ADOPTING A CRUSADE

Pittsburgh Post-Gazette (PA)

HOW 'SOME MOMMY FROM PENNSYLVANIA' IS CHANGING THE WAY AMERICA'S FOREIGN ADOPTION AGENCIES DO BUSINESS

Author: BILL STEIGERWALD, POST-GAZETTE STAFF WRITER

In 1991, Ti Tepper didn't want to be an activist.

She didn't want to be a consumer advocate for families who adopt children

from foreign orphanages.

She certainly didn't want to change the way the international adoptions industry operates in America.

All she wanted in 1991 -- perhaps a little too much for her own good -- was to become a mother.

Tepper got her wish that summer, when she and her husband Steve flew to Romania and adopted a tiny, sickly 18-month-old Gypsy boy named Drue who had been raised in one of that country's subhuman state orphanages.

It was a decision that brought Tepper the kind of joy and happiness that only a new parent can know and feel. It also dramatically changed her life.

When Tepper brought Drue home to Washington, Pa., she was told by the doctors she took him to that all he needed to thrive was lots of love and attention and, as she often quips, "a few trips to Toys 'R Us."

But instead, Thais (Ti-eece) Tepper soon found herself bouncing from doctor to doctor, trying to find out why Drue didn't walk until he was nearly 2 and didn't talk until he was almost 3 1/2, and why he was so clingy and anxious one minute and dangerously impulsive and aggressive the next.

"We wandered through Pittsburgh, as money flew out of my checkbook at a fantastic rate," Tepper says. "I was saying, 'I've got this child and something horrible is wrong with him. Tell me what it is.' "

It was two years before Tepper learned the real cause of Drue's problems -- something called "attachment disorder."

But attachment disorder, she found out, was nothing new or exotic. Child experts studying children in American orphanages had diagnosed and written books about it 50 years ago. It was one reason America's orphanages were closed in favor of foster care.

Why then, Tepper asked herself, did she have to waste two years ''rediscovering" it on her own? Why hadn't her adoption agency told her about it? Why didn't doctors know about it?

And why were so many other mothers around the country telling her that their adopted Romanian children had problems exactly like Drue's?

Out of one rookie mother's frustrating quest to get help for her tiny son, a crusader was born.

Today Ti Tepper -- who laughingly refers to herself as "some mommy from Pennsylvania with a botany degree" -- is a respected expert on the many esoteric psycho-medical syndromes and disorders that afflict children who've spent their infancies in orphanages.

In addition to co-running the

, which she helped found in 1994, she has been setting up regional conferences for parents, speech and learning specialists and adoption professionals in Chicago and Washington, D.C.

To adoptive parents around the country who are desperate for the information she and her network dispense, Tepper is a godsend.

But her knowledge and zeal have also gained her the respect of many doctors, social workers and other foreign adoption experts around the country.

Locally, one of those experts is Dr. Sara Springer of Mercy Hospital. A faculty pediatrician at Mercy's Children's Medical Center, she says Tepper will be working with her to develop a full spectrum of medical and developmental/behaviorial services to treat children adopted from foreign orphanages.

Tepper's influence as a crusader is no accident. She's a model activist: organized, energetic, persistent, outspoken, confident, motivated and righteous.

One of the reasons Tepper became a crusader is simple: She doesn't want what happened to her and other adoptive parents of Romanian orphans to happen to any other adoptive mother. She doesn't want any more children to suffer because of ignorance.

But Tepper's major mission has been to persuade, goad or shame foreign adoption agencies into doing what she says all responsible businesses should do -- fully inform their customers. Before they adopt.

Tepper and her allies are beginning to make real headway. On April 29, after she promised not to attack any foreign adoption agencies by name, she was invited to Washington, D.C., to speak to a national group of people who own and work at foreign adoption agencies.

Not only was Tepper not tarred and feathered as she had feared, but her speech, documenting 90 years of research into the debilitating effects of orphanages on children, was reprinted and sent to the 150-plus agency representatives who attended.

In some cases foreign adoption agencies that Tepper has badgered with letters and phone calls have augmented their pre- and post-adoptive classes to address concerns she's raised.

Tepper knows full disclosure of all the potential downsides of adopting an orphanage baby might harm an agency's bottom line.

Tough, she says: Agencies have a moral -- if not legal -- obligation to warn potential parents "that children from orphanages have, historically, had developmental delays and emotional and social problems."

Tepper says all foreign adoption agencies -- virtually unregulated by government or by any industry-wide group -- need to do what agencies like Tressler Adoption Service in York, Pa., and Holt International in Oregon already do.

They need to tell clients in advance what medical books to read, what tests and evaluations to schedule and what to ask their insurance companies and school districts.

They also need to ask adoptive-parents-in-training some tough questions before they choose to adopt a child that may, as Tepper bluntly puts it, be ''damaged goods."

For example, "What is the reaction of your family going to be to a child who may not look real good at Thanksgiving dinner and Christmas, and may be an embarrassment at the mall?"

Not surprisingly, Tepper has been criticized for this kind of ungentle talk. She also causes distress by saying such unequivocal things as "The overwhelming research into orphanage systems is that they don't work. If there is any literature on how wonderful orphanage children come out, I haven't seen it."

To some of the parents of the more than 100 Russian orphans now living in Pittsburgh, Tepper is a noisy alarmist.

They say their Russian children are doing fine and won't turn out to have the same long-term medical, behavioral and social problems that many of the 3,000 Romanian orphans adopted by Americans since 1991 have developed.

Tepper thinks they are foolish to ignore her warnings, "My phone rings constantly with people who have already made the realization there's something wrong with their children."

As Ti and Steve Tepper know from experience, the watchword when adopting overseas is buyer beware.

Few of the 8,000 foreign adoptions in America each year are quick, risk- free, cheap or easy on the emotions. Political and legal complications are common, especially now that a greater number of adoptions are coming from chaotic Eastern European countries.

Accurate information about a child's medical history or its parents' background or anything else can be nonexistent. And often parents can be too desperate for a child to think straight or heed cautions.

Many adoptions turn out fine. But the Teppers' -- which cost them $15,000 in adoption fees and other expenses -- was a misadventure from the start.

It began in the summer of 1991, when they were arranging to adopt a Hispanic-Indian child from Bolivia through the World Child adoption agency in Washington, D.C.

When World Child told them the process would take another nine months, the Teppers decided on a faster alternative -- adopting a Romanian child. Two weeks later, on July 16, 1991, the Teppers were meeting with Drue and his mother in Arad, Romania.

It was obvious that Drue (then named Dragomir) had physical problems, Tepper says in her living room, flipping through a photo album of her Romanian trip.

"His head was flopped over," she says, pointing to a photo of a vacant- eyed baby and his mother. "He wouldn't respond to us, wouldn't make eye contact. He never said a word, or squeaked or anything. He was like a Raggedy Andy."

Tepper, 42, wasn't so naive as to expect a perfectly healthy child. She expected "a skinny kid, with parasites, which were common things you found in rural societies. We were told that he would have developmental delays."

Instead, what she and Steve saw was a physical wreck. Drue's face was noticeably asymmetrical, a result of lying in his crib all day and sucking his thumb in a strange, backward way.

He had a small cyst near one eye. He had no muscle tone, because he had lived his whole life in a crib and had virtually never crawled. His tiny body was covered with scabies, a tiny, highly contagious skin mite.

The Teppers were suddenly faced with the biggest decision of their married lives -- take Drue or leave him. The Romanian government was closing off foreign adoptions the next day. They had no time to chose another child and had until 6 a.m. to decide.

It was Ti's call. She would be home with Drue all day. She and Steve returned to their hotel room, where she agonized until 5 a.m.

"This is not what I had pictured," Tepper says. "This little thing covered with bugs. I had to talk myself into believing I could do this."

Back home, fixing Drue's physical faults was much easier than understanding or treating his strange behavior.

Drue's physical and developmental problems were not nearly as severe as those of many of the Romanian orphans adopted by Americans. But because he had so little human contact in the orphanage, he was suffering from serious sensory deprivation. It was an assault on Drue's entire being to be bathed, touched or cuddled. When picked up, he became as rigid as a bar stool.

Toys bewildered him; he had no idea what to do with a Jack-in-the-box or a toy car. Food that was chewed was also an affront to the stimuli-starved senses of a child raised on milk and watery gruel.

Tepper says it didn't take a neurosurgeon to know something was seriously wrong with Drue, who made mooing sounds when he was happy and flapped his arms when he was excited.

He finally began walking at 22 months. But at age 3 he was still so tactilely defensive he couldn't tolerate the lightest touch. He couldn't stand to have his teeth brushed, or walk on grass or sand or anything with any texture.

Nor could he run or jump, skip, or hop, Tepper says. He was so ''gravitationally insecure," he screamed in terror when he was placed on a tricycle or a teeter-totter. He was terrified of stepping off a curb.

His first word -- "whale" -- came just before his third birthday. Tepper cried. Within a few months his 10-word vocabulary included "ma," "da" and ''juice."

He pointed a lot. He signed a lot. He understood stuff, Tepper says. But it wasn't until he had been in occupational therapy for six weeks that he spoke his first sentence: "More milk, ma." Tepper says, "I went 'Ahhhhh.' "

Tepper explains why occupational therapy -- which worked to improve his delayed gross motor skills -- helped him speak: His brain was so overworked worrying about falling or being touched that it didn't have time to learn how to talk.

Ti Tepper, a former county park naturalist who quit her job as Washington, Pa., health inspector when Drue was adopted, was not born a crusader. She evolved into one.

Her parent network traces its roots to March 1993, when she placed a small article in three regional newsletters for parents of Romanian orphans. She described Drue's problems and asked anyone with a child with similar behavior to contact her.

Tepper was worried that Drue's problems were caused by her own poor parenting skills. But within a week, 12 people from Maine to Florida had called her.

"They said, 'Oh my God! How could you describe a child who's acting exactly like mine?' "

Soon Tepper knew of 50 people. By January 1994, she announced the formation of a support group for parents of Romanian orphans and planned a conference in Washington, D.C., that spring, expecting 40 people.

When 81 showed up -- including several families with Russian kids -- Tepper says it "dawned on me that we were going to see the same problems repeat themselves with the Russian children." The network was broadened to include all children from Eastern Europe.

Today Tepper estimates that 600 names are on a mailing list of the Parent Network for the Post-Institutionalized Child. The group's information -- dispensed in 12-pound packages -- has been received by about 1,000 people.

Eventually, based on her own tireless research and conversations with other parents, Tepper concluded that Drue, who was then 4, had attachment disorder. Allegheny General Hospital developmental pediatrician Rick Solomon quickly confirmed her diagnosis.

Attachment is the emotional bond formed between a baby and its primary caregiver for the first two years of its life.

"Everything an infant learns comes from a primary caregiver, like little building blocks," Tepper says. "How you perceive yourself and learn language. How you learn to process what you hear and see."

Attachment disorder is what results when children are deprived of the constant, dependable love, touch and attention of a primary caregiver. It can occur in an institution, an abusive home situation or when a baby is neglected or passed around among foster families.

When attachment fails to occur, a long list of psychological, behavioral, cognitive and developmental problems of various degrees of severity can result.

They include a lack of conscience, a poor attention span and low self- esteem, as well as an impaired sense of time, difficulty in thinking ahead, a low IQ and the inability to process auditory or visual information.

At its most severe, an attachment-disorder child has the symptoms of a psychopath -- everything from an inability to give or accept affection to preoccupation with fire and gore.

Various therapies -- and not merely the passage of time or lots of love -- will fix many of these problems, Tepper says. But the earlier they are administered, the better, which is why she is so angry it took her two years to begin the right treatments for Drue. Does Ti Tepper, Average Mom turned expert, really know what she's talking about?

One national expert who thinks so is Dr. Dana Johnson of Minneapolis, the head of the neo-natal unit at the University of Minnesota's international adoption clinic.

"Orphanages are really, really bad for normal infant development," Johnson says. He estimates that a newborn left in an institution for more than a year has only a 10 percent chance of being normal.

Johnson, one of the country's few specialists in adoption medicine, has a high opinion of Tepper. He joined the 180 parents, doctors, social workers and adoption agency workers who attended Tepper's April 1 conference in Washington, D.C., which was sponsored by the National Institutes of Health.

"I went to learn from Ti and the other parents," he says. "I appreciate Ti's perspective, because there are lots of people who don't want to acknowledge there are problems.

"Also, a lot of kids just aren't being evaluated properly or their diagnoses aren't appropriate. ... These kids are often not well understood."

A local Tepper supporter is Sherry Anderson, program director of Family Connections at Three Rivers Adoption Council (TRAC). TRAC is a consortium of about 50 adoption agencies and adoptive parents groups in Pennsylvania, Ohio and West Virginia.

She thinks Tepper is performing a valuable service, even though people get testy about some of the things she tells/warns them about.

"A lot of people get on Ti's back for being an alarmist and for being a Cassandra," Anderson says. But, "In an area where you have so much room for denial, it's good to have someone who screams loud about the problems."

Mary Ford is a research assistant at the North American Council on Adoptable Children in St. Paul, Minn., one of the premier adoption advocacy groups in the country.

"She's got the facts and all the big names," Ford says of Tepper. "She's extremely articulate and long-winded, but she has her finger on the pulse of international adoptions."

Ford estimates that most of the 2,000-plus Russian orphanage children eventually will develop attachment problems.

"At age 5 and 6 is when they show up in the mental health system," Ford says. When they enter kindergarten and early grade school, they become ''stressed and can't cope." That's exactly what Tepper says.

However, Susan Luttner, one of the members of the Russian group here, says the two Russian 3-year-old girls she adopted last fall are doing fine.

"I'm very pleased and happy and my girls are well adjusted socially and emotionally, without any attachment disorder," says Luttner, a Lutheran minister from Pittsburgh's Troy Hill neighborhood.

Luttner thinks Tepper wrongly attributes all of the Romanian children's problems to being raised in orphanages.

Luttner, like Tepper, adopted through the World Child agency. Both women also had their home studies (preparation classes and background checks necessary to become an adoptive parent) done by the Lutheran Service Society of Western Pennsylvania. Luttner says before she went to Russia she "knew what to expect."

She says she was given a great deal of information about the potential downsides of adoption -- including attachment problems and Russia's high incidence of fetal alcohol syndrome -- in classes conducted by the Lutheran society.

The director of the society's adoption program, Kirsti Adkins, says her agency has done the home-study work for about 40 Eastern European adoptions.

It's still too early to know how the Russian children will turn out in the long run, Adkins says, because many children have not adjusted to their new environments yet and few have hit school age.

Adkins is not critical of Tepper, but she puts her and her gloomy message in perspective.

"When she talks about this, she is speaking from her own experience. Others have had experiences similar to hers and there are others who have had different experiences."  Adkins' perspective on Tepper pretty much jibes with the opinion of

, the executive director of World Child Inc. in Washington, D.C.

Goolsby says Tepper sees orphanages as virtually the sole cause of a child's problems, when it could just as easily be poor pre-natal care or a parent's heavy drinking, smoking, poor diet, or something else.

She knows what Tepper thinks of most adoption agencies, including hers: that they just take their money and run. That they don't care enough to follow up afterwards. That -- as the irrepressibly brassy Tepper once accused Goolsby -- they "sell kids like refrigerators."

Yet even Goolsby admits Tepper is raising important issues.

She also says Tepper is having an impact on the way clients are prepared by adoption agencies, including her own. "We are telling families more and more," Goolsby says.

"We always talked about attachment and bonding, but we make it more of an issue now. ... If we sinned and didn't tell them enough up front, we're making up for that."

World Child has handled the adoptions of 350 Russian orphans, Goolsby says, and it has had "very few reports" of attachment problems. Barbara Clements of the International Assistance Group in Aspinwall says the same thing.

Clements is co-director of IAG, which since 1993 has helped American families adopt more than 200 Russian children between the ages of six months and 12, nearly half of whom live in the Pittsburgh area.

She says there is a huge difference in quality between St. Petersburg's well-run orphanages, where IAG finds all of its children, and orphanages in Siberia or Romania.

Yes, the Russian children are developmentally behind American kids of the same age. But she says, "Our kids blossom and grow and their personality changes. What they need is a loving family. It's the love that changes them."

IAG, which charges a fee of about $17,000, is "very, very careful" about which children it selects and how it matches them with parents, says Clements, a lawyer who has adopted two Russian orphans herself.

So far, she says, the selection process and IAG's pre- and post-adoption classes for, and contact with, parents have paid off. She has seen no attachment problems.

Tepper argues that many agencies haven't heard about that many attachment cases because they never bother to survey their clients and because families don't call agencies when they encounter problems.

Instead, they call doctors like Dana Johnson in Minnesota.

Johnson, who has recently become a hot speaker on the foreign adoptions tour, has reviewed the medical records of hundreds of Russian orphans and has seen about 40 children.

He says he's already found signs of attachment disorder among Russian children, but he has no way to quantify or predict how many will develop problems.

Another person who is seeing problems pop up among the Russians is Linda Crumpecker, past president of

, a support group for about 350 families.

At first, Crumpecker says, she and most of the members of her support group didn't think their children would be affected.

So far, most have not been. But, she says, "those of us with school-age kids are finding that they have learning disabilities... . I could give you five names of families who say their kids are fantastic and five whose families are falling apart."

Tepper predicts that the history of Crumpecker's Washington, D.C., group will be repeated in Pittsburgh.

She says she has "offered herself on a platter" to the local Russian group, offering to speak to them herself or get local specialists like Dr. Solomon to address them free. She's given Three Rivers Adoption Council a list of local doctors and therapists.

She's been rebuffed and it obviously annoys her a great deal.

"No one made me the expert," Tepper says, "but I talk to experts every day and they tell me the same things."

They may tell her she's too radical or that she should be nicer, she says. ''But so far, I haven't heard anyone say to me, 'You're dead wrong.' "

One day this winter, Drue arrived home from school wearing a Duquesne Incline T-shirt and looking like any other smallish 5-year-old.

Curious and fearlessly friendly, but not too talkative, he leaned his body casually against a visitor whom he'd never seen before and pointed to a baby picture of himself in the photo album.

Tepper says Drue is no longer indiscriminately affectionate, which is one common sign of attachment disorder. But he is still too friendly. "He won't talk to strangers in the mall, but he would say hi to an ax murderer in his house," she says.

Drue's learned the alphabet, learned to count and knows his own phone number. But he can't understand idiomatic language. To Drue, Tepper says with a laugh, " 'Keep your eye on the ball' means the ball goes in your eye socket."

Tepper recently was relieved to learn that Drue has no permanent brain damage, which many Romanian orphans have.

He has therapies several days a week to deal with his four main problems:

sensory integration dysfunction, attachment disorder, central auditory processing disorder and visual perception disorder.

All were caused because he had no primary caregiver as an infant, Tepper says. "You learn to manipulate your senses from one parent. He just failed to learn, so those brain systems failed to develop."

It will be a long time before Tepper knows how Drue will turn out.

"I have about a gazillion articles saying these people end up with social and emotional problems in adulthood. It certainly isn't happy reading."

But, "When I'm through with this, I will burn all this stuff. My primary interest is Drue. What benefits him, benefits others."

Despite her trying adoption experience, Tepper would never tell anyone not to adopt children from Eastern Europe's orphanages. All she says is, "If you're going to do it, know what you're in for."

And, needless to say, Ti Tepper the Average Mom has no regrets whatsoever about adopting her beloved Drue. "The regret I have is that I didn't know then what I know now."

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Caption:

PHOTO: Bill Wade/Post-Gazette: Therapist Theresa Kollar, left, and Ti Tepper, right, turn therapy time into playtime for Drue, who suffers attachment disorder, believed to be caused by serious sensory deprivation in his earliest months in a Romanian orphanage.

PHOTO: John Beale/Post-Gazette: (For two photos) Rev. Susan Luttner with her adopted Russian daughters Alena and Mary, foreground.