Severe mental and behavioral problems are among the issues caregivers have encountered with some children. The mothers of many of these children abused drugs while they were pregnant, and experts are not sure how much parental drug abuse affected child development. Some children did not receive the best prenatal care available at the time or were diagnosed with HIV late and did not receive the intense care they needed right away. As children have grown older, experts have found that some of them suffer from attention-deficit disorder, depression and various learning disabilities.
In addition, some children are behind in their schooling because early in their lives, survival, not necessarily education, was their first priority.
"Early on, for parents and foster parents, it wasn't so much 'what do you want to be when you grow up?' because it was too scary [to think about] at that time," said Dr. Warren Ng, director of the Special Needs Clinic at Columbia Presbyterian Hospital in New York.
Besides being HIV-positive, some teenagers must deal with frustration over their own learning disorders or knowledge that they're not as intellectually advanced as their classmates. And some teenagers who live at home with their biological families may also have to help their HIV-positive parent struggle with their own illness. The burden can be too much for any teenager to bear.
"These kids can be so angry. They hold a lot inside of them," said Luella Purse, a former volunteer coordinator at ICC who has helped mentor children born HIV-positive for seven years. "Often they take on the family responsibilities — the parents' responsibilities — because their parents are having trouble dealing with their own problems. So when someone confronts them [at school], they get angry and act out, cursing the teachers out and blaming everyone around them. And the thing is they know they're angry, and they don't know why."
Purse recalls one 14-year-old boy who could only read at a first-grade level and how he would be sent to his school principal's office for fighting. She also remembers how one 8-year-old boy could not even tie his shoes and make change at a grocery store. Purse believes New York's public school systems are not addressing these children's deficiencies and is trying to establish a learning center geared towards their special needs.
"We're hoping to enable children to feel like they have a support center while they're developing their skills and [we're hoping] to give them self-confidence," Purse said. "Unfortunately, we're not talking about sending them to the best colleges. We're talking about getting these kids to learn how to read at the 8th grade level because with some of these kids, learning to read at the basic level represents such a tremendous hurdle."
"But reading is only one aspect of it. They need life skills," Purse continued. "They need to know how to go out into the world and interact with people. They need to be able to go to the grocery store and make change. Sure, we've saved their lives and that's great. But if we don't show them how to live, then what have we really done?"