TELLING KIDS

[apple]

Can someone give me clues on how you one call tell kids that they are positive? Any mothers who have ever been or are in my shoes? At what stage do you tell them? And how do you tell them that they should feel that its not the end of the world? I dread telling my two kids who are both positive (14 and 10) but I know they need to know.

They have in the past asked me numerous questions like why do we take medicine everyday? when will we stop? It breaks my heart but I know time is running out, especially for the teenager, i need to tell him so that he starts taking care of himself properly.

Sometimes...I wish I was dead!

[cjc]

Hello Apple. Sometimes I wish I was dead too, but am glad I am not. I wish I knew what to tell you, you face a very emotional situation.  I guess you just need to set them down and tell them.  I might be wrong, maybe someone who has been through this will respond. Best of luck with this .  Cristy( edited to fix a spelling error.)

[penguin]

hi apple

another forum member posted a similar question awhile ago - you might want to have a look here

another good source of info is the UK children's HIV association's guide to talking with children about their HIV status <---- this is a downloadable pdf

I think the most important thing here is to be honest, allow them to guide any discussions, and keep the information as simple and straightforward as possible.
You might also want to discuss this with, and possibly enlist the help of, their pediatrician/nurse specialist - I'm sure they will have experience of dealing with this issue before, and might be able to offer some tips or advice.

Kate
*edited to fix link

[Fky]

I used to go to support groups, and way back when, I was given a couple video tapes on how to talk to your kids about hiv/aids (it covered if you, the parent had it and/or the kids) Do you have someone YOU talk to? A case manager, therapist? See if they have any tapes, or books. Something that will make it a bit easier on you. I wish you the best!

[Andy Velez]

Dear All,

After some private conversation, Apple asked if I would move this thread over from Positive Women to here, where anyone who may want to can respond about her situation.

Cheers, 

[emeraldize]

Hello Apple

I talked to a mother last year who adopted four HIV positive children and they knew from the time they were quite young. And, each are very at ease, yes, at ease, with their status. They are teenagers now.

A person you might consider enlisting is their pediatrician with whom you might be able to share the role of informer/teacher. (edited to add: I see Kate suggested the same. If they have a Peds ID doc, all the better.)

Is either child on meds? If so, is it clear what the meds are for? If not, are their numbers good or is it likely one or both will need meds?

Personally, I would inform them separately, if possible. And, you might have to ask the older child to refrain from telling the younger child or speaking of it until you've had a chance to discuss it. 

As you've acknowledged, the 14-yr-old needs to know right away, not only for self-care reasons, but transmission prevention.

If I find any additional information, I will pass it along. I have a resource I can tap, she, too adopted several positive children.

Em

[Mouse]

I was infected when I was 14, and to be completely honest, even though it's difficult undoubtfully, it's become something I'm so used to and have adapted to in the last nearly 3 years that I don't find it haunting me very much. Part of me almost thinks that if by some odd fate I had to inevitably get it at some point in my life, I'm glad it was sooner rather than later. I just feel better at dealing with things right now. I can build my life now taking care of myself and doing the things I have to do in order to adapt things in my life around this accordingly. I have no false misconceptions about my health or my future or anything like that, and I'm mostly at peace with myself about these things. My parents (well, mostly my father) have also been completely on my side about my decisions from the start and respect my ability to know what is best for me (within reason, there have been times where I was just wrong about how I was feeling and they took over).

I don't want to to say that I've grown up quicker because of it, because I'm still incredibly immature in a lot of stereotypically teenager-ish ways, but I'm definitely capable of taking care of myself and making informed decisions about my health, and I think it's important for someone who is going to have to deal with something like this for their entire life to have the ability to depend upon themselves about these things and not someone else.


Teenagers might surprise you. We're ridiculously resilient.

[Jeffreyj]

I think what Mouse just said should make you feel better about telling them.

Mouse, You continue to amaze me. You really are an inspiration, and you probably are unaware of it. To hear a teenager like yourself deal with your HIV on an adult level I personally find amzing.

So apple, I would definately tell them sooner then  later if it were me. Start with the truth, rest should take care of itself. I would think the support of another person would help alot.

Be strong. You definately have a most difficult thing to do here. But I think you will feel better after it is done and out of the way.

I wish you the best!
Jeffrey

[keyite]

Mouse, You continue to amaze me. You really are an inspiration, and you probably are unaware of it. To hear a teenager like yourself deal with your HIV on an adult level I personally find amzing.

Hear, hear! This mouse makes your jaw drop again and again.

apple, I don't have children so I can only imagine being in your shoes. Here in the UK the BBC has shown a documentary series over the last couple of weeks about children with leukaemia, following them as they go through chemotherapy treatment. They have been spanning from 6 to 16 years old. All of the kids have been so incredibly brave in the face of the real possibility of death, and one child did die during the making of the programme. Very calm and level-headed they've been, even when their parents - understandably - have been all over the place. In a strange kind of way they've really taught me something about having HIV. Not that I take any pleasure in others being worse off than me, but it has somehow helped me to put my own worries and fears into perspective.

A bit of a diversion, I guess, but what I'm trying to say is that chances are they'll cope okay. Kids have a sixth sense when something is not quite right - hence all their questions. I suspect it will partly come as a relief for them when they are given the full picture. The suggestion to enlist professional help is a great one.

Good luck!

[zeb]

Hi Apple,

First of all I want to tell you that I know two poz moms with poz sons. And I feel lot of respect for them because they are so strong and so aware of how to raise their kids in a good way. So first lots of respect to you!

In the Netherlands the practise - which is also supported by HIV clinicians who treat children - is that around the age of 12 the kids learn about their status and what it means. With diplomacy the  whole truth is told. Also the current wisdom about their perspectives is told which actually is good. The Dutch pediatric HIV docs expect kids who have access to treatment care to finish college and start a family of their own.

That being said I know that these two mothers really find it difficult. Feelings of guilt play a major role. So I really can understand that is is so hard. I wish you the best and hope you and your two kids will do fine.

Greetings
Zeb

[Andy Velez]

Dear Apple,

If the support of your children's doctor can be enlisted that would be great. How are your son and daughter doing in general? What kind of expectations do you have, knowing them, about how they will react?

In general I would recommend that when you decide to talk with them, whether separately or apart, do it earlier in the day -- not at night. It will give them time to absorb the news and to ask questions if they want to. As with sex and other matters, when they ask a question just answer that question.

You'll have to decide, but I would say the differences between 10 and 14 are significant, so you may want to speak to them separately. Doing that will also allow you to focus completely on each of them, giving him/her your full attention.   

You don't have to deliver an encyclopedia to them verbally. Be as simple and direct as you can be in your responses. If they ask you something you don't know the answer to, say you don't know but that you'll find out or we'll find out together.

They may ask, "Am I going to die." HIV is a serious health problem. But with good medical care there's every reason to believe they'll have long and fulfilling lives. You can be supportive about this while remaining truthful.  Their meds are helping to keep them healthy. etc. They may worry about your health. Children want to know their parent(s) are going to be around for them.

Your honesty and confidence (even with your inner doubts and feelings) will help them in setting the tone for the discussion. They may have a lot of questions or only a few. Every once in a while they may have other questions. Again, just answer the question as simply and as honestly as you can.

Of course you are welcome to talk about it here as much as you like and find helpful. We're concerned and supportive of your dealing with this challenging situation.

 

[DanielMark]

Apple,

I opted not to have or adopt children, so I can't easily understand your angst about telling this to your kids. On the other hand, I can imagine how difficult this must be for you. So, I dug up this page of resource books (that can be ordered) which might be of interest to you in facing this challenge. Hope it's of some help.

"We understand parents often feel uncomfortable discussing HIV and sexual health with their children. MAP hopes these resources will be useful for parents and educators trying to broach difficult topics. We have a variety of materials that are appropriate for different ages and settings. These resoures also include materials developed to help families affected by HIV talk to their children about this disease."

http://www.mnaidsproject.org/learn/parteach.htm

Daniel

[apple]

Many thanks for the words of encouragement and advise. Both of them are doing fine. The girl started with a cd4 count of 6 in 2001 but is in the 1800s. The boy is around 600s. The only problem with the girl is facial wasting which is another matter and I have posted it under a different thread.

I feel that the girl will take it better than the boy since she has practically taken medicine since she was 5 years. She also remembers that before that, she used to be very sick but with the medicine, she is better and has stayed for almost two years without any major disease.

For the boy, i never knew that he was positive until when he was 10 years old, he developed mild shingles and I had him tested. Two years later, he started taking drugs. So both of them take drugs.

I agree that I should tell them separately. I might tell the son first and the girl later. I will see............. but thanks once again and will update you.

p/s thanks DanielMark for the link, will look it up!

[Denver Toad]

Apple,

It may help your children to know there's others in the same boat as they are. These folks have an amazing depth of spoken history. Many of which are young people. Give a look...

http://www.thepositiveproject.org/

[BT65]

This is a very touchy situation.  Is there a counselor involved anywhere in this? 

[apple]

Just to respond to Betytacy:

I am living in a country (Asia) where the doctors do not speak much English and HIV/AIDS is still heavily stigmatised. So there is no chance of being assisted by a paediatrician or counsellor.

[milker]

hi Apple,

I cannot help in your situation, but I can surely send you millions of HUGZ to you and your kids. I wish you the best!

{{{{{{{{{{{{{{{{{{{{{{apple&kids}}}}}}}}}}}}}}}}}}}}}}}}}

Milker.

[apple]

Thanks Milker! I felt the hug and passed it on to the kids!