Excerpt: Supporting Children with HIV-Positive Parents

Author’s note: The following excerpt is from Chapter Six, “Silent Panic: the Impact of HIV/AIDS on Children of Gay Parents” in my book, Families Like Mine. I share it today in observance of World AIDS Day. [Read excerpts one and three.]

 Supporting Children with HIV-Positive Parents

Children with HIV-positive parents need support for the issues that are unique to them. They have their own set of worries and stresses related to the status of their parents, and it helps when parents validate the children’s feelings. “[My father] was very understanding of my process,” says Jenny, “really respecting and honoring that I was going through some things as well, that it wasn’t just him.”

Close-up photo of text from the book.
Families Like Mine, p. 156.

Among the issues is that of having to live with the unknowns of a disease – not knowing how to plan for the future. Children with HIV-positive parents also struggle with disclosure about their parents’ status. They need to know if it is safe to tell friends, and they also need help finding ways to talk about the subject with their friends. As with coming out, peer reactions are a source of anxiety. When Gina told her boyfriend that her father had AIDS, she says that “he was so in shock and scared that he dumped me and would not even see me. It was quite difficult at the time, because I was scared that I would lose more people [who] loved me like I lost my boyfriend.”

Depending on a child’s knowledge of how a parent contracted the virus, the child could be dealing with anger toward the parent in addition to sadness. Perhaps the child was told (or assumed) a parent was being monogamous when he really was not. Or maybe the anger is toward a father’s partner who was having unprotected sex outside of the partnership.

These feeling are even more overwhelming if children with married parents learn that a parent has contracted the disease from a spouse who has been closeted. Daniel remembers finding out that his mother was HIV-positive, and knowing that it was his father who had passed on the virus to her.

“I wasn’t fully aware of exactly how he kept his homosexual activities from my mom,” Daniel remembers, “yet the idea of there being hidden agendas in his social life was appalling and disgusting…I was a part of his social agenda as his son, and my mother as his wife. I felt we deserved better than being misled by him just so he could get off. And as a result, my mother was HIV-positive; that disturbed me to no end.”

Children should not have to sort through this kind of information on their own. Private counselors need to be not just HIV-savvy, but also meet the needs and style of the child. Children must be reassured that the person they are going to talk to is not homophobic. Melanie, 29, had a terrible experience when she thought she was going to someone she could count on for support while her father was dying. “My mom took me to the pastor at our church,” explains Melanie, “He informed me that God used AIDS as a punishment for gay people and that I should be okay with it because it was God’s will. Needless to say, I am not religious now.”

Parents need to explore resources on behalf of their children, and let them know that it is not a sign of weakness or family betrayal to seek support outside of their family. Age-appropriate books and pamphlets about HIV can also be helpful – anything that reflects their experience can help decrease the isolation.

As parents become so sick they cannot care for themselves, teens and young adult children often play active roles in the caretaking. When Alysia’s father told her he was sick, they agreed that she would graduate early from college in New York City, and return to San Francisco to care for him. After graduation, Alysia felt torn between moving in order to be with her father and staying in New York, where she was settling into a new life she had created for herself – and was just beginning to enjoy. Her father wrote to tell her: “New York will still be there in a year. I might not be.”

“AIDS was an abstract concept when I was living my life in New York,” Alysia recalls,   “but my dad was living with it everyday. Not until I moved in with him and we met with doctors who were talking about his final stages of life did it hit me that he really was going to die.”

Being a caretaker for a dying loved one is both physically and emotionally draining. Alysia joined a support group of caregivers in which she was only one of two women, and easily the youngest. The group was welcoming to her, but her unique experience of caring for a parent set her apart:

A lot of the non-parents in LGBT communities have friends or lovers who have suffered from AIDS. Having a parent with AIDS is more complicated. This is the person who was supposed to care for me and now I’m caring for him. I didn’t choose this situation. I was born into it. I can’t break up with this person. I can’t drift and let our friendship fade out. This is my parent and mixed up with the illness and the dying is the complicated parent-child drama.

Resources at AIDS organizations are already stretched thin, but these service providers must understand how support for sons and daughters should be specific to their needs. “Typical AIDS support groups are not set up to deal with kids at all,” says Stefan. “They can be alienating instead of helpful.”

A question for readers: Have you found a resource or service for HIV/AIDS that is known to competently serve sons and daughters of parents with HIV? If so, please share it with us in the comment form below. Your email address will not be shared or sold for any reason.

Excerpted from Families Like Mine: Children of Gay Parents Tell It Like It Is by Abigail Garner. (HarperCollins, 2004)

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