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Jan: Interview 05

Age at interview: 64
Brief Outline: Jan's twin grandsons were diagnosed with autism when they were one and a half.
Background: Jan has one daughter. She also has three grandchildren; one granddaughter and twin grandsons aged ten and eight respectively. She has retired from her job in social services management. Ethnicity/nationality: White British

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Jan has three grandchildren; an older granddaughter and twin grandsons with autism. When the twins were one and a half, Jan and the parents began to suspect they may have autism. This was later confirmed with a diagnosis. 
 
Although, the family were not surprised by the diagnosis, and managed to accept it, Jan feels it was important to also recognise the pain and loss that she felt, and gives the examples that she will never watch them play rugby or see them go to university like other grandparents may. There are also lots of positives that Jan has experienced. She has been surprised at how kind and understanding people have been towards them. She feels that, because of their experience, they have moved into a “kinder bit of the world”. Jan feels her granddaughter deals with the situation very well and has developed the skills and attitude which enable her to help her brothers. 
 
Jan stopped work around the time of the diagnosis and although she was ready for retirement, she describes their diagnosis as a ‘pull factor’. Her grandsons are homeschooled as this allows for more individual attention to be provided for them. She has a keen interest in crafts and textiles which has translated into a useful resource during homeschooling. Jan also helps with taking the children out on trips and with general childcare and will do things like take her granddaughter to Brownies as this eases the overall childcare for the parents. Currently Jan is entirely committed to family care responsibilities, which she does not mind at all and is very happy to provide help. However, she does foresee a future where she physically will not be able to provide care as she grows older and her grandsons bigger. 
 
As well as providing childcare, Jan also provides support by listening to and advising her daughter. She feels that if her grandsons were not autistic then she wouldn’t be as close to her daughter or as involved in their lives as she is. Although she does not wish to glamorise it, Jan feels it is nice to be a ‘much needed granny’.
 
 

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...

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What happened was that when they were about one and a half, they were seemingly absolutely fine, normal, healthy children, who were developing a few words in the normal way of a child. Then in the next three months I think the best word to use is like they disappeared. They stopped making any noises at all. And they went very, very quiet, and when I used to visit, and I was probably there two or three times a week at least. There were often, the television was on, and maybe the Teletubbies was on. It was quite startling really, because when I got there, my older grandchild would always have sort of heard me coming. She would have been, even at nine months she’d have been crawling to the door, she’d have been looking in my handbag for the chocolate buttons or something. But the boys were never like that. They never came. They would just be sort of sitting or popping about. 
 
And if the television was on, particularly the Teletubbies, you could go in and you’d be saying, “Hello, hello, here’s Granny.” And, and in order to get any response you had to actually get right in between them and the television. And the response you got was actually they pushed your head out of the way. And I have to say that’s one of the things I really found the most upsetting. It was quite a, it just seemed such a strange kind of behaviour. And I suppose it was when that had got sort of around the Christmas time sort of when they were, just before they were sort of three months off being two. And it was just after that that I can remember my daughter, well I can remember thinking I’m going to have to talk about this, and then in fact my daughter said, to me that they were really worried about their talking. And she went to see her health visitor very shortly after that and then referrals were made.
 
 

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...

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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 granddaughter’s experiences and likes to make space for her to do...

Jan is very conscious of her granddaughter’s experiences and likes to make space for her to do...

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So I do a lot of things like that, and I think the other thing I really like to do with my granddaughter is just to, that I have very much an open house for her, and at home she’s not able to play a game in the living area that she can put out, because it would just get pulled about well, you know, we couldn’t really sit down and play a game of Scrabble with the boys near us, because they would be very interested in those little tiles and they’d probably eat them or something.
 
So when she comes here, I actually quite like her to be able to put things on the floor and although it might irritate me a bit, I think it’s quite nice for her to be able to do that and not to have to put them away until bed time.
 
 

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...

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I suppose that in terms of doing things with them at home, they’re interesting in as much as they’re quite self contained little chaps. They can go and bounce on the trampoline for an hour, an hour and half, two hours. They can run about in the garden, pulling the twigs off the hedge. And you, in a sense, you don’t have to do a lot. And it was something I used to struggle with to start with to start with, because I used to think I ought to be doing more. I ought to be sitting down and teaching them A, B, C or reading books. They’re not very keen on reading books. So it’s actually quite hard to get them to sit on your laps and do things. They, their concentration is very limited, so, you can, you can do activities with them. I tend to more activities when I’m there with my daughter and I may be helping. 
 
I do a lot of textiles and craft work and I know that my daughter’s going to have a go at, there’s some kind of felt making that you can do. So she’ll get me along to help doing that kind of thing, because I know a bit more about it than she does. And… but on the whole you don’t have to do that much with them, other than the fact that you have to keep them safe, and keeping them safe is quite a big issue, because you need to know exactly where they are really all of the time. And you need to be clear that they’re not in the kitchen, the bathroom or the sitting room. Or likely to, you know, you need to be sure that the gates are shut in the garden and they’re not going to escape. You need to be sure that one of them is not climbing on the wrong side of the banisters, and hanging off the sort of top of the stair rails. 
 
So there are things like that, which I think, that, in a way those are the harder things to manage. They’re also both doubly incontinent still. So you spend quite a lot of time dealing with that when you look after them. Their diets are quite limited. But they, they do talk to you in their own way, and they use what in this county we call total communication, but it’s similar to Makaton. So they use some of that. Not a huge amount, but they do use some, and they use the photographs. They use PECS, the little photographs and symbols, and they’re very good with them. So they spend a lot of time giving you pictures of breadsticks or crisps or whatever it is they fancy at that moment.
 
 

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.

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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 can’t come round for a meal.

Jan finds it difficult that her daughter and family can’t come round for a meal.

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But you know, the biggest problem that we have with them in terms of going anywhere is like in this room, which is full of all my bits and bobs, and I suppose is one of my big sadnesses, is they don’t come here, because we couldn’t manage them in here.
 
In this room?
 
No.
 
Right.
 
Because everything would, everything would just go. We might manage one for half an hour with two of us here and the garden door open. And we might manage one in the kitchen. But otherwise I’d have to clear the decks really. I mean like you do for a two year old, but of course now they’re much bigger, so you wouldn’t be able to do it in a way that you would and make it satisfactory, and you know, if I lived in a house that had a separate dining room, you know, I could keep a room that I could have them in really.
 
So I haven’t had them here... for a long time now. But they were having some work done in the house and they did come in the garden I think one day in the summer for a little while. And... I think what is also sad about that is that it means that as a family they never come here for a meal. And I do find that quite difficult because that feels to me what families do. 
 
And it’s the same issue in terms of like going out for Sunday lunch which is something we used to do when they were smaller, but we actually don’t do that now. And what we did, what we’ve done for two Christmas’s is one of the direct payment helpers has come one day before Christmas on a Sunday and she’s stayed with the boys and then the rest of us have gone out for a Sunday lunch, well for a Christmas dinner really.
 
 

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.

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I, on the whole I’ve been very touched really by the sort of care you get. I mean the Asda shop here is very near to some homes for people with learning disabilities. That’s near to where my daughter used to work. And I mean they’re always helpful, and when she used to go with the twins when they were smaller, and she could go out on her own, and perhaps she’d stop and have a coffee or something, they’d always bring the stuff over for her, because they sort of, you know, they twigged that and I think that supermarkets and places like that, it’s been in their interest hasn’t it, to be very helpful to disabled people so, I don’t find that difficult at all. I suspect we’re quite outspoken now though and I think if anybody any hassle we’d probably give them quite a bit of hassle back really. 
 
To start with, yes you can be a bit embarrassed. One of the things that one of the boys doesn’t like doing, well they both like it, but one of them in particular, is he’d prefer not to have any clothes on at all really most of the time. But obviously he has to have clothes on when he goes out, but at home, you know, and he’s out in the garden without a top on. But I can remember taking him out in the pushchair, long before it was clear to everybody around, you know, that there was a problem and he just took his tee shirt off you know, five or six times and I put it back on again, and eventually I gave up. Now you don’t normally see children walking around stripped to the waist in England, in their pushchairs. And I can remember having people give me sort of have odd, give me odd looks, but you get a bit hardened to it, and my daughter said something the other day about, and I had it happen to me as well. Somebody said to us when they were getting quite large for pushchairs, “Well bit big for a pushchair aren’t they?” Whereas, and because they don’t look as if there’s anything, and there isn’t anything the matter with their legs, I mean. So that was quite interesting really, but you just learn to look the other way.
 
 

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.

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I do also go out with them quite a lot during school holidays, or now they’re at home all the time, if they’re going on a bit of an outing, I’ll quite often go, because it really is, you can’t really take the two boys out in the car on your own. Even my daughter and son-in-law rarely do that now. Because they’re both quite a good size and you know, all the issues of going to the toilet, and just the safety on the roads and so on. We don’t really let their hands go when we’re out with them. We always hold on to their hands. I think it’s those kinds of things that in a way I do more of.
 
The other thing that I’ve done with them which is quite entertaining is since they were two, well ever since I knew they were autistic, probably before, is that little tune, the Grand Old Duke of York, and you lift your arms up and down, and so that’s six years I’ve been doing that. They still, they might just about say ‘up’. They will always do it with me. They like doing it with me. And just one day last week one of them actually let go of my hands, and was able to do a little bit of it on his own. But it’s a stunning example of the need for repetitive learning [laughter in voice] with them.
 
 

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”.

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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.

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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...

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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, don’t mess people about”.

Jan says “be straightforward, don’t mess people about”.

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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...

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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. 

 

Jan’s grandchildren have a good relationship at the moment and she hopes that it is maintained.

Jan’s grandchildren have a good relationship at the moment and she hopes that it is maintained.

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I think, in the longer term future, what is... quite concerning is the impact on the siblings of disabled children, and I, you know, I think about my granddaughter, because there will be a time when she will be, you know, like in the normal course of events they’ll be a time when she is their only next of kin. And they will be her brothers forever won’t they? And I’ve, you know, I’ve never really talked that much with my daughter and son-in-law, but I, you know, that has to be a long term issue that is concerning. 
 
But, you know, she does have a nice relationship with them and I hope that everybody can maintain that, so that when she becomes a difficult teenager, she may not [laughs]. But you know, hopefully she’ll still stick with that and, but it is a big issue for siblings I think as time goes on.
 
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