An article in Redbook magazine in 1999 quotes Sheila about the patients at the Special Needs Clinic:
Ryan, herself a mother of five, is a rock-solid presence. … “These are people whom the system considers expendable,” says Ryan. “They’ve been beaten down and traumatized, their families have been torn apart. And still they won’t give up. Their will to survive–not just in a physical sense but as human beings–is inspiring.”
Read on for a good overview of the clinic and the unique way it helps their patients:
The Forgotten Children
THEIR MOTHERS HAVE BEEN CLAIMED BY AIDS. THE SYSTEM HAS FORGOTTEN THEM. FINALLY, THERE’S A RAY OF HOPE FOR THE EPIDEMIC’S HIDDEN VICTIMS.
When Stephanie Pena was ten years old, she went to visit her mother in the intensive care ward of the hospital where she lay dying of AIDS. Immediately afterward, Stephanie sat down in the Special Needs Clinic at New York Presbyterian Hospital in Manhattan to make an orange Play-Doh sculpture: a figure lying in a bed, hooked up to tubes and machines, just as her mother had been. It was a child’s way of expressing impossible grief.
After her mother died, Stephanie went back to the Special Needs Clinic and announced that she wanted to write a speech. As clinic cofounder Jennifer E Havens, M.D., 42, took dictation at the computer, Stephanie composed the following:
“When I first found out my mother had HIV, I didn’t pay too much attention. I kind of knew what it meant, that it could kill her, but I didn’t think too much about it. But when my mother started getting sick and throwing up a lot and going to the hospital a lot, I became more worried. When my mother was really sick in the hospital, the people in my church told me not to worry, that God would make HIV go away, and I believed them. My sister told me that I couldn’t listen to this because it wasn’t true. When [my mother] was on all the machines to help her breathe, I was praying and praying in the hospital so she would get better. When I saw her on all those machines, I didn’t believe it was her. I thought that that could happen to other people but it couldn’t happen to my mother.
“The doctor came and said in front of the whole family that only a miracle would save her. My sister started crying a lot more, and I got more nervous. I knew there was something more wrong with my mother, but they wouldn’t tell me….
“On January 12, 1994, at 4:35 in the morning, my mother died from AIDS. When this happened, I got really mad. I wanted to smack my grandmother and all the people from church because they said she wouldn’t die….
“Every day I start missing my mother. When I go home from school, I want my mother to be hugging me. Sometimes when I wake up, I think my mother is sleeping next to me. Sometimes I get scared because I think I’m going to see her.
“When my mother was alive, she always wanted to tell other people to take care of themselves and be careful not to get HIV. That’s why I want to tell other people too.
“When I see shows on TV with teenagers who have a lot of boyfriends, I want to tell them to be careful. People think that children don’t have feelings…. Even when children are little, they know what’s going on. I remember everything that happened when I was three years old.”
A desperate need
Stephanie’s speech is a wake-up call. Although the urgency of the AIDS epidemic is fading in the public’s mind, it is increasingly becoming a woman’s illness–and a children’s tragedy. According to the Centers for Disease Control and Prevention in Atlanta, 22 percent of reported AIDS cases are female, and by the end of the next decade, HIV-infected women may well outnumber men. By the year 2000, an estimated 82,000 children nationwide are expected to have lost their mothers to the disease.
When Stephanie lost hers, the place where she found not just the resources to make her sculpture and write her speech, but also a staff ready to help her cope, was the Special Needs Clinic. Founded on a shoestring budget in 1992 by Havens and Claude Ann Mellins, Ph.D., 38, the clinic addresses the emotional and practical crises of families affected by HIV and AIDS. From almost the moment the clinic opened its doors, it was flooded with clients. “Our first referral from the hospital’s adult AIDS service was a woman who had died the day before–and she had 14 children! Believe me, they were happy to see us,” says Havens, a dynamic psychiatrist who bears more than a passing resemblance to the actress Tracey Ullman. “No one was really looking out for the children. If you’re a mother with AIDS, your benefits increase as you get sicker. You get rent supplements, disability, and homemaking and health services. But the minute you die, all of that stops–except that the kids are still there.”
The Special Needs Clinic (called that so parents and children won’t have to deal with the stigma of saying they’re going to an AIDS agency) currently serves some 250 families. All of them have had their lives disrupted in major ways by the disease, and about one fifth of the children are HIV-positive themselves, infected in the womb or through their mothers’ breast milk (sometimes long before their mothers were aware they had the virus). These children have to deal not only with their parents’ death, but also their own scary prognoses.
On a recent visit, an 11-year-old we’ll call Angela, who is HIV-positive, wanted someone to help her compose a list of questions to ask her pediatrician. Angela believed–wrongly, of course–that her doctor’s upbeat attitude meant she didn’t think Angela knew how serious her condition really was. Angela believed that if she asked her questions in just the right way, she could get her doctor to be more candid with her.
With the help of Sheila Ryan, 54, the clinic’s program director, she wrote, “I know that it is AIDS I have. How did I get this virus? Why do I have it and [my baby brother] doesn’t have it? Did my mother do something that made me get the virus and [him] not get it? Will the pills I am taking help me get better, better, better so that I do not have the virus at all? When I get married, I don’t want to be [taking] pills in front of my husband, because he will know what I have and be scared.”
It’s easy to understand why Angela felt comfortable enough to open up about her deepest fears. Ryan, herself a mother of five, is a rock-solid presence. And the clinic’s atmosphere is cheerful and welcoming, with children’s paintings and drawings, stuffed animals, picture books, toys, and games in view.
But what really makes the clinic unusual–unlike other agencies that work with AIDS orphans–is its whole-family approach, which coordinates mental health care with medical treatment elsewhere in the hospital, and sees families through the long, difficult, and constantly changing process of dealing with AIDS. “One-stop shopping,” Havens calls the clinic. “We get to know the parents while they’re still alive. We help them tell the kids about their illness; we’ll even tell the kids if the parents can’t do it themselves. We help them plan for who’s going to take care of the kids, and we’re there for the kids after the parents die.” The staff also gets involved with very practical problems: securing Medicaid, housing, and tutoring.
In all these efforts, Havens has strong partners in Ryan and codirector Mellins, an exceptionally warm and reassuring psychologist. Since the fledgling days of scrambling for funds, a series of grants has enabled the women to put together a team that includes psychologists, psychiatrists, social workers, learning specialists, and researchers.
But often, it’s the clinic’s willingness to help families deal with such difficulties as the electricity being turned off and the apartment being infested with rats that wins the trust of people who, says Ryan, “have had the system fail them in so many different ways, they’re not exactly eager to sit around and discuss their most intimate problems with a stranger.”
“So much has gone askew for these families,” says Mellins. “Their problems are so different and so many and so enormous. No one could do this alone.”
The children’s tears
In recent years, more effective antiviral drugs have helped AIDS patients live longer, so some of the clinic’s focus has shifted to helping families deal with chronic illness. But parents still die, and kids need help preparing for and dealing with loss.
Bereavement is extremely complicated for these children, many of whom are still angry with their parents for having done the things–taking drugs, becoming involved with HIV-infected partners–that resulted in their illness and death.
“You try to find something good, some happy memory for the kid to hold onto,” says Havens. “You try to make them see that whatever the parent did that made them sick–and the fact that the parent died–isn’t because they didn’t love their kids. And you try to stop the kids from blaming themselves.” Sometimes, she says, she and her colleagues are the only people who ever say to a kid, “It’s not your fault.”
“It’s difficult to mourn someone whom you’re also furious at,” says Mellins. “We try to help them see that you can be mad and sad at the same time. Or just mad.” With adolescents, who are frequently distrustful and depressed, the challenge is to help them talk about their loss. “Often, we help them write their autobiographies.”
With young children, says Mellins, therapy may involve art and play: “One little boy couldn’t express his feelings about his father’s death, but he drew a picture of a coffin and a little boy beside it. So I asked him, `What is that little boy feeling? What’s it like for that little boy?’
Some children express themselves by playing with dolls in a dollhouse. And one little girl put a note to her mother in a balloon, then let it go.”
Another child, forbidden by his grandmother to tell anyone that there were only three people at his mother’s funeral, put the truth in his drawing of a burial attended by three tiny figures.
A HOME FOR COMPASSION
At 12:30 on a Monday afternoon, the clinic’s staff–20 or so enthusiastic, attentive men and women representing a wide range of ages and racial backgrounds–gather to eat box lunches and hear a case presented. Good-natured groans go up all around as Mellins brings up an apparently unpopular subject: the approaching deadline for deciding which kids should go to the two summer camps (one for emotionally disturbed children, the other for HIV-positive kids) to which the clinic makes referrals.
The mood grows more sober as Warren Ng, M.D., 32, a gentle, softspoken child psychiatrist, describes the harrowing case of a 13-year-old boy referred to as Kevin, who not only suffers from AIDS but also another lifethreatening auto-immune disorder that complicates his medical treatment. Kevin has lived in four foster homes, has suffered bouts of intense anxiety, and has had recurring problems with bladder and bowel control. After a brief, relatively peaceful stay with his grandmother, Kevin was–over the objections of the Special Needs staff–returned to the care of his severely delusional mother, who beat him with a belt and scalded him in the shower. It was Kevin who took his barefoot mother by taxi to the hospital during one of her psychotic episodes.
Like many of the children at the clinic, Kevin’s concern for his mother is mixed with rage. “She gave me a sickness when she was out in the street doing bad things,” he has told Ryan. But he can’t tolerate any discussion about her impending death. “Kevin can’t hear you,” he’ll insist, sticking his fingers in his ears. “Kevin has gone home.” The smallest frustrations cause him to take off running, sometimes in the middle of the night. Kevin has been living in a temporary group home, but his time there is almost up.
The staff begins to brainstorm for solutions. Is there a foster home to take him? Could he go back to his grandmother? What is his medical prognosis?
To an observer, one of the astonishing things about this session is the staffers’ sympathy for Kevin’s mother. “When therapy is focused on just the child, you do get angry at the adults,” says Mellins, herself the mother of two children, ages five and two and a half. “But when you get the parent’s therapist talking about everything that happened to the parent, your empathy goes up.”
For each case, the clinic prepares a genogram–a sort of family tree that it uses to document trauma and hardship (HIV, substance abuse, violence) that has been passed down through generations. “The adults are almost all traumatized,” says Havens. “They may be acting out of a tremendous sense of shame.”
One of the clinic’s goals is not only to make life less stressful in the short term, but to stop the destructive cycle. “It’s important for these women to understand how they’ve internalized trauma,” Havens says. “If you can help a woman get back on her feet and she can do something different for her kids than she’s done all along, that’s very important. If she can apologize in a real way to her kids, that’s what the kids want. Apology, acknowledgment, and change. We have the potential,” she says, “to prevent kids from following in their parents’ footsteps.”
A RESOUNDING SUCCESS
Occasionally, the clinic’s victories are nothing less than spectacular. Stephanie Pena, the girl who, at 10, made the PlayDoh sculpture of her dying mother, is now 16 and studying drama at a high school for artistically gifted children. She cowrote and starred in a one-woman show about her mother’s death at the Nuyorican Poets Cafe in New York. Right now, she’s organizing a children’s AIDS walk to raise money for peer advocacy programs.
Stephanie’s courage and achievements make it clear why the clinic staff speak of their clients with such admiration and respect–and why more programs like this could make a real difference to the next generation. “These are people whom the system considers expendable,” says Ryan. “They’ve been beaten down and traumatized, their families have been torn apart. And still they won’t give up. Their will to survive–not just in a physical sense but as human beings–is inspiring.”
— From “The Forgotten Children”, by Francine Prose, Redbook, Vol. 193, No. 2 (July 1999), p. 96.