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Young People For young people under the age of 35 to share experiences, information and ideas

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Old 03-07-14, 12:56 PM   #1
Little Star
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Join Date: Jul 2014
Posts: 3
Default I am new and need opinions

I am new to this and am looking for a little insite, my husband has 2 young boys and their mum (his ex wife) has HD. She is in the middle stages but is still looking after the boys by herself with help from her Mum (her Mum is also caring for her brother who is in the later stages of HD) meaning that wherever the boys go they are seeing this on a daily basis. My husband and I live over 3 hours away from them and see them twice a month however we are worried about the effects of this on the eldest who is 10. (He is receiving counselling and there are lots of people looking out for him).

Can anyone tell me what life was like as a child living with a parent who has HD. Obviously this disease affects people differently but I would like to hear from anyone who grew up in this situation so I can try and understand what he is going through.

Thank you!
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Old 04-07-14, 09:54 AM   #2
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: I am new and need opinions

Quote:
Originally Posted by Little Star View Post
I am new to this and am looking for a little insite, my husband has 2 young boys and their mum (his ex wife) has HD. She is in the middle stages but is still looking after the boys by herself with help from her Mum (her Mum is also caring for her brother who is in the later stages of HD) meaning that wherever the boys go they are seeing this on a daily basis. My husband and I live over 3 hours away from them and see them twice a month however we are worried about the effects of this on the eldest who is 10. (He is receiving counselling and there are lots of people looking out for him).

Can anyone tell me what life was like as a child living with a parent who has HD. Obviously this disease affects people differently but I would like to hear from anyone who grew up in this situation so I can try and understand what he is going through.

Thank you!
Hi Littlestar, welcome to the message board. Although I am never pleased to see another "new member".

Whils I have no direct experience of living with HD as a child as it is in my husband,s family, I did not want to ignore your post.

I can understand your concerns about the boys seeing the effects of this horrid disease on a daily basis but sadly for them HD will be always be a fact of life for them as it is their mother who suffers from it.

Providing they are receiving the correct support, as you say the eldest is receiving counselling and lots of people looking out for him. Is anyone from the HDA Youth Association involved with them? I understand there is lots that can be done to help children in these circumstances

Good Luck
Toosh
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Old 04-07-14, 05:13 PM   #3
dennisw
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Join Date: May 2007
Location: South Cumbria
Posts: 847
Default Re: I am new and need opinions

Hi Little Star,
Again welcome and hope we can help.
The HDYO web site is another source of information for you and your step sons. It gives experiences of both parents and children. Google HDYO.
No doubt HD puts pressure on children but research has shown that children best cope with HD when parents are open about it, but they are still going to have all the other ups and downs of growing up.
As Toosh said the HDA. Has a dedicated Youth Worker, Adam Chow so feel free to talk to him, details on the Contacts page of the main web site.
Dennis
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Old 04-07-14, 09:49 PM   #4
jc
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Join Date: Aug 2011
Location: Worcestershire
Posts: 22
Default Re: I am new and need opinions

Hi
So sorry you find yourself here but hope you'll find it helpful. I have two children age 7 and 9 with a Dad (my husband) who is in middle stages of HD. They're resilient, strong, mature and remarkable and they have developed something very special from all the sh.. they're dealing with. Yes I know it's unbelievably cruel but with strength and guidance from family, teachers, friends and other agencies we live day to day, week to week and get on.
There are some things they don't know and don't need to know yet. But as a general rule I'm open, honest and up front with them. I answer questions that come up truthfully as I know that if they feel they're being lied to or fobbed off they'll know instantly and then not trust me. We're in this together! There are some good books that have helped i.e. how to talk to children about HD.
From the start of this whole thing (which was out of the blue because there is no family history) we've all lived with the understanding that the only way we'll get through is 'information' and 'communication'.
xxx
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Old 08-07-14, 02:43 PM   #5
Little Star
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Join Date: Jul 2014
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Default Re: I am new and need opinions

Quote:
Originally Posted by jc View Post
Hi
So sorry you find yourself here but hope you'll find it helpful. I have two children age 7 and 9 with a Dad (my husband) who is in middle stages of HD. They're resilient, strong, mature and remarkable and they have developed something very special from all the sh.. they're dealing with. Yes I know it's unbelievably cruel but with strength and guidance from family, teachers, friends and other agencies we live day to day, week to week and get on.
There are some things they don't know and don't need to know yet. But as a general rule I'm open, honest and up front with them. I answer questions that come up truthfully as I know that if they feel they're being lied to or fobbed off they'll know instantly and then not trust me. We're in this together! There are some good books that have helped i.e. how to talk to children about HD.
From the start of this whole thing (which was out of the blue because there is no family history) we've all lived with the understanding that the only way we'll get through is 'information' and 'communication'.
xxx
Hi JC,

Thank you for replying to my post, our situation is a little tricky as we are shut out completely and are not told anything. The only time we get to find things out is when the eldest brings it up in conversation, however some of the things he brings up we are not sure if they a tales or whether he has been told this by his mum/nan. Their Mum is into spiritual/holistic things and one thing that the eldest said that his mum has been given this special necklace that will cure her of this disease. This being one of many things that we have had to gently put him straight on.

Our hearts are breaking as we do not feel that she is capable of being responsible of looking after the boys by herself but our hands are tied. All we want is for the boys to grow up and have a normal childhood but with the way things are going the eldest will soon become more and more of her every day carer.

Social services have assessed the boys as being healthy and looked after (primarily because her mum has them 3 out of 7 days) but I don't believe she has been assess for her capabilities. Again we just have to sit back and watch the affect it has on them.

Little Star
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Old 08-07-14, 02:46 PM   #6
Little Star
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Join Date: Jul 2014
Posts: 3
Default Re: I am new and need opinions

Quote:
Originally Posted by toosh View Post
Hi Littlestar, welcome to the message board. Although I am never pleased to see another "new member".

Whils I have no direct experience of living with HD as a child as it is in my husband,s family, I did not want to ignore your post.

I can understand your concerns about the boys seeing the effects of this horrid disease on a daily basis but sadly for them HD will be always be a fact of life for them as it is their mother who suffers from it.

Providing they are receiving the correct support, as you say the eldest is receiving counselling and lots of people looking out for him. Is anyone from the HDA Youth Association involved with them? I understand there is lots that can be done to help children in these circumstances

Good Luck
Toosh
Hi Toosh,

Thank you for your reply, yes they have more help since we began having concerns and making a noise this end. They have a HCA and also the boys school are very supportive along with counselling that is due to start soon which is good.

Little Star
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Old 08-07-14, 10:14 PM   #7
jc
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Join Date: Aug 2011
Location: Worcestershire
Posts: 22
Default Re: I am new and need opinions

Quote:
Originally Posted by Little Star View Post
Hi JC,

Thank you for replying to my post, our situation is a little tricky as we are shut out completely and are not told anything. The only time we get to find things out is when the eldest brings it up in conversation, however some of the things he brings up we are not sure if they a tales or whether he has been told this by his mum/nan. Their Mum is into spiritual/holistic things and one thing that the eldest said that his mum has been given this special necklace that will cure her of this disease. This being one of many things that we have had to gently put him straight on.

Our hearts are breaking as we do not feel that she is capable of being responsible of looking after the boys by herself but our hands are tied. All we want is for the boys to grow up and have a normal childhood but with the way things are going the eldest will soon become more and more of her every day carer.

Social services have assessed the boys as being healthy and looked after (primarily because her mum has them 3 out of 7 days) but I don't believe she has been assess for her capabilities. Again we just have to sit back and watch the affect it has on them.

Little Star
That's so tricky - Here's me talking about dialogue and sharing information but you're stuck with the opposite it sounds like. Like it's been suggested you can only do your best to provide a safe, 'normal' haven and be there when they need you - increasingly in the future it sounds like you'll need to be. Take care xx
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Old 26-07-14, 10:24 AM   #8
BB
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Join Date: Jul 2014
Location: st neots
Posts: 104
Default Re: I am new and need opinions

Hi Little star and welcome, sorry you and your husband have to deal with this. I dont know how much my experience will help you but here it is. My mum was told she was showing signs of hd when she was 18 (yr she had me). But the blood test was not available. She finally had her blood test at 25. Anyways we did live with her to begin with but the week before my 11th birthday myself and my brothers went into care. We were moved because of neglect. Now thing is when i was going through counselling for the test, we discussed some of what we went through. SOme of it, like moods, temper etc, was typical hd signs, other stuff, that our parents put us through was pure neglect and nothing to do with hd. soo i dont really know how much i can give you. her mood swings were what i remember most they were unpleasant. Thing is hd sufferers can go through several different paths, syptoms can hit in very different orders. Some people get hit mentally first, whereas i am hit physically first.
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