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Jan: Interview 11

Age at interview: 59
Brief Outline: Jan's older grandson has a diagnosis of ASD.
Background: Jan, a social care trainer and consultant, has two children and two grandsons aged 10 and 5. She lives with her husband. Ethnicity/nationality: White British.

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Jan’s daughter has two sons, aged 10 and 5 and the older son was diagnosed with ASD when he was about four years old. Jan is very close to her grandchildren and sees them often. Her daughter and son-in-law lived with her and her ex- husband for two years after their first son was born and Jan describes having a “particularly close bond with him”. Jan works in the field of disability as a trainer and consultant, but recalls how the family didn’t realise for a while that he may be on the spectrum because he was the first grandson and he related so well to the adults he lived with. 
 
Once he turned three it became more apparent that he had difficulties mixing with other children and there were other signs, such as lining up cars on the floor and being “mad about Thomas the Tank Engine”. Once referred, he was quickly diagnosed with childhood autism and, on Jan’s request, had a second referral to a London hospital where the diagnosis was confirmed with more emphasis on severe.
 
Jan describes finding the diagnosis difficult at first, because she had grown up with a brother with Down syndrome and was aware of how this had affected her parents and her own childhood. In the period after the diagnosis, Jan found she had a dual role as a grandparent but also as kind of key worker or advocate organising things like speech and language assessments, applying for benefits and so on. 
 
Now her grandson is doing very well in mainstream school and apart from concerns about his transition to secondary school, Jan is very happy with this education. She is also very proud of the way her two grandchildren get on and the way in which her daughter and son-in-law have raised them.
 
 

Jan works in the field of disabled children but wasn’t aware that her grandson was any different...

Jan works in the field of disabled children but wasn’t aware that her grandson was any different...

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Can you tell me about his diagnosis, when it happened and what led to it?
 
Okay, even though I work in the field of disabled children, we really were not aware that he was any different to any other child, really for the first two years. I think that’s because he lived with a lot of adults. He lived with myself and my ex-husband, his own mum and dad, and his uncle. That’s my other son. So he related to a lot of adults. We were all very involved in his care. So, he related to them very well.  And he was, an absolutely delightful child. I mean looking back a lot, a lot of parents do say, when they look back that they were exceptionally good and I think actually when I look back, [grandson] was an exceptionally good baby. Very easy, very placid.
 
And because he was the first child born within the family. There weren’t any cousins or, my daughter was the first one of her peer group to have a child, so she didn’t have friend’s children for him to play with, we weren’t aware of his difficulties around social relationships, because he didn’t actually play with many other children.
 
Speech was a little slow in coming, but nothing kind of worrying. And he reached all his other milestones, you know, when other children do. So it wasn’t until he got to about two, two and a half, that we began to realise that actually, maybe there are some issues. And I think for me it was when my daughter was trying to toilet train him that began to kind of worry, because he didn’t seem to understand the need to communicate that he wanted to go to the toilet and that’s why toilet training was quite difficult. And that’s the sort of first clue I think. 
 
 

Jan had experience of growing up with a disabled sibling and was aware of the “sadness” parents’...

Jan had experience of growing up with a disabled sibling and was aware of the “sadness” parents’...

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I found it really difficult. I think because I’d grown up as a sibling, so I had a, as we were saying before we started the interview I had a brother, who had Down’s syndrome. He sadly died three years ago, but he was 64. That’s quite a good age for someone with Down’s syndrome and he had, for the era that he lived in, a reasonably good life. And I think if he lived now it would have been even better, but anyway. 
 
So I’d grown up as a sibling, and in those days, even people with Down’s syndrome were you know, like sent to special schools or residential, in his case a residential school. So I had a brother than came in and out of my life and wasn’t there all the time. And I know from my parents, you know, that, I mean he was great, but the sadness of having a disabled child never really goes away, and it repeats itself again and again, at sort of key points of your life, and for me it was very difficult think. Oh I’d watched my parents go through that all through their lives, as much as we loved [Brother] and he was fantastic, it’s still not quite the same as having a so-called normal child. And now I was going to have to watch the same with my daughter, and I found that very difficult.
 
 

Jan’s grandson’s has been lucky because his grandmother was aware of what his rights were.

Jan’s grandson’s has been lucky because his grandmother was aware of what his rights were.

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I think they’ve, they have found it helpful that, and it has been helpful for them and [grandson] that I do work in this field, and so I’ve known the right contacts. I’ve known what buttons to press at the right time. I can remember not, not long after they moved to, well not long after the diagnosis, probably about a year or so after the diagnosis, they attended the National Autistic Society programme of, for families that had a newly diagnosed child with autism, and they went along to that, and what they came away with was how lucky they were, that I’d known what to ask for at the right time, because compared to the other families in the group, they were so much further ahead. You know, they already had their statement in place, and they just sort of knew what kind of strategies to use and so I think that has been helpful. So I think, in some ways [grandson]’s been lucky that he had a Grandma that was kind of aware of, you know, what his rights were. And pushed for them quite early on [laughs]. So I say I’m pleased I was able to do that, and that’s one of the main ways I support them really. That’s why I still go to school reviews with my daughter for example. I enjoy it, and I like being part of [grandson]’s life, but it does help that I do know, you know, what the law says and what they need to provide and so on. So, I always make sure that he exercises his rights, so but yeah, as I say, I think probably they have disagreements sometimes as to the way they should manage him but I think all parents do with their children whether they have autism or not, so, that’s perhaps have, you know, slightly more. I don’t know [laughs], ask them.

 

Jan says her grandson is “absolutely wonderful” though he can be irritating at times! She saw him...

Jan says her grandson is “absolutely wonderful” though he can be irritating at times! She saw him...

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What about your relationship with him. How would you describe that?
 
I think it’s close. I mean I’m I think he’s absolutely wonderful. I mean he can be irritating. He’s very similar to lots of children on the spectrum, who, he’s got very fixed interests. So for instance, he loves being on the London Underground and talking about what line goes where, and the sort of thing that would bore, you know, a lot of people, but  he absolutely loves it, and he finds that very interesting. And I just feel very close to him. I think probably because he, I did see him grow up as a baby and I saw him every day for the first two years. I think that child was always going to be very special. I think because of my experiences, early experiences, as a child with my brother and growing up like that I had this almost protective kind of feeling towards him and I just want the best for him. I just think he’s great and I do think he’s very, very good with the way he’s coped with a lot of his difficulties. 
 
I think he can play on it sometimes, you know, we have to be careful, because he is quite cute [laughs]. He’s quite clever. So we always have to find that balance of sort of not making too many allowances, but no he’s, he’s pretty good, but he does still find social, social, what’s the word I’m looking for interaction quite, quite difficult as a lot of autistic children do. He’s not always quite sure what how he’s supposed to behave.
 
 

Jan is aware of the implications of having a disabled child on the parents as she grew up with a...

Jan is aware of the implications of having a disabled child on the parents as she grew up with a...

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And at that point my mum was still alive as well, and I was actually really worried about the effect on them. Sort of, you know, that they had gone through a life where they’d had a disabled son, and there really weren’t any disabled rights in those days. I mean they really had to push for everything that they go and now they were going to have to see their precious granddaughter going through the same thing.
 
But as it turns out, I think we all had our concerns about [grandson] in a different way, but we weren’t talking to each other and once we sort of all acknowledged well they are concerns and we’re going to have a diagnosis, my mum for instance, said, “Oh I’m so glad, because I have been worried about how he’s developing and his communication. I’m so glad you’re doing something about it.” We were all trying to protect each other I think, but it would have been much easier if we’d been a bit more open about it, but I did find it difficult, because when my broth… when I was growing up with my brother, as I say he was in a residential boarding school and he went on to residential care. He came to live in the community in his own flat in later years. But at that time that wasn’t an option, and so there were lots of other residents who had so called autism diagnosis even then. And I didn’t really know much about it, so, I suppose in some ways, I was a little bit scared as to what this diagnosis meant for my grandson.
 
I certainly know a lot more about it now, as I think society does generally. But I think if I’m honest, I have to say it hasn’t been nearly as awful as I probably first thought when he was first diagnosed, because he is, he’s doing so well. I’m so proud of the way my daughter and son-in-law, have you know, managed his behaviour and kind of have brought him up. 
 
 

Jan feels more passionate about being a social worker because of her experiences with her grandson.

Jan feels more passionate about being a social worker because of her experiences with her grandson.

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Well as, as you know I do a lot of training for people working with disabled children generally. And I, when I introduce myself at the beginning I sort of say who I work for and what I’ve done. I always sort of say, “But my main passion comes from the fact that I grew up as a sibling and I have a disabled grandson.” That is so true. I mean I think back and I think the different experience that [grandson] has had to my brother. I mean my brother wasn’t allowed to go to mainstream school. You know he wasn’t, even in those days you didn’t live in your local community, and [grandson] has had such a better experience and it’s going to get even better, you know, I think the next generation, I think inclusion will be even better. So that’s why I’m passionate. So I think having [grandson] has made me more passionate about what I do. I’ve been a social worker for absolutely years. I specialised in services to disabled children for over twenty years, long before he came into my life, but he’s actually given me more, even more passion I think to try and advocate for rights to try and make things even better than they were.
 
And sometimes when I get frustrated and think oh you know, he still facing discrimination or this isn’t happening. I think back to how things were in the ninety fifties and sixties and think okay. It’s getting better, [grandson]’s certainly having a better experience than previous generations.
 
 

Jan and her husband were exhausted after taking the grandchildren to the London Aquarium.

Jan and her husband were exhausted after taking the grandchildren to the London Aquarium.

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It’s, its fine. We’re very lucky with [grandson] that he is very adaptable, as long as he knows what’s going to happen, he knows what the plans are, he’s never, you know, particularly difficult. We’re also very lucky that he sleeps really well. In fact when they come to stay it’s the little one that always wakes me up early [laughs]. Not [grandson]. {Grandson]’ll quite happily sleep, sleep on, but yeah, it’s fine when he comes to stay really.
 
Tiring, I mean I find as I’m getting older now, just the fact that its’ two children. I mean I was saying to you earlier, on Wednesday we went down to London for the day and went to the London Aquarium. Now they both behaved really well all day. Both my new husband and I were just exhausted, at the end of the day. Just because we’re getting older and it’s hard to keep up with children that have got a lot of energy isn’t it?
 
 

Jan had worked with families with autistic children so knew a little bit about “typical autistic...

Jan had worked with families with autistic children so knew a little bit about “typical autistic...

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What did you know about autism whenever your grandson was diagnosed?
 
I knew a bit. I know more now but I knew quite a bit. Because I had actually worked with families who had an autistic child before so… but I think a lot of the information I knew then was a bit stereotyped.  But I think that’s probably generally what society knew about autism at that point, which was sort of some of the obsessive behaviours and not liking change and all that, so I did know a little bit about what was considered to be typical traits of people with autism. I knew it was lifelong and I think that’s the bit that is really, that’s very difficult to come to terms with. But I think also what you don’t know at that stage, or you don’t, certainly I didn’t appreciate at that stage, was how well someone with autism can develop, given the right support and help and so on. So that’s been really nice and really positive to see how he’s developed. Because I think I certainly had that fear that he wouldn’t, and this is where the grandparent bit comes on, it wasn’t just concern about [grandson], it was concern about my daughter. Lifelong, lifelong responsibility which I saw with my mum of course you see, and you know, before 84, 85 still having to care for my brother every weekend and of course he was becoming more dependent as well. And so in 84 you know, still having to do lots of the physical care, and I didn’t, that’s what I found very hard, is thinking about, is this what my daughter’s life’s going to be. 
 
 

Jan’'s friends provide her with support both personally and professionally.

Jan’'s friends provide her with support both personally and professionally.

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I think I was quite lucky actually because I got support from… of the three very close friends, two did the same work as I do. That’s why we’re such close friends and they gave me fantastic support, because that’s what they do for a living and they understand, that’s where they’re coming from. So I think I was quite lucky that I did get that sort of, it didn’t occur to me at the time that actually, to think well I want to talk to someone who’s in the same position. If that makes sense, because I thought I was externally well supported and I could actually talk to my friends about how I was feeling which I wouldn’t want to, you know, talk to my daughter about, because she’s got to come to terms with what’s happening to her, you know, and her family, without thinking about the effects on the grandparents.
 
So, and I think that’s important. I can see that other grandparents would need that sort of support, and I think I was lucky with who I had, and the people that I know of course, gave me the sort of networks and contacts that I needed to, to find out the information that was very important to me.
 
 

Jan would like health professionals to take a social model approach to autism and not treat the...

Jan would like health professionals to take a social model approach to autism and not treat the...

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Yes. I mean I think okay, we’ve had the aiming higher agenda for the last two years, two or three years and I think that’s been really key in advancing the greater inclusion of disabled children within our society. I’m really worried that with our new government we might move back towards looking at children more from the medical model, and that we might go backwards again with inclusion. I am a great believer, that, you know, the earlier that children can be included and the more they can be included the better. It has got to be though with the right support. Inclusion doesn’t work if children aren’t supported and don’t have the right resources. So that’s what I would be asking for and in terms of health professionals, I would be saying very much that these aren’t children aren’t ill [laughs]. And it’s about seeing them from the social model and social perspective and looking at how as health professionals we can support them to be included in what other children do. That’s my main message.

 

Jan says that it’s important to focus on the positives; these are very interesting and...

Jan says that it’s important to focus on the positives; these are very interesting and...

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It does get better. I’ve actually just thought of another friend that I have actually who’s got an autistic daughter, who’s now, oh she’s about eighteen, and I didn’t meet her, this particular friend until about three or four years ago, and she was saying it does get better as they get older. It does get easier. And it is very true actually. It’s certainly has been true for her daughter and it’s been true of mine. So it’s about be optimistic. Look at the positives. There are so many, I mean, yes, there are negatives, there are things that you do miss about the fact that your grandchild is not as other children. But there is an awful lot of positives, they’re very interesting and fascinating children. And these days it’s not a big a deal I think as it was back in the fifties, sixties, seventies, but that son or daughter will really, really value your support. But you should give that in the way that you do as a grandparent anyway. You know, the help with childcare. Having them to stay occasionally, that kind of thing. It isn’t really any different. It’s just they’re probably going to need it even more.
 
Because I know we’re quite lucky with [grandson], I know there are lots of autistic children that do, don’t sleep as well or don’t eat as well, but so therefore, you know, their son and daughter will need that break perhaps even more. But it’s very important that we’re there, I think, to support them. And you know, kids just, they’re going to be just as fond of their grandparents, and want their grandparents as much as any other children aren’t they? So it’s a very important relationship I think for grandparents.
 
 

Jan thinks her grandson will get a job and feels fairly optimistic about his future.

Jan thinks her grandson will get a job and feels fairly optimistic about his future.

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And do you think about the future?
 
At the moment I don’t think much beyond the future of moving to secondary school, because that’s a mega, I think it’s huge, a huge step but all children, that move from nice protected little junior school to these massive secondary schools of one to two thousand pupils. It’s huge. And so I don’t really think beyond that at the moment. I think once we’ve gone through that transition then we’ll start to think about oh what’s he going to do when he’s eighteen. But certainly at the moment, I mean I can’t see any reason why he wouldn’t go to university or even I don’t know, perhaps he stay at home to go to university, but I can’t see any reason why he wouldn’t. He certainly intellectually able enough.
 
And I’ve often thought well, you know, there’s an awful lot of work at home now. I can sort of see him. I think he will get a job and I think possibly he will work at home, where he doesn’t have to have a lot of social involvement, but you know, he’ll have some. So I’m fairly optimistic about his future actually, certainly much more than I was when he was first diagnosed, where you just think, oh god this is it? But yeah, so concentrating very much on the move to senior school at the moment and then, a couple of years into that they might have to start thinking sort of what happens when he gets to eighteen.
 
 

Jan found “"finding a role in the initial stages when you’re grieving is helpful”."

Jan found “"finding a role in the initial stages when you’re grieving is helpful”."

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And grandparents can either be involved in being part of the course or babysitting to allow their kids to go there. So there’s a real role and I think finding yourself a role in those initial stages where you’re grieving is really helpful. It worked for me [laughs]. It did make me feel better I think, that I could at least come along and offer some advice as to where to go and what to do, and what help was available.

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