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Talking to the children

United Kingdom
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Hi all hope your all well, i have been adamant that telling the children is the right thing to do, i have read lots of different peoples experiences and ways of explaining but the words are still yet to come out why? when i feel so ready for them to know. My children have no experience with hd what so ever prob never heard of it, they do not see there father who is affected by this so i know there's no rush they are only 9 and 10. I am keen to find out other people's experience on how they told there children and how they reacted to the news and if anyone has any advice they can give me to educating to children about this.
Thank you

United Kingdom
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Young adults Forum support

Hi Michelle,

When you are thinking or about to tell the kids, what is it that stops you - what comes into your head?

Matt

United Kingdom
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Hi matt, Hope you have had a lovely easter

Many? some days i dont think of it until kids in bed, days i do think about it sometimes its not in the right places, other times one of them not happy so dont want to add or they are all happy and don't want to ruin it. I worry it will change them, affect there school, change the views on things knowing they might have this, they will worry and once them words come out there's no going back. I said some days i dont think about it til kids are in bed and i kinda like it.....life without it how it was before :) i know its not going away and when i do think about it i say i want the kids to know, feel like im just going round in circles with it writing this out now grrrr such a big mess lol . this is when i want to know if they even got it or not because i might not even need to tell them. sometimes just putting it to the back of my head seems easier.
Rant over lol thanks for listening x

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Hi Michelle,

I had a nice Easter thanks, plenty of chocolate.

It sounds like you are worrying about telling the kids quite a lot and how it will impact on them, would that be right?

Have you thought more about what exactly you will tell them for the first discussion?

Take care,
Matt

United Kingdom
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I am Matt very worried your right, as to what to say to them i thought i knew but have just started writing and i had to delete it all because actually i dont have a clue, i dont know what they are going to ask me to know what im going to say, ie how it affects them, if they dont ask do i tell them straight off, what is 'enough' information whether their asking the questions or not?
I've got my first sentence sorted but after that its all muddled, what if they say..... i will say..... but i cant say that.....the fact that they don't see their dad worries me they will ask more questions because they have no idea what it is or what it does.
It would be great if i could hear even just one story from someone in same position and how they deal with it.
Thank you for listening xxx

United Kingdom
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Young adults Forum support

Hi Michelle,

Perhaps you could look at firstly what you plan to say and then also try to guess what kind of questions you think the kids might ask you in response, so that you have some answers in your head when you go into the conversation.

I know we talked before about the first discussion on HD with the kids only needs to be a simple introduction to HD. So what you possibly want to tell the kids is that their biological father has been diagnosed with HD and this is what HD is - such as this:

It is a genetic condition that might cause people to have involuntary movements, people with HD tend to also think slower/take more time to process things and they can also experience behavioural changes too.

Just something simple like that. You're giving them plenty of information in a nice short explanation that is appropriate for their age.

Then perhaps think about what questions they might ask in response.

'Why are you telling us this?'
'Is dad going to die?'
'Will we get HD too?'

Think about what you will say in response to those kind of questions and try to remain truthful without disclosing too much at once. For example, if they do ask whether they are going to get HD too, say you don't know. It is the truth.

Get some responses in your head, understand clearly what you want to say and try not to worry. The worry tends to be worse than the actual event of telling the kids about HD for the first time.

Remember, whenever you talk about HD. Always end by letting the kids know that if they have any questions they can ask you anytime. So they know that channel is open to them.

You are doing really well with this Michelle. I'll try and get you some contact with other parents (might be difficult to get some in the exact same situation as yourself, but at least you can speak with them and learn some tips from those with personal experience). I'm always around too.

Take care,
Matt

United Kingdom
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Thank you Matt!
You make it sound so easy lol hearing from you always makes me feel stronger to tell them.
I will get there im sure its just trying to get the best possible moment i can and being 100% ready and i obviously aint there just yet. I always say it but thank you for being there, and pushing me along :)
Take care xxx

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You are welcome, Michelle. Keep taking these steps and you will get there.

Matt

United Kingdom
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Hi Michelle,
I was in the same position as you - I found out that there was HD in my family, I got tested and found that I am HD+. This was 5 years ago when my daughter was 9. Obviously that meant that she was "at risk" of HD and I felt that she needed to know at some point.

My mum was showing very early signs, so that was how I introduced the subject, by talking about my mum. Something along the lines of "have you noticed that Nanny is talking a bit funny recently?" then introducing the word 'Huntingtons'. After a while I'd mention it again but let her ask the questions with a little bit of nudging so she eventually asked if I was going to get it. And after a while she asked if she was going to get it. At every point I told her the truth, I never lied or covered up anything. Sometimes I only answered the question but didn't give any more information - "are you going to get it Dad?" - "yes, at some point" but not mention the risk to her. Then a while later she asked "am I going to get it?" and I told her the truth that it was 50/50. She was 10.

She's now 14 and says that the best thing I did was tell her about it. She says that she would hate to have been kept in the dark, to have had secrets hidden from her. She now knows everything there is, she's seen people with advanced HD but she also sees me taking part in all sorts of silly tests and research projects on the basis that one day soon there will be treatments... we are both glass-half-full people!

I feel honesty is the best policy with children. They sometimes have far more sense and maturity than we give them credit for and hiding things from them is just because WE are afraid of the truth, not them...

Australia
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Young adults

I would like to share my experience of being told about HD.

My dad was diagnosed when I was only 5, however a doctor suggested my parents not to tell me until I was older 15-16... My mum told me when I was about 14, there wasn't much to tell because I was old enough to figure out there was something not right with my dad... The new thing though was introducing sort of excuses for my dads anger and frustration which made me feel guilty for all the years I had just seen that as him... The other thing introduced was this 50/50 chance of having HD... My mum made out like it was not that bad and said that girls have less chance so me and my sister would be fine...

Over the years I have learned more bit by bit about HD..

I wish my mum told me earlier but I know it would have been tough for her so I'm not angry at her...

So I guess if your a parent I would suggest telling your kids as soon as HD becomes part of the family and be honest!

United Kingdom
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Hi thank you both for your experiences, things are a little different for me as my children do not have any contact with there affected father or other family members, so have no idea of what to relate to, after months of torture i finally plucked up the courage to tell the children about there father and a little information i read from the booklet i was given for children , my daughter age 9 says she's not interested right now not sure she really took what i said in :( i left the option for her to read the booklet if and when she likes, my son on the other hand wasnt interested straight off but went away and must of thought about it and decided to read the booklet himself (he told me after that he had read it) he has nothing to say just yet or any qeustions buts knows im here if he does. Im very worried he is putting on a brave face but not dealing with it too well he is quite an emotional boy as it is and im concerned that this will take its toll if he holds it all in.... X

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Thank you Fred and Alex for adding to this discussion. Nice posts.

Michelle, well done for making that first and often most difficult step! How are you feeling?

I think the most important thing to remember is what Alex touched upon: always be honest and open as a family about HD. Keep letting your kids know that they can ask you questions about HD whenever they want. If you feel that your son is bottling things up then there is no harm in asking him whether he is or not. See how he is handling things and then you can accommodate his needs if he has something concerning him.

Take care,
Matt.

United Kingdom
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Hey matt,
not quite sure how im feeling if im honest half glad i have started the ball rolling but half scared its all a bit too much. Without this site i would feel very alone right now, and often think i cant cope with this myself, my daughters behavior is becoming uncontrollably for me, and my son is really struggling at school with his social skills. He is easily upset bringing him to tears so the other children make fun of him :(. he says he is ok and he knows im there for him just not sure he telling the truth. x

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Hi Michelle,

I'm glad that you're finding the site useful. Don't forget that you deserve support in all this too Michelle, if you're feeling like you can't cope with certain things then there are people and organisations out there that will help you. You've done a difficult thing telling the kids about HD. When you say your daughter's behaviour is becoming uncontrollable, what do you mean?

Matt

United Kingdom
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Hi Matt, her attitude towards certain things stinks, the way she talks to her siblings and me is sometimes shocking, its not on a daily basis as when she is, im gonna say having a good day she is a lovely little girl, she can be very selfish and inconsiderate. She has started to hit me, throw things at me, im surprised we got doors left in our house through her slamming them, she just loses it to the point were its hard to get out of unless she leaves the house. i can cope with the temper tantrums even the slamming doors but hitting me is what i can't deal with and often just let her, then walk away as i dont know what else to do, i have discussed this with her school and they have said they will do some work with her and her brother to try and bring them closer without them knowing i have said anything to them, she dont like anyone knowing what she does as she knows its wrong but just dont know why she does it, since telling her about her dad things have been a little more settled and she seems to be thinking about what she's doing a bit more she will even apologise to her siblings which she hasnt done for a long time, not sure if its because of that or if the school have helped with that. she didnt want to know about her dad really and neither of them have mentioned it again as yet x

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Hi Michelle,

Is your daughter's behaviour a new development or has she always been temperamental in that way?

Whatever the case, I'm glad your daughter seems to be more accepting now that you've told her about her dad having HD. It may just be a coincidence, I guess time will tell. But it is still a positive step for her :)

Matt

United Kingdom
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hey matt, hope your well, i would say that she has always been one of them that knows what she wants or dont :) but her jekyll and hyde ways as i call it, i would say about 2 years with the lashing out at me being in the last 6 months. They are both yet to mention there dad or hd to me since telling them, how long do you recommend i leave it for before i mention it again to them, my daughter as i said didnt really pay no attention to what i was saying wasnt interested at all my son on the other hand didnt want to listen to me at the time but did later on that day read the booklet i was given for children and told me he had read it but had nothing to say.

Thank you
Michelle x

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Hey Michelle,

If the kids haven't brought HD up since then there is no reason to do so really. Perhaps if you have any further discussions about their dad you could let them know that they can always ask you questions if they have something on their mind and that it is better talk about things than to keep them inside. But there's no real need to push the issue with the kids. :)

Regarding your daughter's behaviour, have you spoke to anyone about it?

Matt

United Kingdom
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Hi Matt :)
I have spoken to genetic counsellor, teacher and head teacher, the school are aware of the situation and have suggested they both have some emotional literacy lessons, certainly for my son who is very sensitive at times which affects his social skills, the advice i have been given concerning my daughter is to ignore which is sometimes easier said then done :) praise for the good which is what i have always done also have a consequence for the bad again something that i have always done, my other 2 it works with and they know the boundries but for her she has the 'whatever' attitude and loses out more often then not, im not getting anywhere with that. As regards to the hd the genetic counsellor has said that if neither of them mention it again that i should, the likelihood of them mentioning their dad is very slim, they dont want to know.
Take care
Michelle x

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"As regards to the hd the genetic counsellor has said that if neither of them mention it again that i should, the likelihood of them mentioning their dad is very slim, they dont want to know."

Sure, I agree with the counsellor. That was what I meant when I said that you could bring it up with the kids on the occasions when you need or want to talk to them about their dad. So as not to bring it up specifically, but as part of a wider discussion about their dad and how he is doing.

Matt