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Sally: Interview 15

Age at interview: 57
Brief Outline: Sally's grandson, aged 7, was diagnosed with autism when he was 3 years old.
Background: Sally is married and has two daughters and four grandchildren. She works as a Church Pastor. Ethnicity/nationality: White British.

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Sally described herself as “a doting grandmother”. She says she has a special relationship with her autistic grandson compared with her other grandchildren because he is the oldest. She felt “absolutely devastated” when she discovered that he had autism saying that she “wanted to cry” but chose to be strong for her daughter instead. Her initial worry was whether he would ever get married.
 
According to Sally, her role is to be there for her grandchildren as someone they can rely on. She believes that she and her family have become more tolerant and aware of differences because of their experience of autism. Even though she and her husband live over 50 miles away they often babysit for her grandchildren.
 
Sally sought information about autism from books and from a former school principal who works at her church. In her role as church pastor, Sally often has to support others. She does not want to join a support group for grandparents as she believes that she would end up supporting rather than being supported.
 
Sally is his maternal grandmother. We also spoke to Rebeccah his paternal grandmother (see Rebeccah’s story).
 

Sally’s grandson could not cope with other children.

Sally’s grandson could not cope with other children.

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Well he was, he was very little. I was trying to, to work it out. Trying to remember it all. When he was born he, well he had a difficult birth, he had a long, Erica had a very long labour and he had to have a ventouse delivery.  And so his head was a little bit distorted when he was born, and he did have a bit of cranial, went to a cranial osteopath to have a bit of massage and manipulation and that. 
 
As he got a little bit older he, we realised he was very sensitive to noise and he would hold his hands over his ears. Even when he was quite, quite tiny, maybe only about six months, he would hold his ears when there was a lot of noise. And then as he got a bit older, and started to be, you know, expected to be more sociable. He couldn’t cope with other children. And he would sometimes get a bit violent, and he would hit out, which was a bit of a worry, and then the noise issue became much worse and if other children were crying he would really be distraught. He would hold his ears and cry himself, and then kick out and, and get quite distressed with it all.
 
 

Sally has a different relationship with her grandson because he was her first grandchild.

Sally has a different relationship with her grandson because he was her first grandchild.

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Well as I said before, I feel I have a different relationship with Ben because he is the oldest. He’s my first grandchild. I try and respect his, his what he wants to do. I try not to, I try not to sort of inflict myself on him, because sometimes he doesn’t want to be cuddled and fussed about, because he doesn’t like it, and he’s getting too old for it. He’s the grand age of seven and a bit. You know, he doesn’t want to be hugged and kissed by his nanny any more. But yeah, I mean I just think he’s such a beautiful child and his outlook on life is so, so different because of the autism, and sometimes I think it’s so very special the way he looks at things. He’s got a huge sense of logic and you know, he, he can see ways of doing things that perhaps other people wouldn’t, and I am besotted with him [laughs]. I’m a doting nanny [laughs]. Very doting.

 

Sally’s grandson became obsessed that a cliff was going to fall on them when they went for a walk...

Sally’s grandson became obsessed that a cliff was going to fall on them when they went for a walk...

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A couple of weeks ago, we went down to the coast near Brighton and we were walking on the undercliff along by Saltdean and he just suddenly got obsessed that the cliff was going to fall on him and he just did, wouldn’t walk along this, this place because the cliffs were going to fall down, and I tried to say to him, “Well look, they’ve been there for about ten thousand years, they will not fall down today.” Then you see little bits of chalk on the ground and you think ooh maybe he’s right [laughs]. And it, it took a long time to, to calm him on that. A long time just to sit. We eventually sat down and talked about it and then he got distracted and you know, then he started worrying about something else. Started worrying about other people’s dogs after that. 

 

Sally has spoken to a colleague, read books, and watched television programmes about autism.

Sally has spoken to a colleague, read books, and watched television programmes about autism.

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I have a colleague through my work at the church who’s been a teacher. She’s a head teacher of a small school. And I talked to her a lot about it. And she explained different types of you know, the different parts of the spectrum of autism, and I talked to her a lot and she was, she was very helpful and various other people who, there’s somebody else I realised at church her nephew was effected, and talked about his experiences. And I just pick up whatever I could. I watched television programmes, listened to things on the radio. Read books, and you know, once you start talking about it, people start exchanging information and giving you books and [um] I’ve read several books on it now. Mainly the one I mentioned earlier, ‘The Dog in the Night time’ or whatever it is called. And there’s another book somebody gave me, that actually her, somebody distant in her family had written about the experience of having two boys with autism. And they’re, they’re quite big now. I think they’re grown up now. And it was quite a harrowing book actually and then watching different things. There was a film, a documentary, not a documentary, a sort of drama about a boy who had a dog, and I can’t remember what it was called now, it’s quite a famous one I think.

 

Sally says accept that you can’t make everything right and respect the children for their...

Sally says accept that you can’t make everything right and respect the children for their...

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And what would you tell other grandparents that it was like to have a grandchild that’s got autism?
 
In some ways, it is this extra dimension of, of life, it’s a different outlook and to try and look at that in a very positive way, to you know, there are difficulties and sometimes you’ve just got to stand back and let the difficulties happen and sometimes you feel you want to cure everything to make everything right, and of course that can’t be done, and to sometimes stand back and let things, let things go. And let them, you know, find their own way of doing things. And to respect him for his way of, you know, his different outlooks. Not to say to him, “Well you mustn’t do that. That’s not the way behave.” And say, “Well you know, that’s the way you do it. This is not the way other people do it.” And you know, to respect him for his difference.
 
 

Sally prays that her grandson will live a fulfilled life and that he will cope with the world,...

Sally prays that her grandson will live a fulfilled life and that he will cope with the world,...

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What role do you think your faith has had in helping you to cope with this?
 
I think is had a lot of… because I’ve prayed for Ben well before he was born I prayed for him, and then, you know, when you realise his difficulties then you pray in a different way. And I do feel that, well for me, I pray for myself as well, you know, how to react and what’s best to do, and I felt great comfort in that. It’s been very, very supportive. And of course lots of people in the church have been praying, and you know, when there’s been medical appointments and that, and I said, you know, “I’m going to pray for Erica and Ben on such and such a day.” And that is very supportive. Whether it makes a difference or not, I don’t l know. I live by faith, not by certainties and you know, I’m sure that God is looking out for Ben in a very special way… yeah. I pray for him a lot.
 
And do you pray that he be supported, is that what you mean?
 
I pray that he will have a fulfilled life. That he’ll have what he needs at the different times he needs it. And that he will cope, and other people will cope with him. That’s the other big thing isn’t it that the world will cope with Ben, will Ben cope with the world.
 
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