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Huntington's Disease Youth Organization

Parents' experiences of talking to kids about HD

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

In this section you will find the experiences of parents who have talked to their children about Huntington’s disease. These experiences are here to provide real-life insight into talking to kids about Huntington’s disease from those that have been through it themselves. As well learning from other’s experiences in this section, you can also provide your own experience by filling in the form below. All content will be checked by HDYO before being added to the site and we request that you provide a name along with your location and your experiences.

Send us your experience of HD

Cheri

I would like to start by saying that every HD story is different and my experience with talking about Huntington’s to my children was a personal decision.

My husband Bob was diagnosed with HD on September 1, 2006. When we received the news that the results had come back positive - Bob was devastated. I had somewhat prepared myself for that outcome because it was the only disease that came up when I “googled” Bob’s symptoms. On our (endless) drive home that day - we decided there no NO WAY we were going to tell the children. Even if our new HD support worker, Corey, suggested we consider telling them.

At that time, I thought Corey was crazy. How could I sit down our 3 beautiful children… Katie at the time was 10, Erik was 8 ½ and Tyler was not quite 4…..how could I possibly have the strength to not only tell them that their Dad had a devastating disease and that they too could end up having the same disease. In my mind there was no other option but to keep it secret to protect them.

A month went by and the burden of our secret was taking its toll. We met with Dr. Hyson and Corey again. And…. Again…..Corey handed me the pamphlet and said he would even be there with us if we decided to tell the kids. But, I did still not believe that telling them was a good idea. I also thought Corey was “nuts” when he suggested that Bob and I come to the support group meetings. How could I open my heart to other families and their stories when I was so upset about ours? I was wrong about that too!!!

Another month goes by and I am struggling more than ever. Our happy, positive, fun loving family was changing. It was difficult not to look at the kids without wanting to cry. I knew they were sensing something was wrong - especially our Katie. So, I called Corey and I talked to the kids' teachers, our family and friends and we decided that this secret was killing us and it was time to tell the kids.

December 1, 2006 - 3 months after Bob’s diagnosis - we sat the kids down. Each of my 3 children have very different personalities and I knew I was going to get 3 different reactions. We started off by talking about the noticeable problems that their Dad had. We said that we found a doctor that was able to help him with his anger and it was a disease that was changing their Dad. We explained what Huntington’s was and that the disease had now made it difficult for him to work and drive. At that point, we lost Ty our 4 year old - he wanted to go play. I could tell Katie and Erik wanted to hear more, so we talked about their Dad’s symptoms and how the disease was to blame for all his changes and behaviour and that medication was going to help with that. I could see relief and hope in their eyes and so I decided to continue. It was now my big moment and I started to explain how HD is passed down from a parent to child.

During that conversation, I remained positive and told them that there were many doctors and researchers trying to find a cure and that there was no need to worry about themselves at this point. I could see the worry on their faces, so I quickly took a different direction. I told them about Corey and that they would be meeting him soon and that he was someone that would help us get through this and that we weren’t alone. I also told them that there was something we could do to help. We talked about fundraising and I could see them getting excited. They were coming up with all sorts of ideas to raise money. I really needed to leave this initial talk on a positive note.

I can’t describe the overwhelming relief we felt after telling the kids. We could finally breathe. The months and years that have followed have been filled with different questions and concerns. Each of our children are dealing with this in their own unique way. Katie now 14 needs information. She needs to know exactly what is going on and has always been wise beyond her years. So, I tend to talk to her differently than I do with Erik, who is now 13 and has always been my worrier. Ty, who is now 8 is just starting to talk more about HD and what might happen to him. We openly discuss HD and my kids know that they can come to me with any question or concern. There are no secrets and there is no need for them to keep their worries to themselves. They know there is a reason for their Dad’s behaviour and although it is difficult for them at times, they know they can hate the disease and not their Dad.

With our positive attitude, our open conversations, visits with Corey, fundraising and Katie’s speeches - I feel my children are better able to cope with this disease in our family. I have never regretted telling the kids about HD. It’s been 4 years now and I know I have 3 loving, considerate, caring kids that have the knowledge and support they need to cope with HD in our family. I would encourage any parent struggling with this decision to understand how children sense when something is wrong. In my opinion, this news should come to them in a loving and safe environment.

We continue to remain positive as a family and with the support we receive from Corey, our support group in London, our amazing family and friends, Bob’s participation in clinical trials and the HSC - I know we have the strength to handle this.

Michelle

My kids have always grown up with HD in their lives. My mum was symptomatic when I had my first son at 16. For a year, while she still lived at home, she helped me care for my son while I continued with my education, however it became very unsafe for her to be left alone with him and gradually as time went on it became more about me looking after my mum. My eldest son has grown up watching my mum deteriorate with HD and this has been very emotional and difficult for him, however he also has a really lovely bond with my mum because of the early years they spent together. I had 3 more children after my first son and unfortunately none of them got to know my mum before HD. Therefore HD has always been a big part of their lives.

We have been actively involved in the care of my mum and HD has always been a part of our day to day conversations. They visit my mum with me in the nursing home, we take her home on special occasions and they actively help me care for her when we see her. I can’t remember there ever being a “time” when I sat them down and discussed HD as a topic…HD is in our general conversations most days and I try to be as open as I can with them about all aspects of the disease.

I can remember things became hard for my kids when I began talking about HD being genetic, as my brothers were getting tested. They started asking lots of questions about whether I was going to get it, whether I wouldn’t be able to walk and talk like nanna etc. I would answer them honestly and say that there was a 50/50 chance I would but that symptoms wouldn’t be until I was much older. But as the years went by and my brothers received gene positive results, they would worry a lot more and ask a lot more questions. They would ask when I would get it, whether I would still be able to look after them, whether they would get it, how old would they be, could kids get it etc etc. Eventually I felt that they deserved to know if I carried the gene or not, so I decided to get tested. I included my kids actively in the process and spoke to them about the counselling process and told them when I was getting my blood taken. When I got my results I didn’t tell anyone my result, except my husband who was with me, until I had told my kids. I felt it was really important that they were as much a part of the process as my husband and I were. Fortunately I was able to tell them I didn’t carry the gene, which they were extremely relieved about and my results relieved them of their worries about whether they would get HD or not.

In reflection I think it certainly made the time easier for them to know what was going on through the testing process and to be given information and support. They knew why I was stressed leading up to the results, and they knew what it would mean if I received a positive result. I would reassure them a lot about the fact that if I did get a positive result that I would exercise, take supplements and be as healthy as I could to delay onset. I tried to take a positive approach with them about how I would live with HD if I got it.

My kids still worry a lot about my mum, my aunt (who passed away 2 years ago) my uncle (who has HD) and my brothers (who are all gene positive) and they worry about their nieces and nephews (who are at risk), but I find it helps my kids to talk about their worries and concerns. I have actively involved my kids in fundraising and they have helped and supported in our 3 benefit concerts, raising approximately $40,000. They would sell chocolates at school, tickets for the concert, sell raffle tickets and would bring all their friends along on the day. The Day In The Vines concert gave them a positive environment and space to talk openly about HD with their friends and family and have fun in the face of what is often a very stressful and sad disease.

I think for my kids this approach has worked well, it’s hard answering questions sometimes as its very difficult to face the future that my family faces, but it has really helped my kids get through the hard times to know they can always talk about HD, ask questions and access support. When I was creating www.ourhdspace.org I often consulted them around content, pictures and ideas for the webpage. I update them after conferences about the researcher being done and the fact there are lots of people working hard to find a cure. So like most kids they love to feel involved and that they are an important part of the process. I feel this has helped them to have empathy for my mum and a sense of humour to some of her behaviours… they enjoy her company when we see her…especially the fact they get to eat a whole tub of ice cream with her in the nursing home

Norma

Telling our son about HD

When my husband was diagnosed with HD, our son was 7 years old. Our lives were thrown into turmoil. We had other family members who would now learn they were at risk.

My husband was distraught and trying to come to terms with the news. We decided that we were going to be completely open and honest with our son because, although we understood the reason my husband’s father had not told his children they were at risk, finding out at 40 out of the blue was devastating.

We told our son in the same week of the diagnosis. The reason for this was that we knew he had picked up from our behaviour that something was wrong.

We explained that daddy was not well, and that he had a disease called HD and that there was not yet a cure for this disease. We also explained that the disease caused dad’s fidgety movements and affected his balance and that eventually he would have to stop working. He asked whether dad was going to die. We told him that dad’s health would slowly get worse and that the doctor had said people with HD normally live for 15-20 years after diagnosis but this varied. At this stage we told our son as much information as we felt was relevant but we told him that if he had any questions, not to be afraid to ask us at any time.

He was naturally upset at the news initially, but life in these early stages continued quite normally in his world and he was very helpful and understanding towards his dad.

Over a period of time, questions did follow and we always answered these honestly. He asked whether dad would end up in a wheelchair, after watching a TV programme where a man with HD was wheelchair bound. We explained that dad’s mobility would deteriorate but that grandma hadn’t needed one so we were not certain whether dad would, but he might.

He later asked whether he could get the disease and we explained that there was a 50/50 chance of him getting the disease. He asked how old dad had been when we got the disease and on learning he was 40 he said “Oh that’s OK that’s really old!”

We made the decision to be open with our son because my husband said that if had known what his mother had been suffering with he would have been more understanding and compassionate towards her.

There is never a good time to tell your children. It is our belief that delaying telling the children does not soften the blow and does not make the task any easier. Our personal family experience has shown that as soon as the whole family are given the facts, the children show amazing resilience and compassion. Finding out at a later stage they have been excluded from the knowledge of the disease causes a great deal of hurt and distress.

Zena

I was always worried about telling my children, wondering if I was doing the right thing by telling them and how they would react. Would they not love me anymore or would they see me as another person, or even as a mum to them. I always felt like I was keeping a massive secret from them. My biggest fear was always showing symptoms before I was ready to tell my children.

It all came out 4 years after I got my results. My oldest child had found the book I was given for children at the Genetic department. He asked me if I was worried about having HD.

I sat my eldest two down at the time and explained to them that I have been tested for Huntington’s disease and it’s a genetic brain disorder. I told them that people who get tested for it have a blood test and speak to people about being tested at the hospital.

I explained to them that I have nothing wrong with me at present and go to the hospital once a year to have some tests done, so they can tell me if I’m ok or showing any signs. I also told them that there is no cure at present but good research is being done to find a cure and people do charity work to help raise money to help fund for a cure.

My children reacted better than I expected, my daughter kept hugging me and asking me if I was ill and pretending I wasn’t. I said to her that I was fine and if I was ill she would probably notice. My son seemed ok about it all and didn’t really say much.

I hope telling them made a big impact as when I first found out about it at 12, I didn’t know anything about it or get told by my family. I just want them to have what I didn’t have, that is information suitable for their ages. We can all sit and talk openly about it now but we don’t talk about it in front of my youngest yet.

My youngest who is 7 doesn’t know about me being HD pos. He actually calls it the “HD CLUB”. But I know give or take 5 years he will know about it. My tip’s for advice is to tell the children when it feels right.

Bryan

It’s not telling the kids, it’s how you tell them, in what intensity and volume of information, constantly assuring them that they’re loved and let them be the kid(s) as long as possible.

I was not afraid at all to tell the children because I could not hide the truth from them that their mom was sick even though it wasn’t really showing physically. The truth in doses that each child could manage was likely the best method. There was no big announcement, if you make it a big deal that’s what it will be for them, but a gradual release of information as needed.

I don’t recall a specific time or family meeting. We told them when we knew for sure that there mom was gene positive. We didn’t scare them by trying to explain what the future would look like either. We did not hold back on information or exposure as their mom would attend holiday parties at the local nursing home. We tried to never show fear by talking about being positive and learning to live your life in the midst of bad times. When behavior issues looked ugly and caused a challenging home scene we didn’t pretend that mom and dad were mad and divorce……we talked that it was the disease causing the activity and we needed to love mom regardless. The truth was the only way as you cannot hide from it in the end. The children can feel trusted and involved in the family if they are involved early with as much information as they’re able to manage. The parent’s role is to support the kids and the caretaker parent must find their own support system.

The kids were accepting of the truth without knowing “truly” what they were getting into. We were always good about sticking together and managing the disease. It was difficult to separate the disease from the behavior when it’s your mom talking or yelling at you.

Telling them has resulted in them being better prepared as they face their future as “at risk” adults. They know what their future can be as the disease progresses…..that is it also the worse part. If it works they will also know that a strong and loving family system will be there to support them in the future.

Trust them, be honest with them and give them as much information as you believe they can handle and watch their reaction and behavior. Always let them know that they’re loved and it’s their behavior that you’re upset at or talking about. Get them involved in something positive like fundraising. Don’t make them the parents…..let them be the kids.

Fiona

We had talked about telling our children about their dad’s illness for a while but we wanted our eldest son to complete his GCSE’s before we gave them the news as we knew he had enough to cope without giving him extra worry and anxiety. We were also concerned about our daughter as she was 4 years younger and we thought that she would not understand. Their granddad had been diagnosed with HD after we had had the children and therefore we were quite ignorant of it ourselves. As the illness developed we saw the changes in him which were quite upsetting. Children being children, they just accepted granddad as he was and never questioned his movements or lack of conversation.

When my husband was diagnosed with the disease it was very traumatic. Even though we had been through the counselling process beforehand, hearing those words ‘your test is positive’ leaves you feeling confused, angry, upset and completely devastated. We made a conscious decision not to tell the children for a while. Every hospital visit we had we told the children it was to check his blood pressure or it was for a routine check-up because he had not been feeling very well. Eventually they started to question why we had so many visits to the hospital but we still managed to skirt around the truth. It was quite exhausting trying to not let them overhear any conversations regarding my husband’s illness, we felt bad not telling them but we thought we had their best interests at heart.

As time went by the children would notice and make comments on how my husband dropped things and how he did not stand still. One day my husband’s movements were quite exaggerated and he was on a short fuse at the time. We were having dinner and my husband was having trouble eating and the children made some sort of funny comment towards him and with that he shouted at them which left them feeling quite shocked and bewildered by his sudden outburst. Both of them were quite upset. I followed my husband out of the room and spoke to him quietly. I told him it was not his fault, nor the children and that I thought the time had come to tell them. He agreed. We called them into the living room and sat them down and proceeded to say that we had something to tell them. We could see the fear on their faces and they asked if we were going to get divorced. We said no but then went on to tell them about the HD which their dad had been diagnosed with and the effect it will have on him over a period of time. They were extremely upset but we let them ask questions and we answered them as truthfully as we could. My son’s immediate reaction was he wanted to be tested but I explained to him that he would have to wait until he was 18 years old. After some considerable time they both went to their rooms and we felt both upset and relieved at the same time. Although we felt that circumstances had perhaps forced us to tell them the news, we also knew in our hearts it was the right time.

Since telling them it has brought us closer together as a family unit. Both of them have been so supportive and have positive attitudes. My daughter has involved friends, teachers and family members in raising money for the HD Research and also for the wonderful support group at Southend. My son has also helped out with her fundraising. I know they worry about whether they have the gene but they are not so determined to have the test. They want to live their lives and they have told us that when the time comes when they are in a serious relationship and want children that will be the time to get tested.

They have been our rock over the last few years since they found and out and we are sure they will continue to give us their support and the courage to keep fighting. We are so very proud of them.

Tony

Back in 2007 we found that we had HD in the family. Prior to that it had, through a combination of old wives' tales and ignorance, been swept under the carpet so for our family it had dropped off the radar. Then it all came out… and the end result was that my Mum, who was 62 at the time, is in early stages HD; my sister and I were diagnosed as both carrying the gene and between us we have 3 children who are now directly at risk. I was 38, my sister 37; my daughter was 9, my sisters daughters 9 and 11. So what to tell the children? And how? And when? There aren’t any hard and fast rules, every situation is different, every person is different but we probably all go through the anxieties of guilt and worry.

I decided that my daughter should know at some point and sooner rather than later; I believe children can cope if told properly not have things hidden from them. I was worried about telling her, naturally. It’s an enormous burden for a young person to have, the knowledge of how they may die, the fact that they won’t be able to know for certain for many years before they can have a test. Was I being fair putting this burden on her? On the other hand, she was going to see her Nan start to deteriorate and I wasn’t going to lie to her about what was going on.

We introduced the subject gently. Mentioning things in conversation but not giving things names, not explaining but waiting for her to ask. Pointing out that Nan does this because she’s got a condition and sometimes she can’t help what she does. My daughter also had a Great-Grandfather who she’d seen die with Multiple Sclerosis, so we used him as an example, conversations like “yes, Nanny is a bit wobbly on her legs. You remember what Granddad was like?”.

When she was nearly 10 I told her about Huntington’s. Over several conversations I said that, yes, I might go the same way as Nan but that I thought the Doctors would come up with a cure before that time and that yes, she had a chance of getting it as well. I didn’t go into detail at that point, I let each bit sink in separately and let her come back and ask questions. I always answered honestly, never tried to hide anything but I only ever answered the question - I didn’t expand beyond that. She looked up a lot of things on the web, found out different things for herself but I always monitored what she was looking up - the web can provide overwhelming amounts of information at times and it can be very raw and inappropriate! She now knows most of the important stuff. She is watching her Nan progress through the disease, although she is still early stages; she has also met people with very advanced Huntingtons too and not been too phased by what she has seen.

Has this helped her? I believe so (but then I would say that, wouldn’t I!). She isn’t scared by the disease but understands what’s going on. But now she is 13, with all the teenage hormones kicking in and this just adds another layer to all the other teenage anxieties. So did I do the right thing? Yes, I believe so. I believe she would not have thanked me if I had tried to hide the truth from her; I believe she will be a better adjusted adult because I have trusted her to understand some very grown-up concepts whilst she is still young. And it gives her “ownership” of her own life if you like, giving her the information to decide what she wants to do in the future. It also means that Huntington’s Disease isn’t a taboo subject in our part of the family that can’t be discussed, it’s out in the open where it should be just like every other disease.