Jan: Interview 05

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Jan found it upsetting that her twin grandsons would ignore her when she visited and remain glued...
Jan found it upsetting that her twin grandsons would ignore her when she visited and remain glued...
Jan found the diagnosis helpful as the family had already decided that her grandson was on the...
Jan found the diagnosis helpful as the family had already decided that her grandson was on the...
I think it was just that by that time we’d all really decided that that’s what it was. I’ve heard many parents of disabled children, whatever their disability is, say you know, it’s so helpful to have a diagnosis, because then, you know, you can go on the websites, you can tell people what the matter is. You can, you begin to sort of come to terms much more with it and I can, I really understand that now. I can see what people meant about that. You can... you, well people know what you’re dealing with, you know, and you can, and obviously you start to get the benefits and all of those things which obviously have been very significant for the boys. And made a lot of difference to their lives.
Jan is very conscious of her granddaughters experiences and likes to make space for her to do...
Jan is very conscious of her granddaughters experiences and likes to make space for her to do...
Jan struggled at first because she felt she ought to be doing more with her grandsons, but now...
Jan struggled at first because she felt she ought to be doing more with her grandsons, but now...
Jan finds it hard that her grandchildren want to retreat and be on their own.
Jan finds it hard that her grandchildren want to retreat and be on their own.
I know now what to do, to retreat and sometimes they just want to be on their own. And let them, let them get on with it really. But it’s not very nice, and then it’s quite distressing and certainly one of them has big crying fits and it’s very hard to understand what’s the matter with him, and it’s difficult to intervene, whereas normally, it’s a child you would pick up and put on your lap, you can’t get anywhere with that at all. So he’s just lying on his mattress in his room, because they have very bare rooms, because otherwise they’d just destroy it all. So he just lies here and weeps really, and sort of late at night that’s quite hard I think.
Jan finds it difficult that her daughter and family cant come round for a meal.
Jan finds it difficult that her daughter and family cant come round for a meal.
Jan has been very touched by some of the responses she has got from particular places.
Jan has been very touched by some of the responses she has got from particular places.
Jan often goes out with her daughter in the holidays to help with her grandchildren.
Jan often goes out with her daughter in the holidays to help with her grandchildren.
Jan has found she has moved into a kinder bit of the world and it does your heart good.
Jan has found she has moved into a kinder bit of the world and it does your heart good.
Somehow you move into a kinder bit of the world, and that’s no bad thing is it? You know, it’s sort of, it’s not a place you expected to be through this experience, but it is a place that I find myself in, that I’m quite surprised at actually how very, very nice some people have been, and certainly that event, was just very nice really that people were so supportive.
Jan gives an example of something she learnt from the portage teacher to do with going to the park.
Jan gives an example of something she learnt from the portage teacher to do with going to the park.
One of the things we learnt really quickly from the portage teacher, I think it was, I used to take the boys to the park just up the road, and you know those swings that you sit in, that you sit little child in, so as they can’t fall out, and they told us that you weren’t supposed to, you push them once but don’t push them again until they look at you, because this is to encourage their interaction isn’t it? Well you feel a bit of a lemon stood in a park [laughs] you know, waiting for this child to look at you. You know, it’s just really hard, you feel, you know, what are the other mothers thinking, what, why doesn’t this granny push her child again? You know. But it did actually work, but you’d never know would you, unless somebody had actually explained that to you, that they have it’s like a sort of 30 second maybe even five minute delay as to how they’re going to respond. So you could have been carrying on pushing, pushing, pushing and they’re not actually learning anything. But if you stand there and wait [pants] and wait [laughs] and it’s getting cold, and how much longer have we got to stand here for? And you know, I think that’s a nice simple example of things that you need to know really.
The portage teacher taught Jan how to encourage her grandsons interaction skills. The Hannon...
The portage teacher taught Jan how to encourage her grandsons interaction skills. The Hannon...
One of the things we learnt really quickly from the portage teacher, I think it was, I used to take the boys to the park just up the road, and you know those swings that you sit in, that you sit little child in, so as they can’t fall out, and they told us that you weren’t supposed to, you push them once but don’t push them again until they look at you, because this is to encourage their interaction isn’t it? Well you feel a bit of a lemon stood in a park [laughs] you know, waiting for this child to look at you. You know, it’s just really hard, you feel, you know, what are the other mothers thinking, what, why doesn’t this granny push her child again? You know. But it did actually work, but you’d never know would you, unless somebody had actually explained that to you, that they have it’s like a sort of 30 second maybe even five minute delay as to how they’re going to respond. So you could have been carrying on pushing, pushing, pushing and they’re not actually learning anything. But if you stand there and wait [pants] and wait [laughs] and it’s getting cold, and how much longer have we got to stand here for? And you know, I think that’s a nice simple example of things that you need to know really.
Jan says be straightforward, dont mess people about.
Jan says be straightforward, dont mess people about.
Oh I think my message is the one I’ve said really, that, be straightforward, don’t mess people about. Tell them the truth and when you say you’re going to ring back, ring back even if you haven’t got the answer. I don’t think I ever realised the extent to which people are hanging on your words. You know, if you said oh I’ll ring you back on Monday. Okay so you’re busy on Monday, you know, you’ve got 15 other million things to do. So you ring back on Tuesday, and you’ve forgotten actually that person is thinking, oh she said she’d ring back on Monday. And yes, I think being straightforward.
Jan worries about the physical and emotional stress that can be experienced by parents of...
Jan worries about the physical and emotional stress that can be experienced by parents of...
Yes. But it’s hard isn’t it really? I think I can, I think it’s probably fairly important to think a bit more about the present and, because you don’t really know what’s really going to happen in the future, but yes, I mean obviously it is difficult, and it’s very hard for my daughter and son-in-law to think about the future. They’ve, you know, having had a large grant from the District Council to improve their house, and they’re about to have another one to improve the bathroom area, it’s, you know, their intentions are clear that they want to keep their children at home and manage them. But just as the issues for me managing them as they get bigger they will be there for my daughter as well. My son-in-law’s quite a big chap, so it’s a bit easier for him. But he is in his forties, you know, so it, yes, there are, have to be health issues for all of us as we get older, and in a way, I think there’s some research isn’t there, that says that parents of disabled children often do have quite a lot of health issues, because they experience a degree of stress, and they are often having to do quite a lot of physical things.