- The Washington Times - Tuesday, March 27, 2001

Laura Bos says she will never forget the day her world was shattered. The Arlington mother recently had brought her newborn, Christopher, home from the hospital. She was thrilled and exhausted, in pain from a difficult birth, but happy.

After a few weeks, she began to feel the low hum of postpartum depression, she says, "but that was nothing compared to what I felt when I got the phone call from Christopher's pediatrician." Routine metabolic screenings on the baby, the doctor told her, had yielded some startling results. Ms. Bos heard the words "urgent … more tests … thyroid … mental retardation."

"I was hysterical," she says. She quickly dialed her husband, Greg Filipos, at his office.

"That was a real bad phone call to get at work," says Mr. Filipos, a commercial real-estate broker. "My jaw dropped open."

At that moment, Christopher's parents didn't know the half of it. They were about to join an exclusive club of involuntary members.

"More than 6 million children ages 3 to 21 received special-education services during the 1998-99 school year, according to the U.S. Department of Education's most recent figures," says Suzanne Ripley, director of the National Information Center for Children and Youth With Disabilities. The information and referral center, a private nonprofit organization, receives funding from the Education Department.

The disabilities of these children range widely, from mental retardation to autism to hearing impairment.

Their families face difficulties that families of typically developing children only can imagine. These parents must serve as advocates and intermediaries for their children, navigating the maze of health care services and support while wrestling with sometimes unrelenting feelings of guilt and grief. The keys to empowerment and sanity many say, center on early intervention, peer support and a solid knowledge of specific needs and services.

'Absolutely shell-shocked'

After receiving the initial bad news from Christopher's pediatrician on that April day, Ms. Bos and Mr. Filipos rushed their baby to George Washington University Hospital. There he was tested and prescribed medication for hypothyroidism, which is deficient activity of the thyroid gland.

When they got home, Ms. Bos says, tears rolling from her clear blue eyes, "Greg and I just went upstairs and laid on the bed with Christopher in between us. We were absolutely shell-shocked."

When treated with medication, most children with hypothyroidism can grow up to lead normal, healthy lives, Ms. Bos says. She and her husband, however, soon learned that Christopher's thyroid condition was just the beginning of his problems.

That was eight years ago. Today, Christopher is a charming, happy first-grader with a wide smile. He suffers from multiple disabilities that affect his brain, speech, vision, fine motor skills, gross motor skills and balance, Ms. Bos says.

"Christopher acts and looks different than other kids," she says.

He fights with his 3-year-old sister, Elana, over the same toys. It took him seven years to run for the first time. He rarely is invited to birthday parties.

"He's nearly 8, and he's been invited to only two parties of his school friends," says his mother, a communications professional at the National Safe Kids Campaign. "As time goes on, it gets easier to deal with and harder to deal with at the same time, but the pain never goes away."

Parents of special-needs children usually go through a long-term grieving process, Mr. Filipos says. "We know we don't have it the worst, and we're not looking for sympathy," he says. "We're looking for understanding and compassion."

Asking for help

When Christopher was about 9 months old, his parents were referred to Parent Infant Education (PIE), Arlington County's early-intervention program. Nearly every county in the United States offers early-intervention services to children from birth to age 3, PIE coordinator Margaret Jones says. PIE served 202 children in fiscal 2000.

"The learning that goes on [from birth to age 3] is amazing," Ms. Jones says. "It's critical through early intervention to help children with motor development and language and to support the parent-child relationship.

Once a child is accepted within a program, the next step is to plan services.

"We sit down with the family and therapists and talk about the plan," Ms. Jones says. "This includes the family's daily routines and activities."

These services are free, but therapy usually comes at a price on an income-based sliding scale. It can range as high as $93 an hour at PIE, for example.

After Christopher's initial evaluations and plans were completed, Ms. Bos says, the family embarked on the never-ending journey of therapy. For Christopher, that means speech, occupational and physical therapy.

"It is so physically and emotionally draining," Ms. Bos says. "You're always wondering, 'Am I doing enough?' "

She adds: "The only things you have are your doctors and your therapists and other parents who have gone through it or are going through it."

Dr. Merle McPherson agrees. He is the director of the Division of Services for Children With Special Health Needs, which is within the Department of Health and Human Services.

"Our experience says one of the greatest supports to new families are other families that have been through it," Dr. McPherson says. "And have a good general pediatrician you can trust. The family-professional partnership is something we really stress."

Through PIE, Ms. Bos was hooked up with a local support group for parents of children with special needs. Arlington's group is called Parent to Parent; it offers telephone and group support and a speakers program.

"We help parents become representatives for their children," says Julie Katz, one of Parent to Parent's two coordinators. Ms. Katz's young son has been diagnosed with developmental delays.

"Parents often hesitate to call us because they believe the group might be a place where people go to feel sorry for themselves or cry about what went wrong in their lives," she says. "But Parent to Parent is about developing a positive attitude about the challenges ahead."

The value seems pretty basic to Ms. Bos, who joins the loose group of eight or 10 parents bimonthly to sip coffee at the Arlington Fresh Fields grocery store.

"You talk about everything there," she says. "Your situation is typical in this group. A lot of the focus is on helping you and your family cope."

Ms. Bos met Texas transplant and former lobbyist Jana Sansbury at a Parent to Parent meeting last year. Like Ms. Bos and Mr. Filipos, Ms. Sansbury and her journalist husband, Tim, had become unwitting members of the special-needs club after the birth of their son, Will.

In January 1998, the Sansburys had gone to a suburban Virginia teaching hospital like any other couple about to have a baby. Their experience unexpectedly took a bad turn in the delivery room, says Ms. Sansbury, settling into a chair in the large family room in her home in Cincinnati, where the family recently relocated.

"Will's heart rate began to drop," she says. "They pulled him out with forceps, and then immediately there were a lot of people in the room. Tim heard one nurse whisper to another, 'Were they expecting anything?' "

Ms. Sansbury only glimpsed her baby before he was whisked away. Then she was tended and wheeled to her hospital room. A short time later, she says, she awoke to a knock on the door.

"It was the neonatologist. She came into my room and pulled a chair up to my bed. She said, 'I've just seen your baby.' Pause. 'He's very cute.' Pause. 'But there are some abnormalities.' "

Ms. Sansbury says the doctor mentioned the word "syndrome" in her monologue.

"One of my first thoughts was, 'I don't want to be a mother of a child with special needs. I don't want to be in that club.' Inside you are just crumpling. It's like a mudslide.

"I hated the doctor for the way she said it and what she said. She basically delivered the news and left. I just sat in my bed and watched the seconds tick by on the clock."

When Will was 3 weeks old, doctors made a diagnosis. He has a chromosomal rearrangement called Trisomy 9p, which means he has extra genetic material on the ninth chromosome. The manifestations are low muscle tone, cognitive impairment and a variety of physical problems. He is experiencing significant delays in his motor development.

Will's pediatrician referred the family to PIE just after Will's birth, and Ms. Sansbury took her son for his evaluation when the baby was 3 months old. She calls the program "a great introduction to the special-needs world."

The most encouraging aspect, Ms. Sansbury says, was her son's therapists. He received physical, occupational and speech therapy in his home each week for the first several years of life.

"They were always so positive about his strengths and genuinely enthusiastic when he accomplished something new. I found that I really needed to surround myself with people who looked at Will in terms of what he could do, not what he couldn't," she says.

Ms. Sansbury attended her first Parent to Parent meeting when Will was about 1 year old.

"It was a godsend for me," she remembers. "Especially when you are a new mother of a child with special needs, it is easy to become immersed in your grief. Trying to help others takes your focus off your own problems."

Chicago author Judith Loseff Lavin underscores the value of reaching out to others. The mother of a child born with a cleft lip and palate, Ms. Lavin wrote the recently published book "Special Kids Need Special Parents."

She says many parents do not realize that they have become isolated.

"The whole area of special needs is very fragmented," she says. "You're running back and forth to the hospital and visiting therapists. How much time do you have to search out groups and people?"

She says, however: "The parents' journeys are the same. They should be together so they can help each other and see they're not alone."

Ms. Sansbury agrees. "Nowhere else could I go and know that I was talking to people who understood. And I have found that in the special-needs world, there is always someone whose situation is worse than yours, so it has really given me a sense of perspective."

That perspective is grounded today in Will. At 3, he is a fair-skinned, pink-cheeked blond with a toothy grin and a sweet, engaging manner. He obviously adores his parents and 6-year-old sister, Hallie. He loves toys with lights and music and is quick to offer them to visitors.

When he is not attending a special-education preschool where he receives weekly therapies, Will spends his time exploring his home, bugging Hallie and getting into things like other toddlers.

His parents hope he might walk within the next two years.

"But speech is another matter," Ms. Sansbury says. Trisomy 9 and 9p children typically have a very difficult time with spoken language, Will's parents have learned, so they plan to help their son discover alternate ways to communicate.

"We don't know what Will will be like five, 10 or 15 years from now or what problems he will have. The future is sometimes too much to think about," Ms. Sansbury says. "But I look at him every day, and I see a happy, curious, funny, full-of-life child who is learning about his world just like any other kid. I'm glad to be his mom, and I will see to it that he gets everything he needs."

Advocates and lobbyists

Many parents of children with special needs learn early on that it can be a challenge to get their children everything they need. The best weapon, they say, is knowledge.

Staying fully informed is the top priority of another Northern Virginia mother, who agreed to speak for this story only if her identity was withheld.

"I'm working very, very hard on my son's program, and I want to maintain good relationships with everyone involved," she explains.

Although her child is in the public school system, this mother says she believes her son's best interests could be compromised if she is openly critical of special-needs services.

She and her husband are the parents of a preschooler diagnosed with autism.

"It is devastating," she says. "It is like the child that [my son] should have been and the child that I thought I had no longer exists."

This mother says her son seemed to be developing typically until he was about 1 year old. When she and her husband began to notice some delays, they sought an evaluation from the early-intervention program. The evaluation showed that their son suffers from sensory problems officially called "sensory integration dysfunction."

"I thought that was a diagnosis," the mother says. "It was only through outside reading that I found out that was not the real problem."

This mother points out that she and her husband are well-educated people capable of conducting research and understanding complex information.

"I really wonder about people who aren't very educated," she says. "How do they make it to the next step?"

She says she believes her county's early-intervention program failed to play a proactive role in her son's care.

"When directly asked to help with a problem, they did help," she says. "You just had to know what to ask for. Do not expect a bureaucracy to provide you with what you need."

Finally, this mother echoes the sentiments of so many other parents of children with special needs:

"No one is happy to be part of this club. … [W]e're doing the best that we can with it. We just have to deal with life as it comes."

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