, according to Kathleen Tavenner Mitchell, vice president of the National Organization on Fetal Alcohol Syndrome in Washington, D.C.

“We know today that there is a spectrum of effects associated with prenatal alcohol exposure,” she says. “It results in long-term brain damage.”

A wide variety of behavior issues make up the spectrum of disorders associated with FASD, depending on which part of the fetus’ brain was affected by alcohol. Signs of the condition range from the severe, clinically labeled FAS, to the less obvious that are within the FASD definition. FAS, believed to be the leading cause of mental retardation in the Western world, is usually associated with heavy drinking and includes growth deficiencies, abnormal facial features and brain abnormalities. Milder but devastating nonetheless are other aspects of FASD that manifest themselves in behavior problems and learning disabilities.

But Andrew Adesman, M.D., chief of developmental and behavioral pediatrics at Schneider Children’s Hospital in Lake Success, says women should know that there is “no minimal threshold of safety with alcohol consumption during pregnancy.” There are many variables associated with FAS and FASD that range from age of mother (it’s worse for an older mother), subsequent births (worse for a third child than a firstborn) and, of course, binge-drinking: “Having six drinks in one night is much worse than having one,” says Adesman.

“Bottom line,” he says, “drinking any amount of alcohol during pregnancy is a bad idea. Resist temptation, and reach out to professionals if you need help.”

Children born with FASD can suffer from a slew of issues, including memory problems; inconsistent performance; impulsivity; distractibility; disorganization; difficulty with abstractions, such as math, money management, and time concepts. They also may have cognitive processing deficits; slow auditory pace (they may only understand every third word of a conversation); developmental lags; and the ability to repeat instructions, but an inability to put them into action. One of the most difficult problems many FASD sufferers have is the inability to predict outcomes or understand consequences. They are often diagnosed as autistic, attention deficit disordered or hyperactive.

There are three main problem areas for those with the cluster triad of FASD: nervous system/developmental, interuterine growth and physical features (the distinctive facial abnormalities include thin lips, wide space between lips and nose, small eye openings, and small head size). All three abnormalities are found in children with FAS.

Dr. Adesman warns that some of these symptoms might be present at birth, some might appear when the child is older, and some might come and go.

“Laura” and her husband adopted a 3½-year-old boy in 1990, knowing he had been exposed to alcohol while in the womb. Because he seemed outwardly healthy, she did not realize how affected he was until she began to witness abnormal behavior.

“He was very destructive to our home and belongings. He destroyed TVs, VCRs and many other things,” she said. “He destroyed the walls in his room, the carpet and the lamp. He pulled the closet doors off the tracks, ripped the screen in his window, and threw toys out the hole in the screen.”

FASD can produce other problems in addition to behavioral issues. Many children with the condition suffer from epilepsy. Others have scoliosis, vision and hearing problems.

Not surprisingly, children with FASD have trouble getting through life, especially without early intervention. In most cases, they are not diagnosed with FASD but with a specific disability that is most noticeable. The fortunate ones are given treatment based on their individual problems. This can include therapy for Asperger syndrome, Tourette syndrome and attention deficit hyperactivity disorder (ADHD), as well as specialized teaching. Those who aren’t treated often fall between the cracks and go on to be adults who have extreme difficulty functioning in normal society. Secondary characteristics of FASD—the issues that develop if primary concerns are not addressed—include problems with anger, aggression, anxiety, withdrawal, lying, drug and alcohol abuse, depression and even suicide. Many end up in jail as a result of anti-social behavior.

Dangerous Behavior

Ask most women what they know about alcohol and pregnancy and they will tell you the two don’t mix. So why are so many children born with FASD? Some women are addicted to alcohol and can’t stop drinking even though they are pregnant. Others—the majority—think that having a drink now and then is OK. In reality, nothing could be further from the truth.

The notion that drinking during pregnancy is not a good idea became part of public consciousness in the early 1970s, when researchers at the University of Washington identified FAS. When it was first discovered, the condition was associated with heavy drinking, and seemed to be the consequences of alcoholism during pregnancy. The message was fairly straightforward: Don’t get pregnant if you are addicted to alcohol.

In 1981, the surgeon general issued an official statement on the subject, saying that pregnant women should limit the amount of alcohol they drink. This implied that some alcohol was OK as long as women don’t overdo it.

But in 2005, everything changed. Researchers discovered that even a small amount of alcohol during pregnancy can result in serious problems for the fetus. The surgeon general amended his warning, telling pregnant women and women who may become pregnant to “abstain from alcohol consumption in order to eliminate the chance of giving birth to a baby with any of the harmful effects of the Fetal Alcohol Spectrum Disorders.”

Despite this warning, many women still think it’s fine to indulge every now and then. This is not surprising given the inconsistent information doctors are providing to patients.

“We still have doctors out there advising women that it’s OK to drink during pregnancy,” said Mitchell. “The result of this misinformation is that 70 percent of the population has been exposed to some level of alcohol in utero.”

This shocking statistic is evidence of a vast number of uninformed doctors who clearly don’t know the facts about FASD.

“Both human and animal research has taught us that alcohol can cause significant brain damage to a fetus,” said Mitchell. “A lot of people struggle with mild learning disabilities and other issues, not realizing their problems could be related to alcohol exposure while in the womb.”

One of the difficulties in diagnosing FASD comes from the fact that many women do not want to admit they used alcohol during pregnancy. Often the only women who will acknowledge this behavior are those who have come to terms with a drinking problem.

“Charlene” is one of those women. The effects of alcohol on unborn children were not widely known at the time of her pregnancies in the 1960s, and Charlene drank a lot while she was carrying both her sons.

“I don’t recall drinking during my first pregnancy at age 16, but I may have, because drinking had become part of my life by then,” she said. “I married and was financially limited. I am pretty sure I drank at the very beginning of my second pregnancy before I was aware. I was drinking alcoholically by then.”

Charlene admits that even though her doctors didn’t tell her not to drink during pregnancy, she never would have admitted to the behavior even if they had.

Although neither of her sons were officially diagnosed with FASD, Charlene wonders if the problems they have encountered in their lives are related to her alcohol use during pregnancy.

“I can’t say my kids suffered any outward physical deformities, but they both have a lot of emotional damage,” she said. “My oldest son has been diagnosed with mental illness and my youngest son has anger management problems. I have wondered how much effect my drinking may have contributed to these problems.”

Of course not all women living with children affected by FASD drank during pregnancy. Many have unknowingly adopted kids who suffer from the condition. A large number of children adopted from orphanages in eastern European countries suffer from FASD, where alcohol consumption is much higher than in the United States.

Effects on the Brain

Although much has been made in the media of the effects of drugs like cocaine and heroin on a growing fetus (babies are born addicted to drugs and may have lasting neurological issues), the effects of alcohol on the developing brain have been shown to be much more devastating.

At San Diego State University’s Department of Psychology, researcher Edward P. Riley, Ph.D., is studying the effects of alcohol on the developing embryo and fetus, and the alterations in the normal development of brain and behavior. Riley’s research focuses on these changes.

Initially, researchers learned about the brains of individuals with FAS through autopsy studies, which showed diffuse effects throughout the brain. The autopsies were done on very severely affected children who died at a young age as a result of FAS.  But over the last 10 years or so, researchers have gotten a better look at the brains of individuals with the full spectrum of outcomes by using magnetic resonance imaging (MRI).

“What we found was that some brain areas were more sensitive to the effects of prenatal alcohol than others,” says Riley, the brain and alcohol researcher.

Dr. Riley and other researchers have pinpointed certain parts of the brain that seem most susceptible to alcohol. For example, while overall brain size was reduced, the effect was due to a reduction in the parietal and the frontal lobes, areas of the brain that control a variety of functions. The cerebellum, which plays a key role in cognitive function, also appeared to be affected. The corpus callosum, the major fiber tract between the hemispheres of the brain, was also shown to be particularly sensitive to prenatal alcohol.

According to Mitchell, the research that has been done on FASD is reason enough to warn women against having even one drink during pregnancy.

“From the public health perspective, we can’t say one drink now and then is not going to cause harm to the fetus,” she says. “A woman can have the best intentions and think she is just having one drink and it won’t do any harm. But that one drink might actually be three drinks. A Long Island Iced Tea or a large goblet of wine is more than one drink. And in animal studies, all it took was three drinks—considered a binge—to cause damage. Drink alcohol on the wrong day—on the day the face forms, or a certain part of the brain is developing—and you can end up with a baby with FASD.”

Help for Kids

The good news about FASD is that help is available for those suffering from the various problems that result from the condition. As awareness of the dangers of alcohol during pregnancy become greater, public agencies and private organizations are making themselves available to parents dealing with this condition in their kids.

Although New York State does not have an official program for children with FASD, the New York State Office of Alcoholism & Substance Abuse Services (OASAS)recognizes the existence of FASD and tries to help parents dealing with it.

“If a child has certain behavioral, sensory or disability issues, they can get help through different state service providers,” says Margo Singer, FASD New York State coordinator for the OASAS.

The state is also working toward raising awareness of FASD among professionals in the health care field, as well as working to prevent consumption of alcohol during pregnancy.

“Many professionals are not aware of FASD and need to know about resources and services we have available,” says Singer. “We also do a lot of training of staff to help them with early intervention. We are raising awareness at family planning agencies, special education centers, and juvenile detention facilities. We give them strategies they can use with those that have FASD, and information they can use to prevent FASD in childbearing-age women.”

Although children suffering from FASD have tremendous challenges, with the right help, many can live moderately productive lives. O’Connor’s four FASD children are adults now. One has her own apartment close by her mother’s home, while another is in an independent living program. One daughter just graduated from the Marine Corps after having been homeless for a time, and one of O’Connor’s sons recently moved from a psychiatric facility to a residential treatment facility.

“There is never a stop to the treatment,” says O’Connor. “It’s ongoing. It’s just tweaked for the person’s age. I’m just happy they all got their high school diplomas, and are not using drugs or alcohol. I consider that a success.”

For a full list of helpful resources, please visit www.longislandpress.com.

Diabetic teen Laura Burby injects herself with insulin five times a day.

  Part 19 of Our Award-Winning Series “Our Children’s Health”

By Liza N. Burby

Five times a day my 14-year-old daughter injects her arms, legs or belly with insulin; five times a day she sticks a needle in her arm to test her blood sugar levels. In both cases, she should probably be doing it more often.

Some mornings Laura’s blood sugar reading is so low I have to struggle to rouse her. At those times she looks at me without recognition. Other days her sugar levels are so elevated she feels ill and needs an extra insulin injection and glasses of water to restore her system to a more balanced state.

Wherever she goes—school, sleepovers, cheerleading competitions—Laura always has to worry about the delicate juggling act between maintaining her blood sugar and insulin levels and what she eats and how much energy she exerts. If she doesn’t, it could prove fatal.

This reality has been a part of Laura’s life since May 25, 2001. (All parents can tell you the date their child’s lives—and therefore their own—changed.) Unless researchers come up with a promised cure, this is likely to be her daily pattern for the rest of her life.

Laura has type 1 diabetes, also known as juvenile diabetes or insulin-dependent diabetes mellitus.

Alexa Yim, 21, a senior at Bryn Mawr College, says the “what ifs” are the only things that keep her motivated to take two blood pressure medications, one insulin shot and an oral medication, Avandia, daily. Though she’d like to be like her college peers, she has to watch her diet vigilantly and can’t drink alcohol at parties like her friends can. She has more sobering concerns than gaining a few pounds or getting a hangover. Yim worries about complications like blindness and amputation.

“I’m a violinist, so the thought of losing an arm keeps me in check, even when I’d rather not deal with the disease,” says the Woodside resident who plans a career in public health. Already she is coping with kidney and liver damage.

Yim doesn’t remember the day, but she does recall she had just completed a freshman biology session on endocrinology and realized she had been experiencing increased thirst and urination, as well as lethargy. She asked her mother to have her tested for diabetes, never expecting it would really be an issue. But her blood sugar level was over 500. That’s about 375 too high.

At age 14, Yim was diagnosed with type 2 diabetes, also known as adult-onset diabetes or noninsulin-dependent diabetes mellitus. It has become increasingly common for children to be receiving this adult diagnosis

.

Both girls are facing a lifetime of medical concerns, from heart disease to nerve damage. Both girls require daily medications or they have immediate discomfort, like lethargy, light-headedness and nausea. Yet both girls ultimately have very different diseases. But to hear the increased media coverage, which focuses only on the pairing of the words “diabetes” and “childhood obesity,” you would think there’s one universal disease afflicting children. And that somehow they all brought it on themselves.

The Reality

There are actually many forms of diabetes, including gestational diabetes, a risk factor of pregnancy; pre-diabetes, when a person’s blood glucose levels are higher than normal but not high enough for a diagnosis of diabetes; and even a type 1.5, also known as Latent Autoimmune Diabetes of Adults, a medically complicated cross between type 1 and type 2 diabetes that impacts adults.

Until about 10 years ago, it was generally thought that the only type of diabetes children and adolescents could get was type 1. But as you’ve no doubt heard, children as young as 7 are being diagnosed with type 2 in what the medical community calls an epidemic.

“A decade ago it was an almost negligible occurrence that a child would have type 2,” says Dennis Carey, M.D., section head of diabetes at Schneider Children’s Hospital in New Hyde Park. “But now because of the so-called obesity epidemic, children dress up in adult diseases by getting all the medical complications adults do, like increased cholesterol—and type 2 diabetes.”

And it should be pointed out that adults can get juvenile diabetes, just as children now get adult-onset diabetes.

No matter what name it’s known by, about 240,000 Long Islanders have diabetes and about 500,000 are pre-diabetic, according to Toni Riedel-Lehmann, associate director for the Long Island chapter of the American Diabetes Association (ADA) in Melville. Of those who have been diagnosed, 5 to 10 percent have type 1, and 90 to 95 percent have type 2. And while Riedel-Lehmann says that there is not currently specific data on how many of those are children, the nature of the diseases indicates the numbers are high.

What most people don’t understand is if both types of diabetes affect children, how different can they be?

According to Thomas A. Wilson, M.D., professor of clinical pediatrics at Stony Brook University Medical Center, they are two diseases that have similar names, but very different reasons for what causes them.

“The confusion comes from the name, and in both cases it comes from the term diabetes mellitus,” he says. “Mellitus means sugar and diabetes actually means excess urine output.”

Type 1

In simplest terms, type 1 is insulin deficiency and type 2 is insulin resistance. Dr. Wilson says that with type 1 diabetes, the pancreas no longer makes insulin, a hormone that allows us to get energy from food, because the body’s immune system has attacked and destroyed the pancreatic cells specialized to make insulin. The body needs insulin to let sugar (glucose) move from the blood into the body’s cells, where it can be used for energy or stored for later use.

Without insulin, a child’s body will store sugar in their bloodstream, which over time can damage the vessels that supply blood to the body’s organs, like the heart and kidneys, and can cause serious health problems.

Type 1 diabetics have to take their insulin through injections or an insulin pump (a portable device that delivers a steady flow of insulin into their body through a catheter), and it’s not an exact science how much insulin children in particular, with their unpredictable activity levels and hormone fluctuations, will require at all times of the day.

Type 2

It is believed that six million mostly asymptomatic Americans have diabetes type 2 and do not know it. Type 2 diabetes usually begins with insulin resistance, a condition in which muscle, liver and fat cells don’t use insulin properly, says Dr. Wilson. As a result, the body needs more insulin to help glucose enter the cells to be used for energy. The more fatty tissue a child has, the more resistant the cells become to insulin. At first, the pancreas keeps up with the added demand by producing more insulin. In time, however, the pancreas loses its ability to secrete enough insulin in response to meals.

Dr. Carey, who is also associate professor of pediatrics at Albert Einstein College of Medicine in the Bronx, says that type 2 diabetes can be treated first by weight loss and careful diet and exercise. In many cases, oral medications like Metformin and Avandia help the internal insulin work better. For some, as with Yim, the medication can affect the liver, but Dr. Wilson says most patients tolerate the medications well.

Riedel-Lehmann says that within 7 to 10 years of diagnosis, someone with type 2 will become insulin dependent.
“Once you’re diagnosed, there’s no cure at all, all you can do is manage it,” she says. “People think their blood sugar levels are great and they don’t have it anymore, but you always have it. You can’t become complacent.”

Symptoms and Diagnoses

According to the ADA guidelines, a fasting blood sugar level should be consistently under 100, and two hours after a meal, it should be under 200. A range of 100 to 126 is considered to be an impaired fasting glucose or a pre-diabetic state. Higher than 126 is diabetes.

Increased blood sugars will lead to the same symptoms for both types of diabetes: excessive thirst, frequent hunger, excessive urination, rapid, hard breathing, sudden vision changes, weakness, drowsiness or exhaustion, and sometimes a fruity odor of the breath. Type 1 diabetics can also experience a sudden weight loss, which can lead to a condition called ketoacidosis and eventually a diabetic coma.

“We see more children under five in the emergency room because parents aren’t thinking of diabetes in someone so young, and often can’t tell if they’re changing diapers more often, for instance,” says Dr. Carey. “It’s a bit easier for the older child to be able to report that he’s going to the bathroom more often or is feeling thirsty.”
The seemingly sudden onset of symptoms is common for type 1 diabetics. Shannon Jones of Port Jefferson says her daughter Kierstyn was diagnosed on Aug. 4, 2007, a month before her tenth birthday while the family was on vacation.

“She went downstairs for breakfast and a while later called up to us that she needed help. She had passed out in the bathroom, and when she came to, had crawled into the kitchen,” Jones says. “We rushed her to a local doctor who said her blood sugar was over 300. Then she passed out again in front of us. I didn’t know anything about diabetes as we sat with her in the hospital those first days. And there seemed to be no warning.”

A Better Disease?

In contrast, says Dr. Carey, kids with type 2 can go along seemingly unaffected for years. “We know pre-diabetics can have blood sugar readings of 190 for years and not be symptomatic. But the damage of that 190 is harming your blood vessels all that time.”

Is it better to have one type than the other? Dr. Carey says it would be a mistake to say type 2 is easier since a child could have had it for a while and could have complications as a result.

“Type 1 has a life-threatening component, but we’ve seen more deaths with people who didn’t know they had type 2 because they really ignored their symptoms for a while. The most likely time to die is before diagnosis,” he says. “Kids are constantly rescued from dying with diabetes. The symptoms are the same, but they come on more suddenly with type 1, and with type 2 you can get lured into complacency. People should recognize that excess urination in children and adults is diabetes until proven otherwise.”

Carey says that like type 2, type 1 is also on the rise worldwide. “We’re not sure why, but one theory is an environmental factor for type 1, which is an autoimmune disease. All diabetes is genetic to some extent. Type 2 is polygenetic; there are many different factors why someone will develop type 2. Type 1 is genetic, but only 1 in 20 type 1 diabetics have a first-degree relative (parent or sibling) who also has type 1, whereas with type 2, almost everyone has someone in the family with it.”

In other words, researchers aren’t yet clear what causes type 1, but they believe there might be environmental factors, when combined with a genetic predisposition, that can set off a chain reaction that leads to diabetes.

When it comes to type 2 diabetes, however, doctors are fairly clear that people with the disease in their families are at greater risk for developing diabetes themselves. Other risk factors include being overweight, being inactive and belonging to certain ethnic groups. While some research indicates that type 1 is more likely to affect Caucasians, groups such as African-Americans, Latinos, Native Americans and Asian Americans are at higher risk for type 2.

Yim, whose parents are from South Korea, says at 5-foot, 6.5-inches, her Body Mass Index as a teen put her in the overweight category. In addition, both her paternal and maternal grandmothers had type 2. “I had all the risk factors, but my parents and two younger siblings have not developed diabetes, so I’m not sure why me,” she says.

Both Dr. Carey and Dr. Wilson say that treating children with type 2 diabetes is a challenge because it can be difficult to get the families on board to make major lifestyle changes. Further, there’s a stigma and denial associated with having type 2 due to the obesity link. In fact, several parents of type 2 children were resistant to be interviewed for this article because of the stigma attached to their child’s disorder.

“Type 2 diabetes is the most difficult nut to crack especially when we’re addressing prevention,” says Susan Wilk, coordinator of The Diabetes Resource Coalition of Long Island at the Cornell Cooperative Extension of Suffolk in Riverhead. “If you think of it as ‘it runs in families,’ where you can visualize generation to generation passing down and holding on to old habits like overeating, not knowing how to prepare healthier meals, eating too much junk foods and fast foods, and at the same time being less active, we have a disease of the environment. On a very basic level everyone needs to understand that type 1 cannot be prevented, but type 2 can be delayed or prevented.”

The End Result

No matter what the cause or which disease, the end result is usually the same. Over time, all diabetics can develop neuropathy (nerve damage), retinopathy (damage to the eyes), nephropathy (kidney disease), heart disease, skin problems, foot complications and dental issues.

But all this scientific and medical data occurs alongside the emotional aspects and the day-to-day complications that children and families face. “And it doesn’t help that though we are bombarded with news about childhood obesity and prevention of type 2 diabetes, people are still misinformed,” says Wilk. “And someone should understand that the children are listening. For instance when you talk about preventing diabetes, what a type 1 child hears is that there was something they did wrong and that they could have prevented it, which isn’t true.”

“People just don’t know any better,” says Barbara Rogus, executive director of the Long Island Chapter of the Juvenile Diabetes Research Foundation in Melville, whose organization focuses on research for type 1 diabetes. “We get anonymous letters in response to our newsletter from people telling us that if our kids would just stop drinking soda, their diabetes would go away, which has nothing to do with type 1.”

Riedel-Lehmann says that at a recent ADA meeting, “a woman turned to me and said, ‘diabetes doesn’t kill.’ She had no idea, but her perception was that it’s just diabetes, but there are deadly consequences.”

Tom Karlya, vice president of the Diabetes Research Institute Foundation, who has an office in Medford, has been a nationally recognized advocate for causes related to juvenile diabetes since his daughter Kaitlyn’s diagnosis at age two—on Sept. 26, 1992.

“When she was in the emergency room she had IVs in both her arms, and she said, ‘Daddy, fix.’ I promised her then I would leave no stone unturned,” says Karlya. “We have to do a better job in the diabetes community of educating parents. In the early days, all parents worry what it was they did to cause their child to have it. We hear nightmare stories from across the country about how schools and communities deal with it. They don’t know how to handle it.”

Children with diabetes can face discrimination at school or day care. There have been cases of children who weren’t allowed to go on field trips unless a parent chaperoned; who were cut from a sport because the coach thought people with diabetes couldn’t be good athletes; who weren’t allowed to check their blood glucose levels in class or to eat necessary snacks; and who weren’t allowed to participate in after-school activities because no one knew how to care for diabetes.

In one of the most recent public cases of discrimination, in 2004 in Palm Beach County, Fla., 14-year-old Nikki Wagner had her insulin pump ripped from her stomach by her principal who refused to believe the girl wasn’t wearing a beeper. In addition to the trauma, the girl developed an infection in her catheter site. Her parents then sued the school district and won.

Closer to home, last summer, a complaint was filed through the Americans with Disabilities Act against the Raynor Country Day School in Speonk. Parents say the school initially refused admission to summer camp for their diabetic children. The case was settled in the U.S. Department of Justice and the school has since published an agreement on diabetes management.

Yet there is no place that a lack of information about childhood diabetes can cause more harm than in a school setting, where children spend several hours of their day, and parents have to trust that the school system is equipped to monitor their child’s health.

“In school systems, whose responsibility is the child?” says Karlya. “Should children be allowed to test [their blood level] in their classrooms or do they have to walk all the way to the nurse’s office when their blood sugar may be low? Things that seem to make sense are not always handled well, and there’s only a sporadic response from Long Island schools.”

Programs like the ones Wilk offers can educate school personnel and students about diabetes. Parents should develop a Diabetes Health Care Plan with their child’s doctor and school. Diabetic children should have a Section 504 plan or an Individualized Education Plan (IEP) that can establish accommodations, like being able to test their blood sugar in the classroom and making sure the school has someone trained on site to handle an emergency. In most cases problems can be resolved by communicating with school personnel.

The Future

Meanwhile, parents of type 1 diabetics hope for a cure. Norma Sue Kenyon, Ph.D., co-director of the Executive Research Council of the Diabetes Research Institute at the University of Miami in Hollywood, Fla., has a 16-year-old daughter, Laura, who was diagnosed Aug. 25, 1993. Dr. Kenyon is also a researcher who has been working on clinical trials to help the pancreas regenerate insulin-producing cells in the newly diagnosed. There have also been efforts toward research of transplanting islet cells from a healthy pancreas.

“But the drugs used to prevent the body from rejecting the organ causes side effects, because they suppress the immune system in a global way, so patients are more at risk for cancer and infection,” Kenyon says. “Further, there aren’t enough donor organs and you need at least two for this islet transplantation because you lose half at transplant.”

Kenyon says that researchers are confident that they’ll be able to find a cure someday. But for now, the tools to help manage diabetes are better than they used to be, with shorter, less painful insulin needles and glucose meters that don’t require children to prick their fingertips to get blood samples. And Dr. Carey says researchers are working on a “smart pump” which can both read a child’s blood sugar and automatically deliver the right amount of insulin, essentially a battery-operated pancreas.

In the end, sometimes it comes down to the psycho-social acceptance that is the challenge for parents and children, says Carey, adding, “everyone needs emotional support.”

Says Dr. Kenyon: “On a personal level, to me the hardest part is the psychological part. When your child is diagnosed, no one tells you about the impact on the family, but it affects your other children. The science part I deal with every day. But the part where you wonder all the time, why her? Why my child? At times you’re so overwhelmed. If someone had told me that when she was in a diabetic coma and all we could think about was getting her well enough to come home, maybe I would have been prepared. And then you have to deal with all the misinterpretations of people telling you, ‘Don’t worry she’ll grow out of it.’ No one understands what they can’t see, because you can’t look at a child and know they have diabetes. But they have to be aware of their disease all the time.”

College senior Yim agrees: “I always have to watch out for what most people don’t give a second thought to. I’m not sure people would understand even if you explained it to them. Dealing with a chronic disorder means you have to deal with this for the rest of your life, and in so many unexpected ways. Since I was in seventh grade I wanted to join the Peace Corps. But I learned they won’t take me because if you have complications from diabetes, you aren’t allowed to join. That reason seems so unfair. At the same time, it’s one of the reasons I want to go into public health and maybe medical school after that.”

Dr. Wilson says that the public has to accept the fact that type 2 is preventable. “If we can just readjust our lives this epidemic of type 2 would go away. But because of the treatments we have, all diabetics can do very well, and can live long, healthy lives without complications. Childhood diabetes is a serious condition, but it is manageable.”

Liza Burby is the former editor of Parents & Children magazine and the current publisher/editor of Long Island Parent.

Resources

Diabetes Resource Coalition of Long Island in Riverhead
631-727-7850, Ext. 385
www.longislanddiabetes.org

Juvenile Diabetes Group
Sid Jacobsen JCC
516-484-1545 ext. 148
sdenison@sjjcc.org; www.sjjcc.org

Long Island Chapter of the Juvenile Diabetes Research Foundation in Melville
631-414-1126
www.jdrf.org; www.jdrf.org/longisland

Long Island Chapter of the American Diabetes Association in Melville
631-348-0422
888-DIABETES
www.diabetes.org

Pediatric Diabetes Education Center, Schneider Children’s Hospital in New Hyde Park
718-470-3290
www.northshorelij.com
www.schneiderchildrenshospital.org

Stony Brook University Medical Center Department of Pediatrics
631-444-KIDS
www.stonybrookmedicalcenter.org/pediatrics

The Good Samaritan Hospital Children’s Diabetes Support Group in West Islip
631-376-4049
www.longislanddiabetes.org/support.htm

Winthrop-University Hospital in Mineola
516-663-2350
www.winthrop.org

School Advocacy
(for assistance with 504s and IEPs)
Doreen Cordova/Cordova & Associates
516-481-0624
dcordova@CordovaLawAssociates.com

Attorney Doreen Cordova advocates for parents trying to obtain school services for their children who require them.

Part 18 of Our Award-Winning Series “Our Children’s Health”

For many families with children who have special needs, that might just be the agenda.

On Long Island, it is estimated that between 11 and 14 percent of students are in the special education system; add to that the large number of children who have unaddressed disabilities or problems that are not addressed properly by the district. In some cases, parents will be able to obtain all the services they need, and they will be able to work cooperatively with their school district’s special education department. In other cases, parents will find themselves in an adversarial position with their district, and they will need help.

Rita Lenz, of North Bellmore, experienced both sides of advocacy. Her son Michael is autistic and was classified as such in kindergarten. Lenz had positive interaction with the North Bellmore Union Free School District, where Michael attended school in his early years. For Lenz, it was a cooperative relationship. Her son was part of an inaugural program for autistic children. But when it was time for Michael to attend middle school, in the Bellmore-Merrick Central High School District, where 10.4 percent—the low average—of the students are classified as special ed, everything changed.

“They were not equipped to service Michael correctly,” Lenz explains.”They just didn’t have a proper placement for him.” As is happening with many autistic children, transitioning is problematic.

Lenz says she found it “difficult to get communication lines open with the district.” Realizing the battle would be emotionally draining and time-consuming, she hired a lawyer who specializes in fighting for the rights of children with special needs—Doreen Cordova.

When Cordova takes on a case, as gentle as her demeanor seems, she will not take “no” for an answer. “I try not to be adversarial,” she explains.”I just want [the districts] to do the right thing for these students.”

And that’s just what she did for Michael Lenz, who is now 12. He now has the services an autistic child his age needs.

“They didn’t realize the transitional needs Michael had,” says his mother. “As a parent it was very, very hard to get that across to them without Doreen’s help.”

While Michael was classified with a disability since kindergarten, 15-year-old James’ battle didn’t really begin until much later—in high school. According to James’ mother, Linda Burns (their names have been changed in this article), their district, the Hicksville Union Free School District—where 12.6 percent of students are classified for special ed—refused to classify him for services and only allowed modifications under the 504 plan, which provides accommodations to students with special needs who are not classified as special education students. Burns says that she knew that her son, who has central auditory processing disorder, required “deep” services such as speech and language rehabilitation, and so began her heated fight with the district. (The director of special education for HUFSD was on vacation when called by the Press and was unavailable for comment.)

“I went to meeting after meeting, getting so frustrated,” Burns recalls. “Finally they gave me a flat-out ‘no!’ so I hired Doreen Cordova, who not only turned out to be incredibly effective and well-informed, she was so humane. She fought this through her knowledge and her heart. She cares about these kids. And once Doreen had them provide the proper testing we needed, and the results showed he needed help, the services [James] required came.”

Cordova is one of a few lawyers on Long Island specializing in school advocacy, and through her South Hempstead private practice, Cordova & Associates, she provides special education legal services Islandwide.

Cordova is wholly devoted to the cause. She doesn’t charge those who can’t afford her services; she has a sliding-scale fee to accommodate clients’ needs; she  works seven days, “all day long”; and most importantly, clients have her “for the long run.” The school district might want to give up on a child, she says, but she won’t.

“These parents have to have an attorney,” she warns. “They cannot do it on their own.

“Parents, for the most part, are not knowledgeable in educational law. They have enough to be concerned about. They can’t look at an evaluation and say it is fine. They need someone who knows the law.”

Cordova’s large desk is full of files. All represent the quality-of-educational-life cases she’s currently handling, many pro bono. (In those court cases where parents prevail against their school distrct, legal fees are reimbursed by the district.)

The adjoining room is filled with colorful toys for children to play with, while their often distraught, on-the-edge parents are pouring their hearts out to Cordova, who is often the first sympathetic ear the parents have come across. The soft-spoken Cordova says she has prevailed in about 95 percent of her cases, in an amicable fashion. It’s easy to believe.

Unlike some lawyers who will only take on court cases, or some lay advocates, who will only advise a parent prior to a committee on special education (CSE) meeting at the school, Cordova does it all. She attends CSE meetings in an attempt to head off future litigation. She has a simple credo when it comes to dealing with the many school districts she works with: “They know I’m not there for the fight. I’m there for the well-being of the child.”

But if it’s a fight they want, she’ll give it to them. And so will Andrew Cuddy, an attorney in upstate Auburn, N.Y., who specializes in cases regarding special education. Cuddy, the author of The Special Education Battlefield, takes on mostly the court cases. He, like Cordova, emphasizes that these are not luxuries parents expect their child to receive—these are required federal and state services for what the federal government calls an “appropriate education.”

“Parents are most vulnerable when dealing with special education issues with their districts,” Cuddy explains. “Districts withhold information and misrepresent a child’s rights and needs. Districts have their own [budgetary] best interests in mind.” Cordova agrees: “They’re afraid it will open the floodgates if they give a child services. But providing these services is [legally] not supposed to be a budgetary concern. ”

Cuddy says, “It’s a very good idea to at least have an advocate”—usually a parent advocate, a lay person trained to deal with the special education system, or a lawyer. “Parents are the best advocates,” he says, “but they are too intertwined with all their emotions. Districts take on techniques at a meeting to set off those emotions to force parents to reel back and stop advocating.”

One parent who didn’t stop advocating is Fran Quinn of Plainedge, whose son, Nolan, 15 needs services and is an honor student. He began with 504 modifications and now has a full Individualized Education Plan (IEP), part of the special ed program.

“Some people ask me why my son needs services if he’s getting such high grades,” Quinn says. “I explain that he gets those high grades because of the services he receives.” Quinn has never had a need for an outside advocate.

“I learned everything I could,” she explains, “and I am very secure when I attend the meetings even though they can be very distracting, very scary and intimidating. It’s one person against 12. But from day one, you need to be on top of things.” Quinn does admit that it’s easy for a parent to get all riled up or “all weepy” at a CSE meeting and lose focus.

For even the most well-prepared person, such as Quinn, a CSE meeting can be a dizzying affair, with papers shifting, specialists jabbering and your child’s future on the line. “It’s easy for parents to go blank,” says Cuddy.

“That’s exactly why you need a lawyer,” says Lenz, the parent of the autistic son who was not receiving services he required.

“By having an advocate there,” says Cuddy, “the parent isn’t so personally involved. They can hear and respond, and their emotions don’t interfere with their thought process.”

Why does it have to go this far? Cordova and Cuddy both say it is a combination of reasons: budgets, not fully understanding a child’s disability, poor testing by the school district, and one that is even worse, according to Cordova: “Schools allow failure.

“It’s unacceptable,” she adds.

Recently, there was a slight glitch in James Burns’ services. His mother contacted the school and she says they once again gave her a hard time.

“Do you want me to bring the lawyer back?” she says she asked.

Linda Burns’ request was honored the following day.

RESOURCES

Doreen Cordova, Esq.
Cordova & Associates, P.C.
516-481-0624
dcordova@cordovalawassociates.com

Andrew K. Cuddy, Esq.
716-868-9103
716-569-6466
akcuddy132@aim.com

VESID’s Long Island Parent Center
887 Kellum St., Lindenhurst
631-603-3300

New York State Education Department
www.nysed.gov

Advocates for Children of New York
www.advocatesforchildren.org

NYS Parent Network
www.nysparentnetwork.org

Oops

By Pia Savage

The plane was late. The terminal was wall-to-wall people, and the ladies room could be charitably described as gross. For some reason, probably to remain sane, I began singing “I fought the law and the law won” over and over again as loudly as I could. Fortunately, I was singing this in my head, for had I been singing out loud, the law probably would have carted me away. I hear music perfectly in my head, but am totally tone deaf.

When I was a child, a piano teacher came to our house to give my sister and me our first lesson. She couldn’t say enough great things about my sister.

“But her,” she said, about me. “How can you even think of giving her lessons? She’s retarded.”

My parents tried to stop the piano teacher from talking, but I never forgot what she said. My father, who thought I could be perfect if I only tried harder, asked me to practice so I could “show” the teacher. My mother told him to drop it. He realized how sad I was and turned it into a joke. We all knew my father had taken piano lessons for seven years and could play one song, “The Anniversary Waltz,” which he played often and not always appropriately. He played it that day, and I laughed, but my heart was broken. I had already been kicked out of ballet lessons. I had already been kicked out of softball. I still, to this day, wish I could sing, dance and play an instrument or a sport.

My first week at college, I was asked to join a band as I had the chick rock-star look down perfectly.

“I can’t sing,” I said.

“You can play the tambourine.”

“I have no sense of rhythm.”

“You can just stand there and pretend.”

I couldn’t even do that—or wouldn’t, of course. My confidence level was somewhere below a minus-10. If the police came and asked somebody to confess to having begun World War II, I would have confessed. That I hadn’t been born then was but a minor detail. I was guilty of everything.

There was so much that I couldn’t do. I couldn’t learn another language, nor spell, and my handwriting was illegible. I couldn’t learn math past percentages. I was probably only good at arithmetic because my father was a CPA who would drill me every night. Then again, he would drill me in spelling words, and it’s only been in the past few years that I have been at a computer constantly, that anything about spelling has begun to make sense. I never learned the rules of grammar, and still have to think to remember what an “adjective,” “noun” or any other part of speech is.

Yet I’m able to use words in ways that few people can. My writing ability is purely instinctive. I was one of the most-read personal bloggers for over two years. Trust me, I had no idea what I was doing. My blog didn’t have a master plan. I didn’t have a theme. My posts were long. Were I to begin blogging now that there are “rules,” I wouldn’t even attempt to begin a blog.

I have many deficits and yet I’m smart. My IQ has been tested as well above average. I confuse people constantly.

I have nonverbal learning disorder, or NLD. That means I spend too much time being angry because inside me is a very smart person who can’t tie her shoelaces properly and only recently has begun to learn order in every sense.

NLD is diagnosed in children who may show very impressive verbal, reading, spelling and rote memory skills, but very weak motor, social, sensory, and visual-spatial abilities. NLD is a neurological disorder overlapping with and possibly occupying the same end of the autism spectrum as Asperger’s syndrome. It originates in the brain’s right hemisphere. This is the part of the brain that deals with performance-based information, and according to the Nonverbal Learning Disorder Association, when there is a deficit, it is in “visual-spatial, intuitive, organizational, evaluative, and holistic processing functions.” If you saw me in person, you would know why it is also known as the “clumsy child syndrome.”

I couldn’t clean my room when I was a kid, and I couldn’t clean my apartment properly as an adult. I was sloppy. I use the past tense now because I learned to fake it. Maybe everybody fakes their way through life. I wouldn’t know. I’m too busy trying to right myself.

I had many secrets as a child. I didn’t want to hurt my parents so I didn’t tell them that kids would tease me beginning around age 9 because I couldn’t run, catch or throw a ball, or do any of the things necessary for social success. My parents would tell me to try harder. My father devised exercises that didn’t help. My parents tried so hard; I felt so bad for them.

I had my first fight with a therapist when I was 9. What was I doing in therapy? Nine-year-olds aren’t supposed to be in therapy, but in many ways I was never a typical child. I could sense that I was different. My parents watched me try so hard and their hearts broke. I went for tests at NYU. I only remember being given an IQ test, verbally. The tester yelled at me because I did so well but didn’t know what “Genesis” was. I was 10 years old and my family wasn’t religious. How was I supposed to know it was the first book in the Bible? When the test was over I ran to my parents and told them they were failures as parents because the woman said everybody was supposed to know that. Looking back, I’m a bit shocked my parents didn’t become religious fundamentalists in the hope that it would help me. I found out later that particular IQ test was supposed to be given to adults, not fifth-grade girls, and I still did incredibly well. There were many other tests. The results were inconclusive. They thought I might have had, I found out later, a touch of cerebral palsy.

I am awkward and uncoordinated and when under stress it gets worse. As a child I did not have the grace of other young girls, nor the fluidity of movement, speech and thought. My years as a child in Queens and adolescent in the Jericho school system were nightmarish. I would constantly be berated by teachers for sloppy notebooks and illegible handwriting—singled out and humiliated in front of the classroom. I was a space case, they’d say, and I was called “stupid” by teachers in front of my classmates. Classmates, keep in mind, who already thought I was a physical mess—clumsy and uncoordinated.

My first panic attack was on notebook inspection day in second grade.  As my last name begins with an “S” I had much time to wait and imagine the consequences.  Mrs. Schrieber was thrilled with most kids’ notebooks. We were 2-1, the smart class.  I’m sure she had bad things to say about a few people. But nothing compared to what happened when I walked up to her desk and she took my notebook. Silence. Dead silence. Then she screamed. She had never seen a notebook that was as bad as mine.  She held it out for the class to see. None of my notes were in order. My handwriting was illegible.

I was 7 and my hands were shaking. I couldn’t catch my breath. The room spun.  I thought I was going to faint and almost wanted to. When she spoke to me and demanded answers about the notebook’s condition I couldn’t answer even had I a ready answer. I didn’t know why it was so bad. If I could have have made it better I would have. My parents made one of their frequent trips to school. They could only supervise my homework; they couldn’t be in class with me. My parents didn’t want school to be my whole life.

I tested exceptionally well on standardized tests. As long as they played a role I couldn’t fail. That made both my second and fourth grade teachers crazy.  My fourth grade teacher, Mrs. Sutter, told me in front of the whole class that I didn’t deserve to be in a “1” class.  She said I was “a sloppy, lazy girl” who didn’t think like the other girls. I was developing early and wasn’t proud of that. She pointed my pubescent body out to the other kids, remarking about my breasts. She would not have felt entitled to treat me this way had I been a student she respected. Somehow that got back to my mother, who seemed more upset about my new bad body image than my being taken out of a “1” class.

Outside of school I had neighborhood friends who I knew didn’t really “get” me or like me. Non-competitive sports calmed me and on my own I’d roller skate and ice skate (badly) because I enjoyed going round and round the rink. My parents insisted that I spend at least as much time doing these types of activities as I would doing homework. My mother got me an adult library card in second grade and I would take out the maximum amount of five books each week. Friends and family couldn’t believe that I could read so fast and comprehend the material. Even kids were constantly testing me to make sure I understood.

It was never easy. I was the girl who had to give an oral report in eighth grade and no words came from my mouth. My teacher found that very funny.

My fellow students said they didn’t want to be president of our homeroom. So that same teacher insisted that I be president. Everybody laughed. My teacher scored points with the popular kids and got rid of that pesky job. She told me I had no choice. I have never forgotten that feeling so similar to being sent to the corner of the room in the dunce cap.

When I reached junior high I failed typing and almost failed everything else. My typing teacher would yell because I have a light touch and couldn’t get the letters to come out. Since I couldn’t memorize the keyboard that really didn’t matter. This upset my father, who would help me practice on his typewriter every night. In our house typing wasn’t a “girl” thing, but a necessary skill in life. Once again I thought I was disappointing my father, who didn’t even really care that I wasn’t a good student. He just wanted me to speak up for myself, be neat, have hair that didn’t fall into my face, and now type.

In junior high, every morning, as we waited for the bus I, the odd girl out, would be pushed into the shrubs. The bus driver would see this as he drove up. Not his problem. It was acceptable to treat me as if I were trash, and one thing I realized early in life; kids imitate adults. These weren’t bad kids. I’m friendly with some now. If the teachers thought I was trash it was acceptable for kids to treat me that way.

School is torture for an undiagnosed NLD child. You never really grow used to being yelled at. It wasn’t as if I were a bad girl. I never cut classes. I didn’t hang out in the bathroom. I didn’t even have anybody to eat lunch with. But there were very brief moments of triumph as well. A ninth grade art teacher loved my primitive paintings and even entered them in an art fair, but he left the school system. My tenth grade biology teacher saw that I understood the material but couldn’t answer standard four choice tests. He gave me special essay tests. And I did well.

It was better in high school. I lost 35 pounds sophomore year and teachers don’t make fun of pretty girls. But until then it was open season. I often overheard kids saying that I had wonderful parents who had a great decorated house and how could I be their daughter? I was the girl who constantly spilled things on my clothes.

Recalling these stories, I’m shaking as I type this.

It wasn’t until college, at C.W. Post, that I began to become the person I was supposed to be. True, it took me three colleges and eight years on and off to graduate, but there was this thing about me that attracted people when I wasn’t repelling others. I felt half-a-beat off, but I made friends. But when you’re out of the hell of high school, in the real world at college, the types of idiosyncrasies I had were more accepted. I was now quirky, interesting.

There was a psychologist at college whose clients included a large portion of my friends, and he would discuss me with all of them. Even at 18 I intuitively knew it was wrong for a doctor to discuss somebody with so many people. Then I wondered why I was discussed so much.

I understood why at college my resident assistant and my roommate conspired to take away my cigarettes and have them analyzed for drugs, because of my odd behaviors—a very illegal search that had fortunate consequences for me, by the way. I was given my own room in the basement of the dorm (and a curfew). I could, however, go in and out of my window at will. The thought of me jumping up into a window and jumping down to the ground makes me laugh, as I’m the least coordinated person I know. But I had a full social life that didn’t include sitting around the dorm.

I didn’t tell my parents about the cigarette incident for a long, long time. But I did tell them that I had been kicked out of Driver’s Ed in high school because I couldn’t learn the “10-2” position. The teacher told everybody that I came to school stoned. I think I had at that point been stoned twice in my life and never in school and certainly never in Driver’s Ed. But, hey, call a 17-year-old girl a stoner and you might just be creating one.

My mind was a roadmap I couldn’t follow (I can’t understand directions anyway). and I was unable to understand anything when it applied to me. I would hang in clubs in Greenwich Village and always joked that a man would practically have to hit me in the head to get me to notice him. So I moved in with the one who accidentally did hit me in the head.

Another joke of mine was that I had been born divorced from everything. When I was 20, I dropped out of college, traveled in Europe with people I met on the plane who dropped me soon after, because frankly I was weird. I went to Israel to work on a kibbutz, from which I was eventually kicked out. I couldn’t keep my area clean. There was a boy at home, and we married. The marriage couldn’t have worked had we worked at it. We were too young and I had problems nobody could give a name to.

I moved in with friends from college who neglected to tell me they had turned into junkies. And they could have been carrying signs and I wouldn’t have noticed. I was going to school in Manhattan, employed, doing volunteer work, and just wasn’t aware. That’s part of it: I am oblivious to the obvious. I went to Cambridge, Mass., to visit my sister for a weekend and didn’t come back to New York. I made friends there, took a job at an exclusive boutique and enrolled for grad courses at Boston University. It was the first time school made sense. I hadn’t realized until then that I learn conceptually. I’m not a rote learner. I’m not a deductive thinker, but an inductive one. I easily see patterns. Remember, I look beyond the obvious; as the obvious doesn’t exist for me. The higher up the school chain I go, the better I do.

I returned to New York and began what was supposed to be a six-week temp job coding documents for a large corporate divestment case that somehow turned into a 13-year career, on and off. I managed a complex project where the client consisted of a consortium of seven law firms. I excelled at hiring, training and motivating, and had learned to delegate years earlier so that others could do the work I was unable to do. But this particular project was so difficult because of my lack of organizational skills that I threw up every morning on the walk to work.

I laid myself off and proceeded to lose weight. I couldn’t stop walking. In my distinctive awkward gait, I must have walked every block in Manhattan a few times. I thought I was losing my mind. I found a well-known psychiatrist who sent me to a pharmapsychiatrist who sent me to a testing psychologist. I was his first adult patient and could only fit into the children’s seats since I was so thin at that point. He would give me a test and come back two minutes later saying, “You really can’t do this, can you?” According to him I was so learning disabled that he couldn’t understand how I could function in the real world. But if I was willing, he might be able to help me. I looked at the child-sized desks. My adult-sized ego had taken a beating it never really would get over. He was telling me everything I couldn’t do, but nothing that I could do.

The fraud I had always thought I was wasn’t in my imagination. There was something more, something nobody was able to name: NLD.

I held several jobs, but I had things to prove so I went to grad school for social work. I quickly figured out that they had made a bogus language to explain simple concepts. Here, I excelled. I studied constantly. Remember how I felt guilty about everything, feeling like a fraud about all aspects of my life? When I received my undergraduate degree, I kept feeling as if my father must have bought it—of course, I could not have earned that on my own—though I knew he didn’t. What happened was that I had learned to study. When my father, who thought I was brilliant despite what the world was telling him, died, I was on a mission to prove to a dead father that I was smart. This made no sense even to me, and I should have talked about it to my newest therapist, but I couldn’t put it into words. Everything I did was to prove myself. I had to show the tester that I wasn’t as stupid as he thought. I passed the then-certification now-licensing exam for the CSW in 45 minutes in my last semester. I learned how to help a lot of different types of people, but still, there was no help for me.

I was still seeing the pharmapsychiatrist since I had become addicted to Klonopin. I was depressed for the first time in my life. You see, I had always been too anxious to be depressed. There seemed to be so little help for me

Grad school was supposed to be a rigorous intellectual exercise, but with NLD, seventh grade was actually much more difficult. That’s a good thing for all of the parents out there who are worried about their NLD child’s future. There is hope. And more so nowadays, when NLD is diagnosed earlier, or even diagnosed at all for that matter.

Something was very wrong and nobody could help me. Asperger’s syndrome, a high-functioning form of autism that is often manifested similarly to NLD, had become a popular diagnosis while I was in school, and I was given a very half-hearted unofficial diagnosis. Asperger’s is that disorder where those with the syndrome are awkward both socially and physically, often very smart and somewhat offbeat. My diagnosis was given half-heartedly and not “officially” because I was too social. (The Asperger’s diagnosis is evolving, and being social no longer prevents a child from getting the diagnosis.) I couldn’t have lived that Asperger’s life as though I had it. The physical symptoms fit; nothing else did at the time.

I was doing everything possible to find out what was wrong and all I was getting were more questions. I hated being fixated on problems. I went on, because despite it all I loved my crazy life.

People talk about the shock of recognition when they find out their problem has a name. Asperger’s didn’t do it for me. And for good reason. It was wrong. I began to be very resentful of all the publicity it was getting. It felt as if it became a catch-all.

When I was finally diagnosed with NLD with the subset developmental coordination disorder (dyspraxia, also known as the “clumsy child syndrome”), by a specialist in the field, I felt that shock of recognition. I wished that my parents were here to understand that I had true problems. Learning about it changed my life. For the first time I took total control.

I’ve been a Manhattanite for a while, and I recently realized it had been the wrong place for me to be living in. My best friend spent days pointing out that people bump into me more than I bump into them. I can’t measure space properly so I overcompensate. I’m always the one to say “sorry.” And I had already said “sorry” to everyone I could in my hometown of Jericho.

I’m now living in South Carolina, because New York has too much stimuli for me. I spend a lot of time chilling out and trying to get back into shape. I want a great social life. I cheated myself out of so much in the past. Basically I gave up men after the learning disability tests and haven’t found anything to replace them with. I denied myself having children because I was so damaged. As harsh as this sounds, I would love to kill the doctor who told me I shouldn’t be functional, but I can’t remember his name. If I give up on living, if I stop improving myself, I let him win. And I can never do that.

So I’ll continue to sing on-key in my head, but now I’ll also sing out loud as well, off-key and with pride.

Pia Savage is one of the Internet’s most popular bloggers. You can check out her blog at www.CourtingDestiny.com.

What You Need To Know About Nonverbal Learning Disorder

One of the most misdiagnosed of all disorders, nonverbal learning disorder (NLD) is a neuropsychological condition that originates in the brain’s right hemisphere. The condition often goes undiagnosed because the child is usually eloquent, retains auditory material and can read at a younger than “normal” age. As with any disorder, a child can have any or all of the symptoms, at different levels of impairment.

NLD, with an already high official prevalence rate of 6 percent, is believed by many experts to be much more common than that since it is so often misdiagnosed or not diagnosed at all.

The NLD child will lack coordination, fine and gross motor skills and have balance problems. Though the child retains auditory material, he or she doesn’t retain images, and has faulty visual recall. The child’s sense of spatial relations is severely impaired. Spatial relations are key to understanding the world, for example, the distance between two people. A child might stand too close or too far, in an intuitive attempt to make up for this spatial deficit. People think that these children aren’t paying attention to their surroundings, when, in fact, the child is paying too much attention subconsciously. The NLD child might accidentally touch another person in a way the person might think the child is actually hitting him or her.

The child will have difficulty with executive function. According to www.nldline.com, this includes decision making, planning, initiative, assigning priority, sequencing, motor control, emotional regulation, inhibition, problem solving, planning, impulse control, establishing goals, monitoring results of action, and self-correcting. Again, the child might have all or few of these problems and in differing levels of severity. In my experience, this is especially true in motor skill, organization and spatial relations areas.

The NLD child has problems with comprehending nonverbal communication, has difficulty adjusting to new situations and transitions and has deficits in both social situations and social judgment.

Kinesthetic processing is the ability to detect sensory stimuli such as body position, weight, or movement of the muscles, tendons and joints. Children with NLD lack this vital ability to master the physical world around them. Since the child can’t rely upon kinesthetic processing or spatial relations, he or she is unable to generalize information and little is learned from experience or repetition. Again, there are degrees of severity and a child’s innate intelligence may compensate.

There can be problems in visual, auditory, tactile and/or olfactory sensory abilities.

And there’s more: When you’re not in sync with the world around you, stress, anxiety, panic and phobias develop, and are often the by-products.

As a guideline, check out the assessment scale devised by clinical psychologist David B. Goldstein, Ph.D., at www.nldontheweb.org/Goldstein_1.htm, a scale that parents can fill out. NLD diagnosis is made more difficult because the child often has other problems, or problems that mimic NLD, such as Asperger’s, a high functioning form of autism. A child with NLD may appear to suffer from attention deficit/hyperactivity disorder (ADHD) or an assortment of physical, developmental or mental disorders. With an NLD child, cognitive testing shows a significant difference between verbal and performance scores. The verbal score will often be very superior.

A good prognosis for the NLD child depends on early identification and intervention. As each child is different, the treatment plan will differ, but it should be holistic and encompass every area of the child’s life, including every staff member who comes into contact with the child at school. An Individualized Educational Program (IEP) should reflect the child’s needs: The child’s assignments should be modified daily and treatment constantly revised. As much visual stimulation as possible should be taken out of the classroom setting and enough room should be added on tests to account for poor handwriting. With proper identification and treatment, the child should be able to live a “normal” life.

For more information visit www.nldline.com and www.asdfocus.com/factnld.htm

This Swedish ad accurately depicts the skewed self-view of many people with eating disorders

Part 16 of Our Award-Winning Series “Our Children’s Health”

If you walked in on your teenage daughter and caught her looking at pictures on her computer of Nicole Richie or Mary-Kate Olsen, would you think anything of it? Or would you assume she was checking the latest gossip? What if the faces on those frail bodies were not famous; would that make you look twice?

Liza Fascia of Monmouth County, N.J., wasn’t worried at first. She thought her then-14-year-old daughter Ashleigh was browsing the latest fashions. Every time she peered over her daughter’s shoulder, Ashleigh seemed to be looking at celebrities, models and clothing. Taking her daughter’s super-girlie obsession with runway models and the newest clothes at face value, Fascia assumed that Ashleigh was like other teens, until she took a closer look. Fascia’s own home computer was acting up one August afternoon, and she needed to do research immediately for her job as a freelance writer. She borrowed her daughter’s laptop and discovered a computer memory trail that horrified her.

“First there were just pictures of really skinny models. Then I found pictures of girls that looked dead. I mean, literally, skin and bones, and nothing else—no muscles, it was like they had flaps of skin.” But nothing could have prepared Fascia for the bookmarked sites on the computer. Fascia found that Ashleigh had been visiting pro-ana websites. Pro-ana (pro-anorexia) sites are support groups that promote anorexia nervosa—you read correctly, these sites PROMOTE anorexia—as a lifestyle choice as opposed to an eating disorder. And the content of the sites is more than disturbing.

“My heart dropped when I saw some of the things that these sites said,” says Fascia. Ashleigh’s mother saw sayings meant to encourage and support girls who wanted to be anorexic, sayings like: “When you get hunger pains, curl up in a ball. It really helps them go away.”

In horror, Fascia read on, through the “Reasons Not to Eat”section:

1. You will be FAT if you eat today. Just put it off one more day, hour, minute and second.

2. Bones are clean and pure. Fat is dirty and hangs on your bones like a parasite.

3. When you start to get dizzy and weak you’re almost there.

4. People will remember you as the beautiful thin one, not the ugly fat one.

The closer Fascia looked at her daughter, the more she saw.

“I felt like a shade had been lifted and I could finally see out the window, and what I thought was green grass all along was really a brick wall,” says Fascia.“My daughter had an eating disorder and I had no idea. And the worst part was that these monsters were helping her.” Fascia realized that her teenage daughter was anorexic.

ANOREXIA: WHAT IS IT?

Anorexia nervosa is a psychological eating disorder that causes sufferers to have a distorted body image. Often, they see themselves as overweight, even when they’re dangerously thin, according to the American Psychological Association. Anorexics frequently refuse to eat; they exercise compulsively and develop unusual habits such as refusing to eat in front of others. They lose large amounts of weight and may starve to death.

Other common eating disorders include bulimia nervosa, in which sufferers eat excessive quantities of food, then purge themselves of food and calories with laxatives, enemas or diuretics, or by vomiting and/or exercising. Often acting in secrecy, bulimics feel disgusted and ashamed while bingeing, yet relieved of tension and negative emotions once their stomachs are empty.

As with people who have bulimia, those who have binge eating disorders experience frequent episodes of out-of-control eating. The difference is that binge eaters don’t purge their bodies of excess calories.

THE MIND OF A MONSTER

Fascia asked herself how her daughter got to this point. She also wondered what kind of person could run a pro-ana website. Often, these sites’ webmasters suffer from eating disorders—like Patty,* a recovered anorexic/bulimic who used to co-run a pro-ana site.

“It’s very lonely, having an eating disorder,” says Patty. “You start to isolate yourself from everyone except other people who have an eating disorder—they understand. That’s why you would join a [pro-ana community]. Nobody is going to tell you to just go eat a sandwich.” Patty, who makes sure to distinguish that not everyone with an eating disorder hates themselves or their bodies—as therapists have told her—says that in her life, her family puts a lot of emphasis on perfection, and restrictive eating was her outlet.

“When you can’t scream on the outside, you scream on the inside,” she says. “That’s anorexia.” The now-27-year-old student was once hospitalized after eating nothing for 10 days.

Patty explains that there are different types of pro-ana/pro-mia (short for bulimia) sites. Some, like the one she used to run, would ban the disconcerting photos of sickly, skinny girls, often referred to as “thinspiration,” or “thinspo,” like the ones Fascia found on her daughter’s computer. Patty’s site, RubysGloomyPlace, was taken off the server, she says, and now runs under a different name—which is kept secret. “Sites are very protective of who they let in because they get shut down all the time,” says Patty, explaining that some visitors are seeking a quick fix, a way to lose 10 pounds in two days, or to fit into a bathing suit or a prom dress. True anorexics resent those “posers,” and don’t welcome them into the community, she adds.

So, who’s to say who is a true anorexic and who is a weight watcher or health-conscious gym goer? This ambiguity makes anorexia difficult to diagnose and deal with.

The symptoms, however, are clear: They are the same as starvation symptoms.

“There’s a continuum that goes from normal eating to eating disorders, and somewhere in the middle there’s something called disordered eating,” says Judith Ruskay Rabinor, Ph.D., director of the American Eating Disorders Center in Lido Beach. So, for those Patty refers to as each “poser who fakes an eating disorder for attention,” there are anorexics who are flying under the radar. According to the National Eating Disorder Association (NEDA), 35 percent of “normal dieters” progress to pathological dieting. Of those, 20 to 25 percent progress to partial or full-syndrome eating disorders. Even those who fall in the normal weight range can have an eating disorder, says Rabinor.

Some may wonder what a story about an adult with an eating disorder has to do with the subjects of Our Children’s Brains. These eating disorders are rarely developed later in life. According to the National Institute of Mental Health, adolescent and young women account for 90 percent of cases. In fact, according to Rabinor, many of her patients consider their eating disorder a “family disorder that starts in our heads.”

“Usually an eating disorder will have its origin in some kind of family dynamic and is triggered by emotional problems; generally, somebody learns how to deal with a problem by using or misusing food. Kids become adults who learn how to fill a hole in their soul with food,” says Rabinor, the author of A Starving Madness: Tales of Hunger, Hope and Healing in Psychotherapy.

LET’S HEAR IT FOR THE BOYS

Jacob* has always been health conscious: He played sports in high school, had a two-year tryst with vegetarianism, and lifts weights and exercises regularly. To the average observer, his obsession with what he calls a “healthy” weight is normal, even beneficial. When other men his age began to get that signature mid-30s spare tire, Jacob was perfecting his six-pack abs. Planning a night of drinking and eating with friends, though, sends the 33-year-old into a tailspin of calculating the calories in light beer and the fried chicken he might eat. Jacob has learned tricks to make it appear as if he’s been eating all night, to not attract any unwanted attention. “I keep a full plate at all times—everyone assumes that I keep filling it up. Every once in a while I take a forkful of salad. For the most part, nobody even questions me,” he says. But those close to him know full well that he is obsessively watching what he eats. And even Jacob admits that he falls into the 10 percent of men and boys who have an eating disorder.

Anorexia makes headlines often: starving female models; after-school-special-type stories of high school girls’ bingeing and purging; even moms trying to lose baby weight. But rarely do we hear about boys and men like Jacob, who stands 5-feet-6-inches and weighs just under 120 pounds—a number he finds appallingly high.

“I am constantly counting calories,” says Jacob, an Internet marketer who works gruelingly long hours in Manhattan, and subsists on only coffee and water all day. “When I don’t eat anything all day, it makes me feel happy—I love when I can drink a bottle of water and feel the liquid making its way down my stomach—then I know I have nothing in my stomach.”

Dealing with a male who has anorexia can be difficult, says parenting expert and author Ann Pleshette Murphy.

“Boys are often afraid to ask for help because they think eating disorders are a girl thing,” says Murphy, former Parents magazine editor in chief, who adds that boys who suffer from eating disorders often have low self-esteem—both a symptom and cause of the disorder.

These words resonate with Jacob. His ongoing weight battle revolves largely around his overall appearance and self-worth. “I have low self-esteem,” he admits (the ruggedly attractive, self-diagnosed anorexic also admits he has never sought help for his issues). “I worry about what strangers think about me, or when I’m walking in the mall, I wonder why girls aren’t checking me out. It all adds to it.”

Experts like Rabinor agree.

“You have to examine the behaviors associated with your eating: Are you changing your life around in order to maintain certain weight or diet? How much of your life is devoted to thinking about weight and what you’re eating, or not eating? There’s isn’t one clear criteria. Ask yourself the ABCs of eating disorder; that’s a quick check,” says Rabinor.

The ABCs, she says, are “Affect”: What are your feelings about food? Does the thought of eating give you anxiety? Can you actually enjoy a meal?; “Behavior”: Are you exercising nonstop? Do you purge or vomit after eating? What are your eating patterns?; “Cognition”: How much time do you spend thinking about food and your weight?

“Even if you are a ‘normal’ weight—if you are consumed with thoughts about food, eating it or avoiding it, you could still have a disorder,” says Rabinor.

Such thoughts may not always make sense. Jacob says he doesn’t always think he’s fat, but worries about eating in front of others because of the way his face appears, saying, “Eating looks ugly.” He thinks about calories and fat content all the time, but he can’t remember exactly when he started worrying so much about weight.

Others cannot forget when they became consumed with concern about fat.

MORE THAN ADOLESCENT ANGST

Alex* confesses that she’s had issues with food and her weight for as long as she can remember.

“My mom was often on me about what I ate,” she says, then quickly adds, “but I was a chubby kid.” Alex is a tall, leggy 26-year-old blonde with a pretty smile. Looking at this seemingly confident girl, one would never guess that she struggled with her weight as a child—and, even more surprisingly, continues struggling. Alex rattles off some “characteristics” she has that contribute to her eating disorders—she is anorexic and bulimic—such as insecurity, sensitivity to others, and low self-esteem.

Not surprisingly, eating disorders reflect poor self-esteem, says Darlene Aiken, CEO of Inner Beauty Solutions, a Central Islip-based empowerment and leadership program for girls.

“Self-esteem is the basis by which we all operate. It is instrumental in everything we do. If your self-esteem is not intact, everything else is going to crumble, because that’s the foundation. And your family sets the tone for self-esteem,” says Aiken.

So it doesn’t seem hard to imagine why Alex, a clearly beautiful and fit-looking woman, looks in the mirror and sees a fat, ugly duckling.

“I was conscious of my weight at a young age when I shouldn’t have been, so, in a sense, that was the start,” recalls Alex. “I think my mom put ideas in my head some way or the other. As an adult now, I feel like she was trying to help me but went about it the wrong way or something, I don’t really know—I still struggle with trying to figure out why,” says the full-time nanny.

Alex bears the scars of a childhood marred by weight obsession.

“I have memories of my aunts and uncle making fun of me and making comments when I was a kid.  And I’m talking a kid, like 8 or 9 years old,” says Alex, who recalls a time when she was 10, and she and her cousins were waiting in the car for her aunt at the library. When her aunt came out she said to Alex, “I got you a book.”

“I was so excited because out of everyone she got me something. She handed it to me and it was a diet book,” says Alex. Then later that day, her uncle offered her cookies and soda.

“It was always so confusing,” says Alex, “the messages they were sending me.”

Alex says she quickly internalized the taunting and mixed messages, and at 13 started taking laxatives, beginning a long and painful cycle of starving, bingeing and purging. She became a closet eater, feeling she had to hide her eating from her mother.

Recently Alex’s parents renovated her childhood home, and she stumbled across a letter she wrote to her mom. It said, “I promise, promise, promise to go on a diet and start losing weight.” She was 8.

Aiken, who conducts a workshop on positive body image, says, “At an early age, children are bombarded with all ideas about what beauty should be. It’s up to parents to counterbalance that.”

But, some parents, like Fascia, a single mom, might not notice what is happening in their own homes. Her daughter suffered from anorexia right under her roof. Positive reinforcement is not enough, says Fascia, who often told Ashleigh that she was beautiful and that she loved her.

“My mom did everything for me,” says Ashleigh. She is now 16 and on her way to recovery. “I didn’t want her to think it was her fault. That’s why I never told her.”

Fascia begs parents to educate themselves.

“They tell you the signs for drug abuse, they tell you the signs for alcohol abuse—why don’t parents know what to look for when your kid is starving to death?” Fascia asks.

WANTING TO GET BETTER

Anorexia has one of the highest mortality rates of any mental health condition—5 percent to 20 percent of individuals suffering from anorexia will die, according to NEDA. But recovery is possible.

Ashleigh’s mother sought counseling immediately; intensive therapy has helped the once-74-pound teenager gain 13 pounds, putting her at the bottom of the normal weight class, Fascia says. And while mother and daughter are trying hard to keep Ashleigh healthy, the teen admits that it’s difficult sometimes, especially when she sees “really skinny girls who seem to have everything they want—I think, ‘I can do that too.’”

Alex says that she is proud of her full recovery, and hasn’t seen her therapist since her birthday last year.

Patty, who bottomed out at 82 pounds—35 pounds less than she should have weighed—now eats regularly and is at a normal weight; she looks sexy, healthy and fit. She says she stopped running the pro-ana website because, “You can’t get better when the only people you associate with are other people with eating disorders. You can’t stay part of the community forever—and I wanted to get better.” Patty battles small relapses often, though. On a bad day, or if something sets her off, she stops eating for a day or two until she says she “feels better about herself.”

Jacob thinks eventually he’ll get help, but doesn’t believe his health or his weight is a priority right now. “Nothing bad has happened to me so far. I’ll worry about it when it does.”

—Additional reporting by Melissa Wasserman

* Names have been changed.

Warning Signs of Anorexia Nervosa

Is it possible that your child is suffering and you don’t know it? According to NEDA, because of the secretiveness and shame associated with eating disorders, many cases are probably not reported and a majority of individuals who suffer go untreated.

Here are some common warning signs that indicate that a person may be suffering from anorexia, as compiled by NEDA:

• Dramatic weight loss.

• Preoccupation with weight, food, calories, fat grams and dieting.

• Refusal to eat certain foods, progressing to restrictions against whole categories of food (e.g., no carbohydrates, etc.).

• Frequent comments about feeling “fat” or overweight despite weight loss.

• Anxiety about gaining weight or being “fat.”

• Denial of hunger.

• Development of food rituals (e.g. eating foods in certain orders, excessive chewing, rearranging food on a plate).

• Consistent excuses to avoid mealtimes or situations involving food.

• Excessive, rigid exercise regimen–despite weather, fatigue, illness, or injury, the need to “burn off” calories taken in.

• Withdrawal from usual friends and activities.

• In general, behaviors and attitudes indicating that weight loss, dieting, and control of food are becoming primary concerns.

Health Consequences

Anorexia nervosa involves self-starvation. The body is denied the essential nutrients it needs to function normally, so it is forced to slow down all its processes to conserve energy. This “slowing down” can have serious medical consequences:

• Abnormally slow heart rate and low blood pressure, which mean that the heart muscle is changing. The risk for heart failure rises as heart rate and blood pressure levels sink lower and lower.

• Reduction of bone density (osteoporosis), which results in dry, brittle bones.

• Muscle loss and weakness.

• Severe dehydration, which can result in kidney failure.

• Fainting, fatigue and overall weakness.

• Dry hair and skin; hair loss is common.

• Growth of a downy layer of hair (“lanugo”) all over the body, including the face, in an effort to keep the body warm.

RESOURCES

The National Eating Disorder Association (NEDA)
www.nationaleatingdisorder.org

NEDA-LI Chapter
www.myneda.org//p.asp?WebPage_ID=717

Center for the Study of Anorexia
and Bulimia
www.icpnyc.org/CenterForStudy.nxg

Open Wide

By April Jimenez and Annie Blachley

Jamie slumps on the couch, watching TV, her eyes glazed over. She barely reacts to the shenanigans on SpongeBob SquarePants, her favorite cartoon. Her mother, Maria Larmen, worries that her daughter “isn’t even in there anymore.”

Two years ago, Jamie was a knobby-kneed 8-year-old with big blue eyes and long strawberry blond hair. But the child was, as her mother describes her, “out of control.”

“She wouldn’t sit at her desk at school. At home, she was up and down every five minutes, all day. During dinner, she’d get up, have outbursts. It took hours just to get her fed—then getting her to bed was an ordeal in itself. There were nights when I considered giving her NyQuil or Benadryl, just to get her to sleep,” Maria admits sheepishly.

Then, in 2006, Jamie was diagnosed with attention deficit hyperactivity disorder (ADHD) and prescribed Strattera. Her mother says she’s never been the same.

“At first I thought it was great: She was calm for the first time since she was 2. I was so grateful to have moments to think, moments of silence. But after the shock wore off, I started to realize that it was an abnormal silence,” says Maria.

Jamie had all but gone mute. She stopped being rambunctious and having outbursts at dinner. She went right to bed at night when she was supposed to. But she also stopped talking—almost completely. Her appetite diminished, and now she spends most of her free time at their small home in Shirley in her room, alone, just staring, her mother says. Jamie’s doctor told Maria to wait it out, saying this was just the natural course of the medication. But Maria is concerned. She wonders if she should take Jamie off the medication.

“I am scared that it will put her fire out forever. I couldn’t live with that,” says Maria.

Situations like this are common. An estimated one in 10 American children and adolescents  suffers from mental illness severe enough to cause some level of impairment, according to the National Institute of Mental Health (NIMH).

With so many being diagnosed with ADHD, depression, anxiety and other disorders, the number of children taking medication for such problems has surged since the mid-1990s—which was, coincidentally, right around the time that atypical antipsychotics, a new category of medications, came on the market. Between 1993 and 1995, antipsychotic medications were prescribed to 275 per 100,000 children; in 2002, such drugs were prescribed to 1,438 per 100,000 children. Those numbers, from a NIMH study published in 2006 that looked at data from doctors’ offices, point to an increase of more than five times.

Some parents, though, say the only way that their kids can get through the day is with medication. The media focused on this in January, on the Public Broadcasting System’s Frontline. The show examined why more than 6 million children in this country—some as young as 2—are being treated for what doctors describe as serious psychiatric disorders.

Some children are prescribed multiple medications: The first one prescribed causes unwanted side effects, another is prescribed to counteract those effects, the second drug causes other undesirable results, so a third medicine is prescribed to counteract the second medicine’s effects. Children can end up on multiple drugs, their prescription “cocktail.”

But while many insist such treatment is necessary, are we doing our children more harm than good by giving them these drugs?

UNCHARTED TERRITORY

Holly and Howard Jackson, of Woodmere, believe that without the drugs their son Marcus is on, they’d never be able to survive. Marcus, now 5, was “a monster” at 18 months, says his mother. At 2, he was diagnosed with bipolar disorder and prescribed an arsenal of medications. Bipolar disorder, once known as manic depression, in children is one of the most controversial diagnoses, and a polarized medical community argues whether it exists at all.

But Marcus’ parents were at their wits’ end. “I was scared that he’d never be able to go to school, be in a play, join a team or really be part of anything because of the way he acts,” remembers Holly. “The doctors tried everything and finally we got to a combination that works the best.”

While medicating children might seem like a heaven-sent solution for parents, some doctors are concerned about the long-term effects that such heavy use will have on young children, both mentally and physically. And while researchers have started studying children as young as preschool age—because these disorders often start in early childhood—much is not known about such conditions or the medications.

The drugs commonly prescribed to individuals displaying unstable behavior, including aggression and mood swings, are psychotropic medications. They include antipsychotics (to treat schizophrenia and mania), antidepressants, anti-obsessive, antianxiety, anti-panic and mood-stabilizing medications.

But because of the lack of data about such medications’ effects on young brains and bodies, many of these drugs haven’t been given FDA approval for children. They are being used “off-label,” stirring up murky water for physicians.

There’s the catch-22.

Most drugs approved for adults have been studied only in adults. Children may react very differently than adults. When drugs are given FDA approval, doctors are free to legally prescribe them to children even though that approval was for adults. They can also prescribe them for disorders other than the one for which they were originally approved.

“Off-label is a legal term that prevents the drugmaker from being held financially liable if a doctor uses the drug for a reason that it was not approved for and the patient has an adverse reaction,” says pharmacist Vincent J. Giordano, R.Ph., a former employee of psychiatric children’s facility South Oaks Hospital in Amityville.

“The truth is, a lot of drugs are used safely off-label,” he adds, citing the use of the antidepressant Wellbutrin as a smoking-cessation aid. But Giordano says that it is difficult for companies to test drugs in children.

“The question here is, how do you ethically do a drug study on children?” asks Giordano. “But even the best drug study can’t possibly predict everything, so the FDA relies on pharmacists, doctors, and patients to inform them of any side effects they are noticing. If we find the drug is doing more harm than good, we can get it taken off the market.” Some might argue that it’s a necessary experiment.

Some parents are up in arms about their children being used as guinea pigs by pharmaceutical companies. Lillian Overton’s son (the names have been changed because of involvement in a lawsuit pertaining to this case), Michael, was prescribed the antipsychotic Thorazine as a child, after being diagnosed as schizophrenic. Doctors played with Michael’s dosage for years, Lillian says. After about three years, he started rocking back and forth, almost uncontrollably.

“He started to suck in his lips and blow them out, like he was always chewing on something. It was like he had no control over his body or his face,” says the Ithaca mother. Michael cannot control his body; he suffers from tardive dyskinesia, an untreatable movement disorder that develops in some patients taking antipsychotic drugs.

“We were never informed; we were never told that this could happen. We were never given any alternatives,” says Overton. “These drugs took away a part of Michael’s life. You can’t put a price on that.”

Now, another conundrum has surfaced. Starting around 2003, concerned parents began wondering about whether the antidepressants their children were taking were causing suicidal thinking and behavior, after regulators issued public health warnings—a “black box” label on certain medications—about a possible link. As a result, antidepressant medications for youths decreased by approximately 22 percent nationwide, according to a 2007 Centers for Disease Control and Prevention (CDC) study.

But between 2003 and 2004, more young people committed suicide. Rates increased by 14 percent, the largest year-to-year change in suicide rates in this population since the CDC began collecting suicide data in 1979. Researchers concluded that youth suicide rates increased after the children discontinued medication. More data is being studied, but if the conclusion holds true, it means that the benefit of young people taking such medication—choosing life—far outweighs side effects.

BOUGHT AND PAID FOR

Some observers believe that doctors do not supply information on alternatives. Pino LoGiudice, N.D., a doctor of naturopathic medicine practicing in Manhattan and Syosset, says that nutrition is another approach that can be used alone or as a supplement to other alternatives.

“However, absolutely there are times when medications are warranted and should be the initial treatment,” she adds. “My concern with these children is that no other options are then explored. If a child needs to be put on a medication, all the underlying support of nutrition or alternative medicine still should be implemented so that there is an exit strategy on how to get them eventually off the medications.”

Others reject that these disorders even exist, calling the diagnosis a ploy for doctors to create lifelong consumers out of children, to keep themselves in business.

Fred A. Baughman Jr., M.D., a neurologist/child neurologist and author of The ADHD Fraud, says simply, “It’s all profit driven.” He insists that there are too many physicians, saying, “When you have plenty of patients, you make each one a lifetime patient by putting a label on them and putting them on drugs they will never come off.”

He labels it “consumerism in medicine.”

There is also speculation that doctors are being courted by pharmaceutical companies to push certain drugs, so physicians offer no alternative, non-drug or otherwise. Medication manufacturing and marketing has meant big business: In 2000, the U.S. Drug Enforcement Administration estimated that prescriptions to treat ADHD increased by 500 percent during the 1990s; between 1994 and 2001, prescriptions for psychotropic drugs for teenagers rose 250 percent. Another coincidence: After 1999, the federal government permitted direct-to-consumer advertising, along with looser promotion of off-label use of prescription drugs. The same 2006 Brandeis University study that cited the 250-percent increase also found that by 2001, one in every 10 doctor’s office visits by teenage boys resulted in the boy receiving a prescription for psychotropic medication.

David W. Oaks, director of MindFreedom International (MFI), believes that many are coerced or forced to take such drugs, because it seems easier to medicate children than to work through a painstaking situation. He works with MFI, in Eugene, Ore., an independent grassroots organization that unites other groups and individuals and advocates for human rights in the mental health system. He was institutionalized after being diagnosed as bipolar, before becoming an activist.

Oaks is careful to say that MFI is not against the use of drugs, but instead supports patients being able to make an informed choice. Alternatives would include counseling, peer support, job programs and supported housing. “Unfortunately, all these kinds of approaches are off the table,” says Oaks. “Often, drugs are the only option given.

“There’s no diagnostic test. No brain scan, no urine test,” says Oaks. “If a doctor says your child has a biochemical imbalance, ask to see the lab results. You’ll never see them, because they don’t exist.”

Dr. Andrew Adesman, chief of Developmental and Behavioral Pediatrics at Schneider Children’s Hospital in New Hyde Park, specializes in treating kids who have ADHD and autism spectrum disorders. He disagrees with Oaks, pointing out, “We do not have blood tests for autism or mental retardation; does this mean these are also spurious diagnoses?”

Focusing on the treatment of ADHD specifically, he says, “Yes, the medication is often most accessible and may be perceived as expedient—since it works so quickly and is less disruptive than other forms of treatments—but it is also most effective. Should parents be obligated to settle for less-effective interventions because someone else is not comfortable with a proven therapy? I think not. I believe strongly that patients should discuss all effective treatment options with their treating clinician and then together decide what treatments—or combination of treatmentss—is most suitable.”

YOUNG CANARIES IN COAL MINES

The question of how much medicine is too much struck home in 2006 with the high-profile death of Rebecca Riley, a 4-year-old girl who died from an overdose of antipsychotic medications she had been prescribed by psychiatrist Dr. Kayoko Kifuji at Tufts-New England Medical Center, in Boston. The child had first been taken to the doctor at the age of 2 because she was hyperactive and had trouble sleeping. Though she could barely speak at that age, Rebecca was diagnosed as bipolar. To stabilize her mood, Rebecca was given a prescription drug cocktail: an antipsychotic, an antiseizure and a blood pressure drug. While Rebecca was taking those three medications, her mother gave her children’s cold medicine as well, to ease the child’s cold symptoms. The combination turned out to be lethal.

Rebecca’s parents, Carolyn and Michael Riley, now awaiting trial for second-degree murder, say that they followed doctor’s orders. Prosecutors, however, charge that the Rileys deliberately gave their daughter too much medication, so she would sleep.

Who is to blame? Is it Rebecca’s parents, who gave the child more than twice the dosage—plus cold medicine? Or is it the doctor, now on paid leave, who diagnosed the 4-year-old as bipolar—because of hyperactivity and trouble sleeping—and prescribed Clonidine, Depakote, dextromethorphan and chlorpheniramine? Each medication Rebecca took had a side effect, and sometimes side effects can be as debilitating as, or worse than, the disease. In this case, the effect was deadly.

Another question is, who is usually given such strong medications? A San Diego State University study of more than 3,000 children and adolescents compared those in the child welfare system with young people not receiving welfare. The study found that, between 2001 and 2002, 13.5 percent of those in child welfare took psychotropic medications. Its conclusion: “These national estimates suggest that children in child welfare settings are receiving psychotropic medications at a rate between two and three times that of children treated in the community.” Again, are children in the welfare system serving as guinea pigs? Will they be those who are most often given the latest batch of psychotropic children’s medicines, which may cause side effects ranging from the manageable—weight gain—to the horrific: Parkinson’s disease or a chemical lobotomy?

The overmedication of America’s children has been hotly debated among activists, parents, the medical community and the media for years. Everyone blames someone else.

No medicine comes without risk. But again, what if the drug’s beneficial effects make the child’s and the family’s lives better? What if such medicines make a crucial difference, keeping a young person alive, to look forward to a better future? In the end, it is up to the parents to ask questions, heavily weigh the pros and cons, and make the most informed choice they can to safeguard the well-being of their children.

WHAT TO DO

Many children “act out” after experiencing, say, a move to a new home or a birth in the immediate family. This behavior is temporary and usually resolves in time. But parents should consider problems as being serious and needing attention “when they are severe, persistent, and impact on daily activities,” according to the NIMH. This includes changes in appetite or sleep, social withdrawal, or fearfulness; regressive behavior such as bed-wetting; sadness or tearfulness; self-destructive behavior such as head banging; or a tendency to have frequent injuries.

If you are concerned about your child, first, consult your child’s doctor and request that a complete health examination be done. Ask the doctor if your child needs evaluation by a specialist in child behavioral problems, such as a psychiatrist/pediatric psychiatrist, psychologist, a social worker, counselor, and/or behavioral therapist. Other resources would include a registered dietitian, nutritionist, physical therapist, art therapist, alternative medicine practitioner, support groups and, of course, your child’s teachers.