Jane: Concerns us. Concerns me especially about what will happen to [name] when we die. It’s quite morbid to think about but it does, it does really concern me. It does worry me, because even though he is little now, you still think about it, because with my other child, I know that I am teaching her now and she is going to be able to take care of herself, and she is going to be able to work and have children and get married and things like that. But he is not going to have those options open and you know, we already know that he is going to need some great deal of care throughout his life. So it does sort of worry me because I don’t want him to end up in an institution. I want him to be happy and feel like he can live independently when we do pass away. That worries me.

Dan: Hm [laughs]. I feel confident and I am convinced that he will be able to take care of himself to some extent, at least to manage, because the values and quality of life available to him now, I reckon, that will help. I mean he may not be able to help himself totally compared to our daughter, but he will be able to do it to a sufficient extent and I imagine having my daughter around, she would also help him because they are very close. They are almost like twins I would say, you know, and she always asks about him, even when he is asleep in bed, when she is up and he is in bed, she always says, ‘oh I want to go and see [name]’ and she will get up and go to his room and have a look at him and make sure he is tucked in and all that stuff. So I am confident that even if we are not around she is going to be able to help in some way or other. And like I said the, the values we are teaching him now, will help [name] with characteristic for the future. So I am a bit more optimistic [laughs] about his future.

Jane: Oh we tend to argue about it when we discuss it [both laugh]. We do. And I know that I have to be more optimistic about it. It is just very hard. When you get a piece of paper and you write down all his difficulties, it is really hard to look over that and see the rainbow at the other end, and see the pot of gold at the other end, and think, yes he can get there, because you see, he has so much pulling him back. It doesn’t mean that I don’t want it to happen. It is to me, sometimes, I think more realistically [both laugh].

Dan: Not necessarily more realistically it is just that you have read into things more then I do, so I try not to get too much dive head first and put my foot in it, feel the water [both laugh]. It is like I said if you read too much about it it takes you to that stage doesn’t it?

Jane: Yes. I think that is really true.