So when do we tell the children?
(In Four Sections)

Section One

The WHDA has long believed that young people should be given information on HD.  This session will explore the sometimes contentious issue of when such information should be provided to children.  The stance of the WHDA on this subject is not always in unison with the thinking of some similar organisations around the world.  But more and more countries are coming round to the same views as our Association.  Our Camps for young people from HD families have been copied in other countries; and the book Huntington’s and Me - A Guide for Young People which we published in 2000, has been bought widely by associations overseas.   It has also been translated into Danish and parts are on the Internet.

The principles that the WHDA believe in are

§          Each family must make their own decisions regarding when their young should know about HD and who should provide this information.  Each family is different and each child is different and has different needs.

§          It is important to always tell the truth to the young.  Lying can only cause distress, confusion and possibly anger at a later stage.

§          The earlier you tell children, the easier it is for them to accept it.

§          Information must always be at the level that the child can understand and sufficient to answer the question.  There is no need to give more information than asked for.

§          Information given to the young must always be accurate and not misleading.

§          Those providing information must also provide follow up.  Consideration must be given to “what the young do with the information, once they have it”.  In other words, the appropriate support must be made available and this again must be initiated by the family.

These principles have been applied by the WHDA in the running of camps for young people for the past nine years.

 Camp participants come from families where at least some information on HD has been provided.  The Camp provides further information, an opportunity for further questions and discussion, mutual support and coping strategies.  From the feed back that we have received we know that the camps have been successful.  However, the issue of when information on HD is given to young people continues to be a matter of debate.

 We are very fortunate today to have a panel of experienced people who will share their views with us on “When do we tell the children”.

 Dorothy Tortell

Section Two

 My experience in working with children has been about dealing with serious illness in their family and helping them to understand some of the changes that they are facing. In order for us to discuss when children should be told, we perhaps could look at why they should be told.

©Why Should Children Be Told

 © Children have an inherent right to know about anything that affects the family. Not telling them not only breaks the trust but in my experience, it is the family secrets that cause children damage, rather than the truth. Children will know that something is wrong. If we don’t tell them they will imagine things for themselves. (The three year old and the four year old brother and sister whose mother was dying from cancer. Parents had asked several months earlier how and what to tell them, but had found it too hard and had in fact not told them anything. When she arrived at the hospice and it was clear that she would die that day, the father asked for help to tell the children. His belief was that the children had no knowledge that their mother was very ill. When they were asked what they thought was happening, they shuffled a bit. “ You tell, no you tell”, then the little girl said, “he thinks that mum is dying today and so do I”. If people are talking on the phone, if the family are communicating at all if the sick person is receiving visitors and they are talking, symptoms, medications, diagnoses etc. then the children will hear things.

 © We cannot protect children from the hard parts of life, but we can love and support them as they deal with difficult issues. Protecting them may prevent them from developing the skills necessary to deal with the hard stuff and take away their ability to cope with any of life’s complications. There is a wonderful book for young people called “Huntington’s and Me”, by Alison Gray, which I am sure that you will have all seen and I would like to read you a lovely quote from Jamie that I have taken from the book.

“Life is such a changing thing. Some days there will be rain and others there will be none. Some days will be hot and some will be cold. Huntington’s is like life. It changes day by day. Some days will be good and some days will be bad, but it is life. Most people have something to deal with – cancer, the flu. Some time in a person’s life they will have to deal with something hard. I believe we are put here for a purpose. To learn. Whether we are rich or poor, well or sick, we all have a lesson to learn in life and HD is what we were put here for. All I can say is live life to the max, play hard, learn a lot, and enjoy every moment and take what you can from it.”

 © Children may well hear information from others. If you tell them what they need to know, then you have control over that information and can ensure that what they are told is relevant and correct. Others can be responsible for giving information, which is uninformed and may not in fact be what you want your children to hear.

 © You and your children can be a comfort to each other. You won’t need to feel secretive and isolated in your own family. Trying to keep secrets within a family causes confusion and puts added stress on everyone involved. The secret keepers, because they have to watch what they say, and the people without the knowledge, because they will know that something is wrong even if they don’t know what it is.

 © Children deal with the truth amazingly well. Even really hard truths will relieve the anxiety of too much uncertainty. We cannot take away their sadness, but if we give them the right information and share our own feelings, we can offer them support in their sadness.

 ©Who Should Tell

  © It might be best if the person with Huntington’s could, if they feel able. It’s fine if you show sadness or cry. It may even be helpful for you to be able to explore your own feelings at this time. You alone will know best if it’s okay for you to be the one to tell them.

 ©Otherwise, another family member who feels able to

 © A close family friend that the children know and trust

 © Your Doctor or social worker. Likewise they could be there to support you and to help you to answer questions, if you decide to tell them yourself.

 © So When Do We Tell the Children?

 © As soon after diagnosis is the best time to tell. That way the children will be part of ongoing discussions and developments as they occur. Explain any treatment, any changes that you know you will be facing, and how you feel. Be willing to answer questions and make time to talk. Remember that children don’t design their questions to make us crazy, they often need to ask the same question many times and in different ways. This enables them to process the information and to try and make sense of it at their level of understanding.

 © How Should We Tell the Children?

 © You may need to do it on an individual basis at first depending on age and stage developmental needs, but later it may be that you talk as a family.  Remember that you don’t need to give children all of the information at one time and that you don’t need to give them all of the information. By that I mean you don’t have to take them down a path that they are not ready to travel, for example details that they may not understand, money worries or test results that you don’t yet have. As long as they are always told the truth, that is what is important.

 © It can be helpful to write down what you would like the children to know, this can be useful in ensuring that they receive the same information each time they ask and you don’t have to try and remember exactly what you have said. Make sure that what you say is in a language that the children will understand. The earlier referred to book, “Huntington’s and Me”, by Alison Gray, is a wonderful resource for children and parents alike. Children can refer to it as questions arise and learn from other young people dealing with similar circumstances. Knowing that there are others in the same situation is very comforting for children, in fact for all of us.

 © Encourage questions and be ready to repeat the answers over and over again, as time goes by.

 ©Always check what the child has heard you say, it may well be quite different to what you think you have said.

 © Talk about feelings as well as facts. Sometimes when we are dealing with hard stuff we can feel overwhelmed by different emotions, fear, sadness, anger, helplessness, or even guilt, this is very normal and it can be helpful to express what we feel. The child’s emotions may well be quite different but it will help to normalise their experience.

 © Don’t make promises that you can’t keep. 

 © Don’t be afraid to say that you don’t know.

 © Don’t push children to talk. If the lines of communication are always open, then they will choose a right time to talk. Watch for that, it can be easy to miss and it may not be the right time for you. If that happens, explain to the child that you are not able to give them the attention that you want to give (and the reason why) but tell them a definite time when you will.

 © Remember to tell the children who you want them to share information with. If you are not ready for the world to know your personal information, be sure to make that clear to the child, however it is very helpful for them to have someone outside the family that they can talk to. Help them to identify who that person might be.

 And finally, for support people who are walking this journey with a child, “Keep walking and talking and listen patiently. Walk always with your eyes and ears open to the child. Look and listen and respect that on conscious and unconscious levels the child is very involved in the process. Be loving. Be supportive. Be there. The child will lead you.” Ken Doka

 Lynne Ewart, Grief Educator, The Wilson Funeral Home, Wellington

Section Three

“Come here for a moment please” said Mum.
I stopped watching TV and turned around to see my parents both sitting in our open plan dining room, both at our old 2^nd hand table.

‘Oh damm’, I thought, ‘She knows I snuck those chocolate biscuits when she was in the shower’.
But no, it can’t be, dad looks intense as well.

 I sit opposite mum.  Dad is on my right, at the head of the table.  I’m wearing my dark blue dressing gown.  I am 11 years old and I am being told about Huntington’s for the first time.

 What follows is a very basic outline of what HD is, then that my mum is going to be tested to see if she has it.  Dad asks a few questions of her.

 I’m feeling…. different.  I can’t explain any better than that.  I just feel different.  I’m thinking I should be devastated.  I feel like I should be making this moment more tragic than it feels.  But what I choose to do (and feel) right, is just to sit quietly and be a sponge – suck up all the knowledge I can from this moment.  A question comes up:

Mum, is that why Aunty Lyn doesn’t hug me properly?’
“Yes” was her answer.

The next day at school I think I want to talk about it to my close friend Sharon, but I’m a little confused as to my feelings.  But I make my decision to talk to her.  She shows concern, it consoles me but to her it is a brief discussion.  For me, I’m hoping to really talk about it.   I make a half-hearted attempt to continue the conversation, but she has no idea what I’m feeling and neither do I really.

I’m 20 now.  Not much has changed with the talking situation.  People I have chosen to talk to about it seem to be on a different level from me.  They listen for a brief time when I would prefer to talk for a while.  So in the years following that night, it is no surprise that the HD Youth Camps were very beneficial to me.  It filled the gap.   I needed to discuss my feelings.  I needed to openly discuss HD with people who understood.   These camps offered me this.  My Mum told me there was a camp being planned and asked if I would be interested.  My main concern was not that I would be meeting new people in the same situation but that the activities included abseiling.  My biggest fear at the time!!  I decided to go.

 With my arrival I was so shocked.  I looked around and said ‘I thought I was the only one in New Zealand’.  From that moment, my feeling of needing to talk to someone and feeling so isolated just left.  I cried once at the Camp – quite a big outburst at a lady speaking in the group.  I was learning about the effects of HD, and at the same time thinking of my Mum.  It became a little too much and I burst out.  I was angry at receiving this information but that lasted only a moment.  After the cry, I felt lighter.  It felt like so much just left me then a few tears.  I was now a very full sponge.  I had learnt so much.  I had made so many good friends.  We stayed in contact and I went back many years, receiving and giving support.

 I am happy with the way I learnt of HD.

 So when do we tell the children?

 I thought my mind was made up.  I thought I knew exactly what I would say today but then I happened to discuss this speech with my cousin who changed my opinion a little.  My original feeling towards this question was “the younger the better”.  My cousin said she wasn’t too sure about that.  She has a son of 6 years.  Lately he has been fretting over the idea that their family is going to die in a massive flood or earthquake.  Ideas he had picked up from school.  It made me think.   So you tell a young child about HD – they may react like this to it – begin to worry and fret.

 My opinion changed. 

 Let me put it like this.

 If my girlfriend gave birth tomorrow, I would discuss this process with her. 

That above all things we are honest with our child.

 Say, if asked about my mother:

 “Why does Nana move and smile different?”

The kind of inquisitive question I’d expect from a 5 year old.

 I would answer:

‘Nana is a little unwell, but she isn’t too sick that she has to stay in bed all day.  She is well enough to be happy and smile and to love you heaps!  You could help her to feel better by giving her heaps of hugs and kisses though’.

 If our child continued asking questions I would keep answering honestly but gently.  If our child stopped – then that’s enough for today.

 If I was about to go through predictive testing I would say I was going to the Doctors today to see if I was going to be a little unwell like Nana.

 See, I believe no one knows children better than their caregivers – they know what the child can handle.  I believe it requires ‘subtle honesty’.

 If my test result was positive I would like my girlfriend and I to sit with our child with a social worker/psychologist to discuss it, depending on when we felt our child could understand correctly the information.  If they were young I would probably say:

 ‘Some people catch a cold, some people get very sore tummies, some people get HD but it’s normally just grown-ups’.  If they were older I’d be more specific.

 I would slowly release more information over a period.   I would not wait until the teenage years.   I believe teenagers have too much going on then to add HD to their list.

 I would definitely, without any doubt, inform my child of the HD Youth Camp.

 I gained so much:  Friendship     Understanding         Support          Information         Even a stronger bond with my mother.

 I lost nothing.

It was the right age for me to learn.

 If I was told today it would turn my world upside down.   It would not have been fair.

 I have included HD into my life’s plan now.

I deserve the right to do that.

 So when do we tell the children

My answer:  When they ask.

JD

Section Four

Almost 10 years ago today, when I was 22 and just out of university, I went to visit my parents in the Canary Islands for a two week holiday.

 Six months earlier they had sold their house, bought a sailing boat and set off on a round the world journey of an unspecified duration.  This was the first time I’d seen them since they’d left. 

 Although lovely to see them and have time in the sun on a yacht, it was actually quite a stressful holiday.

 I suppose any 22 year old would find it a strain spending a concentrated period of time with their parents in the confines of a 40 foot boat….   And it’s probably not any easier for the parents!

 But this wasn’t just stressful because of normal parent/daughter differences.  This was stressful because the behaviour of my mum was not as I remembered it and I found it confusing, annoying and embarrassing.  She was slurring her words, walking as if the ground was coming up to meet her in ways she couldn’t predict, and irrational. 

 Being the typical selfish 22 year old, I didn’t think to worry about her or even really to wonder why she was behaving like that.   I just wished she’d act normal in front of my boyfriend – what would he think? 

 The behaviour of my dad was stressful too.  He was tense and angry with everyone.

 Shortly after I had got back to England I was in the small flat my parents had left all their belongings in when they set sail, rifling through the filing cabinet looking for information about insurance.  But instead of looking under the “Is” I found myself looking under the “Hs” by mistake, and came across a whole folder on something called Huntington’s Disease.

 Why would we have information on something I’d never heard of? 

 I started reading through it and as I did so some key words jumped off the page at me.

 ·           Involuntary movements

·           Difficulty with speech

·           Mood changes

The penny began to drop. 

 As I continued reading, other words jumped out:

 ·           Degenerative

·           Devastating

·           Hereditary

·           Dominant gene

 By this time, of course, I had put two and two together and realised not only that my mother was sick… irreversibly so.  But that this had serious implications for me and my two sisters.

 I was, all at once, enormously sad for my mother, terrified for myself, and angry that I had had to find out this, surely the most significant piece of information for me and my family, alone…. With no one to answer my questions.

 I called my older sister in London – I really needed to talk to someone.  She wasn’t at home, so I sat by myself again feeling numb, until, as if she somehow knew I needed her, my sister walked through the door.  She had driven two hours down from London to pick something up that she had left at the flat.

 I told her what I had just discovered, and she confirmed that she had also recently found out, also by herself.  I felt we should tell our younger sister immediately, but my older sister reasoned that this wasn’t a good time for her to find out … she was still at university and about to go to live in France for a year.  Even though I hated the fact that this was all a big secret, I thought she was probably right. 

 That Christmas my two sisters went to stay on the boat with my parents, who were by this time in the Caribbean.  I didn’t join them having recently spent all my savings getting to South America where I had gone to live and work for a year.  On the last day of their Christmas holiday, just as they were getting ready to go to the airport, my dad took my sisters aside and dropped the bombshell:  Our family GP had recently been out to visit them and had confirmed what my dad already suspected …. That my mother was showing all the symptoms of Huntington’s.  He had arranged for a blood test to be flown to the UK for testing, which had confirmed that she did indeed carry the gene.

 My older sister already suspected that this was the case, of course, but it was news to my younger one.  So, at this time when the three of us finally knew about Huntington’s, we were all living in separate corners of the globe – unable to explore our fears with the only other people who could really understand – each other.  The skeleton was out of the cupboard, but it was still scary!

 We each coped in different ways, and perhaps even to different degrees.  I tend to share my feelings fairly readily, so although I carried the burden around in silence for a while, I gradually began to confide in more and more friends and talk more and more freely about it.  At one stage I sought out a one-off counselling session, to learn more about the condition and to find out about testing options. 

 But I did (and still do, I suppose) feel sad that we never talked about it as a family.  My parents continued to live and travel on their boat until very recently.  So whenever we were all together it seemed so important to be relaxed, have fun, keep everybody happy, because it was such an infrequent occurrence and always for a short space of time.  On the occasions in which my sisters and I talked about it together it was almost always in the context of concern for our parents. 

 In fact we never did really discuss our fears together until just last year – nine years after finding out.  Over the past year, now that my parents are back in the UK and on account of various other happenings, we’ve finally begun to share our fears with each other.  It’s a huge relief.

 But even now we haven’t really talked about it properly with my mum.  She has always been the most stoical of people, always there for each of us, that she’s never seemed to want to let us see her fears and sadness.  And so we’ve never pushed her to.

 When asking me if I’d make this presentation, Dorothy suggested that I might like to firstly describe how I found out about Huntington’s, and then talk a little bit about what I thought to be the implications of this.

 In the context of today’s discussion, I guess what she meant was the implications of having found out as an adult. 

 I should mention at this stage that we were actually told as children – once.  A few weeks after my grandfather had died (when we were about 8, 10 and 12) I remember my father coming into the living room where we were watching TV, standing awkwardly in the doorway, and saying “James (that was our GP) thinks I should tell you how grandfather died. They’ve discovered he had a disease which is what made him act strangely.  It’s a disease that can be passed down through families, so it means that there’s a chance that mum might get it”.

 That was it…. it was a droplet of information in a sea of ignorance and had no impact whatsoever.  We never talked about it again, and none of us now remembers how we felt when we were told or why we didn’t ask more questions at the time.  In fact we each quickly forgot it such that, even when we each saw the symptoms in my mum, we didn’t link it with what we’d been told over a decade before.

 Would it have been better to have been told as a child (at least told properly – in a way that meant that I really knew and understood what it meant) rather than as a young adult? It’s actually difficult to hypothesise about this – I only know how it was, and can’t presume to know how it would have been if things had been handled differently.

 One thing I’m sure of is that I’m glad I didn’t learn as a teenager.  I went through all the usual adolescent angst aged 17 and 18, and I think it was better to find out at 22, when I had more resources to cope and good friends to confide in, than then.

 On the other hand, the down side of finding out as adults was that we each had to deal with the news on our own, essentially.  If we’d found out as children we might have been able to explore our fears in a “safe” environment, altogether, instead of having to take the risk of telling someone from outside the family, whose reaction couldn’t be predicted, each time we felt the need to get it off our chest. 

 But then again…. Perhaps it would have been no different – families are often actually the last people we turn to in all sorts of situations that make us feel vulnerable.  The fact that this is a deeply personal family thing is no different – on the contrary – it is arguably far more difficult to talk to the family about than more neutral things.

 The one thing I do want to say just before I finish is that I don’t blame my parents for keeping us in the dark (at least not any more).  I realise now that they were as much victims of silence as we were.   They didn’t talk with each other or with anyone else about Huntington’s.  And I know now that, even though my dad had noticed symptoms in my mum years before we each did, he felt disloyal to talk to us about it when he wasn’t talking about it with her.  So rather than feel anger, which I admit I used to, I now just feel deeply sad for them.  .

 And I know I’d like things to be different for our children.  I want them to grow up knowing all about Huntington’s, and knowing that if they want to talk to us about their fears, anger, sadness or whatever they can do. And that if they don’t want to talk to us, there are others they can talk to.  I also want them to grow up knowing that my husband and I talk about it with each other (something my parents quite clearly didn’t do) and that we love each other, and that we’ve discussed what we’ll do if I do get it.