"With some of the youths that we've had, we've found that those who have been bounced around in foster care have really had a hard time keeping up with the medicine simply because they have not had the role models, someone who could help them integrate and show them that the illness is not necessarily bad," said Chris Waisman, a social worker at the Adolescent Aids Program. "They will frequently feel that since the illness is bad, then I am bad. A typical way to deal with these bad feelings is to deny them."
Support groups of peers — HIV-positive adolescents — like the ones provided by Montefiore's Adolescent Aids Program, as well as a strong support group of family, friends and care providers, are vital to teens with HIV, especially if they are hesitant to disclose their HIV status to others.
"I think with many of the kids who have grown up with the disease come from families who remember when there was a lot of overt discrimination and a stigma," said Futterman. "With many young people, so few are willing to share their status publicly. There is still a tremendous amount of fear about being isolated from their friends being cut off. In relationships, we've found that a lot of teens are afraid of disclosing their HIV to their partners. They fear they won't be loved, that their partner will break uo with them. In reality, these relationships can be very brief, and if they are monogamous, it's serial monogamy."
With support groups, teens can at least openly discuss issues that only others similar in age and cirmstances would understand. It enables them to cope with living with their illness.
"It's very, very important for them to have age appropriate peers with which to share common issues," said Waisman. "That can be a steppingstone to adjustment and living with HIV."
In its most recent statistics, the Centers for Disease Control and Prevention says there are 8,207 children under the age of 13 diagnosed with HIV/AIDS who have mothers who were also HIV-positive or were at risk. However, CDC officials say they do not have an exact number on how many of these children have reached, or are approaching their teens because some cases are not reported. In addition, some children were not diagnosed with the disease right away.
In an article for February's American Journal of Public Health, Dr. Stephen Nicholas, director of pediatrics at Harlem Hospital Center and a co-founder of ICC, called the especially troubled population of children born HIV-positive growing into teenagers a "new crop of 'boarder babies'," some of whom are being rejected by adoptive parents who were surprised at how long they have lived and were not prepared to deal with their various problems. Nicholas warned that there were no ideal settings to address all these childrens needs and that some are destined to end up in the juvenile justice system.
As these children grow into teenagers and teenagers become adults, one challenge careproviders will face is helping them get a sense of their future. Part of that involves helping teenagers find out what they want out of their relationships, what they want out of their lives and what goals are realistic.