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What do we owe a special boy like Anthony?

By Carol Costello, CNN
June 10, 2014 -- Updated 1605 GMT (0005 HKT)
Carol Costello's nephew Anthony, left, in a photo from the early 2000s, with his parents Johanna and Tony, and siblings Christina and Vincent.
Carol Costello's nephew Anthony, left, in a photo from the early 2000s, with his parents Johanna and Tony, and siblings Christina and Vincent.
STORY HIGHLIGHTS
  • Carol Costello's nephew was born with a disability that affects behavior
  • She says his school was unable to cope with him and provide proper education
  • At times, Anthony was placed in a "chill room" with no notice to parents, she says
  • Costello: After parents objected, Anthony transferred to a new school and is thriving

Editor's note: Carol Costello anchors the 9 a.m. to 11 a.m. ET edition of CNN's "Newsroom" each weekday. The opinions expressed in this commentary are solely those of the author.

(CNN) -- Anthony was a beautiful baby. He looked more like my sister-in-law, Johanna -- not so much like my brother Tony. But Anthony was pale, too, and so very, very tiny.

When I held him for the first time, I wanted to feel joy. He was my first nephew, my family's first grandson. But there was no joy. Anthony was strangely motionless. He was floppy, as if he lacked all muscle tone. He didn't cry. He didn't gurgle. He didn't smile. He was like a living doll -- a 5-pound living doll.

Sadly, my family's situation is not unusual. One in six babies are born with developmental disabilities. A happy moment becomes laced with fear of the unknown. A lifetime of struggles begins.

Carol Costello
Carol Costello

Anthony's story is a window into what parents face when their child is born with a rare disability, one that taxes society's promise to develop each child to his or her fullest potential. There are 132,000 students in U.S. schools like Anthony, children with "multiple disabilities," a broad category under the federal Individuals with Disabilities Education Act of 1975.

They are a particularly challenging population among the nation's 6.5 million special education students. Anthony certainly -- and through no fault of his own -- would put that system to the test.

Anthony was eventually diagnosed with Prader-Willi Syndrome, a genetic disorder where certain chromosomes have gone missing, leading to behavioral problems and cognitive disabilities. Oddly, the absence of one chromosome meant this limp, undernourished, darling baby would forever be fighting off a blinding appetite that could lead to morbid obesity.

As Anthony grew, Tony and Johanna were forced to put a lock on the refrigerator because Anthony would clean it out. His appetite was wildly out of control and desperation would set in when he was not able to satisfy it. There was nothing inside him telling him when to stop eating, so his parents had to put anything edible out of reach, including soap, shampoo and even garbage.

Sometimes, our Christmas celebrations were suspended. No one could enjoy eating anything while restraining a boy from eating everything. Anthony would bubble with anxiety, then crash into depression.

Still, we hoped Anthony could live a normal life. His awkward smile was endearing. He seemed capable of learning despite the autistic aspects that his Prader syndrome brought to life. He crawled late, but he crawled. He delighted in learning about stars, planets and geography. He insisted on gifts that were appropriate for his chronological age, not his "mental" age.

'Your entire chain will be strengthened'

As soon as Anthony turned 5, Tony and Johanna enrolled him at Green Elementary School in northeast Ohio. Their daughter had gone there, and it is one of the best schools in the state.

We wondered whether Anthony could flourish in a public school, but Johanna was confident.

"If you are capable of dealing with your weakest link, your entire chain will be strengthened and it will benefit everybody," she told us. "Everybody is going to run into problems somewhere and it doesn't have to be a big expense if you do it right." We admired her optimism, her eternal belief that Anthony would blossom, just like any other kid.

Like all parents with special needs kids, my brother's family had the law on their side when it came to getting the best education for their special needs child. The Individuals with Disabilities in Education Act guarantees kids such as Anthony a "free appropriate public education"-- or a "FAPE."

This law guaranteed an educational plan that came with small class sizes, specialty teachers, counselors and a segregated space for some activities.

"Every parent wants the best for their child, but the word 'best' isn't in the law, it says 'appropriate,' which they usually give, but parents want more, they want a happy life," says Paula Goldberg of the PACER center, an advocacy organization for children with disabilities.

In the first few years at school, Anthony learned to read! He counted and knew colors. He couldn't deal with abstract concepts, but he could understand basic information, and he mixed in with his peers. In third grade, Anthony spoke in front of 300 kids at Springfield High School about kids with disabilities. We were so proud. What a fearless boy! Just like his mom and dad.

Regression and weight gain

But, as Anthony grew older, he seemed to be folding into himself. It became difficult to get him to pay attention to what you were saying, so difficult that you'd sometimes give up, exhausted.

Tony and Johanna began to suspect Green Elementary was becoming lax in areas that were critical to keeping Anthony functional. Johanna said she would find candy wrappers in his pockets when teachers weren't supposed to give him food. It wasn't long before his weight ballooned from 140 pounds to 200.

Anthony was clearly stressed, and becoming obsessive-compulsive, flying into a rage if a toy was out of place, unable to cope with changes to his routine, which seemed to happen often at school. He would try to grab food off your plate and exhibited increasing signs of autism, desperately wanting to belong even as his mental processing was way off. That year, in 2009, at school, he bit his aide.

Still, it is required by federal law for teachers to come up with a detailed plan to educate a student like Anthony, no matter how difficult. (Green's administrators have declined to talk about Anthony's case.)

I do know, like many school districts, Green opted to place Anthony in a "chill room." A room separate from the other kids, where Anthony could be alone for an agreed-upon period to settle down until he was able to return to class.

According to National Public Radio's state impact report, public schools in Ohio and Florida regularly sent kids to "seclusion" -- or "locked cell-like" rooms like a tiny room or a closet.

In 2009-2010, Ohio schools sent students to "seclusion rooms" 4,637 times. In more than 60% of the cases, disabled children were those being secluded.

And before 2013, Ohio schools were not required to inform parents or follow any guidelines when they decided to lock a child away for hours at a time.

Anthony finds his voice

The most painful part for those of us who love Anthony was that he could not articulate what happened at school.

But, in ninth grade, Anthony finally found the words. He suddenly shared a story about "the closet." In a halting voice, Anthony described how he was "dragged from place to place" for being bad and spent hours napping in a room the size of glorified walk-closet. My brother, Tony told me, "They got him an egg carton to sit on and a mat to sleep on."

School officials claimed, in court documents, the "chill room" was big enough to house an adult and contained "a mattress pad." They also admitted, on at least two occasions, "He (Anthony) remained in the chill room for an entire afternoon." Teachers also testified "he was never alone," and that sometimes Anthony refused to wake up, forcing them to "roll him," because "he would stay on the pad and refuse to get up."

Instead of finding a way to deal with the problem, though, teachers allowed Anthony to miss class. According to Anthony's parents, they didn't even send home lessons so Anthony could make up the work.

His parents complained to the state.

"They [school officials] honestly did not have the knowledge to help him," says Michelle McGuire, a lawyer hired by Anthony's parents.

"They'd give him a one-to-one teacher in math who would teach about a square root of the hexagon, and he's doing 2nd grade math. ... His main teacher was maybe 5'4" and probably about 130 pounds, really well intentioned, and tried, but absolutely couldn't handle him.

"Not only would he suddenly strip naked, but he would defecate, urinate on the floor, run around and hit and kick and grab his teacher by the hair, then run away, and when they caught up to him, he would hit them and scream and hit and kick some more. They couldn't handle him."

Tony and Johanna yearned to enroll Anthony in a more appropriate school, but schools for kids such as Anthony don't come cheap, and Green Elementary insisted it was trying to care for Anthony.

Caught in a cost crunch

Sheldon Horowitz of the National Center for Learning Disabilities says that cost is often the issue because local and state governments have to fill in for the shortage of federal funding.

"Kids with these issues cost not just money, they cost faculty and faculty time, training time, space and transportation and security, psychological, social and mental health resource. They need a complicated support system because they are complicated," he said.

If schools are unable to provide those things, then parents can demand the public school system pay for private education. However, those local school districts can contest parents' demands because -- you guessed it -- it's cheaper for public schools to provide special education themselves.

Understandable, in Anthony's case, because there are just three schools in the country that are expert at taking care of kids like him. They can cost up to $200,000 per year.

In the end, it was Anthony who forced the issue.

It happened one morning, at home, in the kitchen. Anthony refused to go to school. Not only that, he wanted food. NOW. And, just as he did at school, he flew into a rage, but this time he grabbed steak knives from the drawer. Tony and Johanna called the police.

"At first they (the police) wanted to use a stun gun on Anthony," Johanna remembers. "I just wanted them to help us restrain Anthony until we could figure out what to do."

She shielded her son from the officer's Taser until my brother called an ambulance. Anthony ultimately ended up at the Children's Center of Pittsburgh for six weeks.

At that point, Anthony's parents turned to the state of Ohio, seeking a way for Anthony to get a better education.

It took an expensive lawyer and months of testimony, but they settled their case. An impartial hearing officer did find that the school had not afforded Anthony a free, appropriate public education, but other than that, I can't tell you details, because the terms do not allow for public disclosure.

I do know Anthony now attends the Latham Centers in Cape Cod. There are 40 students there just like Anthony. He likes them. His teachers understand his disabilities. Some of them have 30 years' experience with Prader-Willi kids and embrace any available training.

Anthony is of normal weight, no longer has violent outbursts and has his frustrations under control.

The last time I saw Anthony, we were in a restaurant with our extended family. Anthony ordered his own food. He paid attention to calories and fat. Veggies and protein, please! There were no tantrums.

And, guess what? He was excited about the prospect of going back to school.

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