Living with HIV: From the Kids

August 17, 2017 August 2017 Feature - Infectious, HIV, HIV Q and A, Infectious 1 Comments

As we see more and more HIV+ children become available for international adoption, we thought that it would be beneficial to hear first hand experience on parenting this need. So we asked prospective adoptive parents what they really wanted to know about having a child with HIV; then posed those questions to both adoptive parents and their HIV+ children.

This second post in a three-part series focuses on the questions most frequently asked by APs and the kids’ answers.

Part Two: From the Kids

The paperwork is done. The travel is done. The jet lag is finally over. The new normal is setting in.

What is it really like living with a kid who is HIV positive?

Kids living with HIV can teach us so much. Let’s see what they have to say.

1. What is HIV?

HIV is like a germ in my body. It doesn’t make me sick because I take medicine. (age 9)

A virus (age 10)

AIDS (if left untreated HIV can progress to AIDS) (age 14)

It’s why I take medicine (age 5)

A virus (age 10)

It’s a disease in my blood (age 10)

It is when you are sick in your immune system (age 17)

It’s not a big deal as people make it (age 19)

HIV is….. can you tell me? HIV is letters (age 4)

2. What do you wish people knew about HIV?

I wish people knew I am a normal kid-like that people weren’t scared so we didn’t have to keep it a secret (age 9)

That a lot of people have it (age 10)

My medicine makes me strong and healthy (age 5)

How to cure it (age 10)

We take meds every day and that’s ok (age 10)

It is not spread through hugging or kissing or touching or eating (age 17)

It’s not a big deal as people make it (age 19)

You have to take some blood (translation: you have to have blood drawn regularly) (age 4)

3. What is the hardest part about having HIV?

The hardest part is sleepovers. I have to go later than the other kids so I can take my pills, and I have to come home early too. I don’t like people knowing I take pills (age 9)

Blood draws (age 10)

Taking medicine everyday (age 14)

I don’t like getting shots and when they take my blood (age 5)

That other people may not want to play with me and leave me out (age 10)

It lasts forever (age 10)

If you tell someone you have to explain and tell them not to tell others (age 17)

Telling friends or your partner (age 19)

Staying still when they take your blood (age 4)

4. How long have you known you have HIV? How did your parents tell you? Could they have done any of the HIV talks better? If so, how?

The orphanage told me when I was 7 (age 10)

I just know (age 5)

Since I was 5 years old (age 14)

I have known since I was 5. My family had a counselor at the hospital explain it to me. I wish they would have talked to be about it more themselves (age 17)

I have known that I have HIV since I was 9 years old (age 19)

5. If you could tell the whole world one thing about HIV what would you say?

I would tell them it’s ok and not to be scared (age 9)

Please learn more about it (age 10)

The marines fight bad guys just like my medicine fights bad guys in my blood (age 5)

That you can’t catch it by hugging or playing or high fiving (age 10)

I want to tell people who have HIV to have to take their meds everyday not to get sick (age 10)

Do not be afraid of it. It is not as scary as you think (age 17)

Don’t be afraid of it (age 19)

The blood will be nothing special for me (age 4)

Sure sounds like they are just regular, normal kids who have to deal with a chronic medical problem. They are worried about sleepovers, blood draws, and the need for secrecy. They want everyone to be educated about HIV.

They do not want to be feared.

Additional resource: A Positive Superhero: Growing Up with HIV by Desiree Thompson

– guest post by two mamas who are parenting children who are HIV+

One response to “Living with HIV: From the Kids”

  1. Linda says:

    I want to know, as the parent of a 12 year old, what is it like sitting in class for the HIV/AIDS education? Our state mandates the training. What do you older kids think?

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