A week ago we told eleven year old Tom about the life-shortening aspect of Duchenne muscular dystrophy. This was a conversation we had been anticipating and dreading ever since he was diagnosed with DMD aged four.
It was on Saturday morning, after we had had a nice time looking at a book together, and before breakfast. Tom and I were sitting on the sofa. I said, 'There is some more you need to know about Duchenne, now that you are getting into the teenage years. Most people with Duchenne live to around thirty years old. But the scientists and doctors are working hard to find effective treatments, so people with Duchenne can in future live longer lives.' Pause, while he took this in. Then: 'It's important that you have accurate information, because other children might look up things about Duchenne and say things to you that may not be right. You can say to them, 'Most people live to thirty and scientists and doctors are working hard to find effective treatments, so people with Duchenne will be able to live long lives'.'
Tom said 'So most people with Duchenne live to thirty...' and I finished off '...and scientist and doctors are working hard to find effective treatments, so in future people with Duchenne will be able to live long lives.'
Tom then said 'You don't have to rub my feet when we're talking about Duchenne'. I realised that I had been mechanically massaging Tom's foot as we had been speaking. Then he said 'Can we have breakfast now?'
It was clear that Tom had taken in the basic message, but also clear that it was something he would absorb over time.
There were quite a few things we considered in the background to this conversation.
One was the principle: tell the truth, but be positive. What we told Tom is the most positive spin on the current situation. Thirty is to my knowledge the average life expectancy for people in the UK getting good standards of care. And there is a lot of research going on; the message is one of hope.
Another was the timing and who would tell him. It needed to be a quiet time, when Tom would be fresh, and when he would have some time after the conversation to take it in. Tom's dad and I decided that it would be one of us, not both, who had the initial conversation, to keep things low-key.
Another consideration was the fact that we had given Tom information about DMD over years preceding this, in a 'drip-feed' way, responding to his own questions and observations. He already knows about the things he has observed and he has asked questions about DNA and dystrophin. However, this conversation was different. It was different because it did not arise naturally from something he himself had observed (such as older boys using wheelchairs full time) and it was always - obviously - going to be outside our comfort zone as parents. How far it is outside Tom's comfort zone I don't know. I don't think being thirty - or dying - is something that he can envisage at the moment (though it will be as he gets older). He has met lots of scientists at the Action Duchenne conference and he is on a clinical trial, so the current work on effective treatments is within his existing experience.
It is very difficult to give this information to kids so young. What made us have the conversation now is that Tom is in contact with other children who can look up DMD on the web. We needed to tell him before he heard from other, possibly inaccurate or hurtful, sources. We are lucky in a way that we were able to wait until he was eleven. Tom's DMD-related information-processing difficulties mean that his literacy is still too limited for him to look up DMD himself; also he attends a special needs school where most of the other kids are unlikely to look it up either. But just this year his social horizons are expanding and he is additionally spending time with other children in mainstream settings.
A further consideration for us was the impact on the rest of the family. Before we had the conversation with Tom we had to think about how we as parents are handling these huge and difficult issues; what are our different attitudes, how can we communicate about them, how can we agree a way forward? What is the impact on our emotional health of dealing with the fallout of information? We didn't know how Tom would respond; would he be traumatised and how would we as parents cope with that and best support him? Clearly we need to keep listening and supporting Tom in whatever way is helpful to him as he absorbs the information. As Tom is an only child we didn't also have to deal with the possible impact on siblings. But grandparents and other people close to Tom will need to be in the picture about what he knows and about ways to support him. And these are of course huge issues for them to take on too.
Over the past year or so we have consulted the children's psychology service at our local hospital, who have given us a lot of help and support to handle these issues.
Another background consideration is having plenty of positive, affirming, self-esteem building things going on for Tom as well as this difficult information. To make sure good things are happening, things where Duchenne is not invited. Some examples: Tom has fun at an art club, at the moment he's loving mixing colours and experimenting with fabric dyes. He loves acting too, making up stories, putting on funny voices, being different characters, and hanging out with other kids who love all that stuff too. Recently we've got a dog; she's a wonderful friend and it's satisfying and good fun training her. We make photo albums of all these good things Tom does. We are upfront about his qualities as a people person, a creative person, and some one who enjoys getting out and about and finding out about the world.
It's a relief to have all the information about DMD in the open, and not feel that there is something we fear Tom finding out. But it was also traumatic to have the conversation. The afternoon of that Saturday we went to a party. I was in a bit of a daze. Looking around at those other people there I just wanted to shout 'This morning I told my son his condition is life-shortening, oh god, oh god, oh god'.
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