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Janet: Interview 01

Age at interview: 65
Brief Outline: Janet has several grandchildren. She talks about her 8 year old grandson, L and her 6 year old granddaughter G both of whom have autism.
Background: Janet is married and is a retired waitress. She has several grandchildren. Ethnic background/nationality: white British.

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Janet and her husband are very involved with their two grandchildren with ASD, Louis and Georgia. Janet wants to help her daughter and son-in-law as much as she can and sees her role as that of helper and supporter. 
 
She was ‘devastated’ when her two grandchildren were diagnosed, but she tries hard to stay positive. She loves both grandchildren very much and wants to do as much as she can do to help. She says that her daughter and son-in-law manage really well but do get very tired as neither child sleeps well. Her and her husband often look after the children at weekends and evenings so her daughter and her husband can spend some time together. Janet and her husband usually go on holidays with her daughter’s family.
 
Janet has L and G to stay regularly, and makes sure they have plenty to do. She takes them riding, to indoor playgrounds and country parks. She has developed a thick skin to cope with other people passing judgement on her grandchildren’s behaviour. Janet and her husband go to several support groups and feel they know a lot about autism. Janet believes that autism runs in their family and feels that several family members are probably somewhere on the autism spectrum. 
 
Janet was offered support from her grandchildren’s specialist paediatrician, but feels that other doctors, particularly those working in A & E departments, should have more training about autism. 
 
L and G both attend ‘absolutely brilliant’ special schools. G doesn’t have any language yet and doesn’t enjoy physical contact including being cuddled if she’s hurt herself, or hugging when it’s time to say goodbye. L is getting more communicative and Janet feels happy when she sees him playing with other children his age.
 
The most challenging aspects of looking after L and G are coping with toilet training, and getting them to eat at mealtimes. Sometimes Janet worries that they haven’t eaten enough proper food in the day. 
 
We also spoke to her daughter, Amanda, who is the children’s mother (see Amanda’s story).
 
 
 
 
 
 
 
 

When Janet’'s grandson was around two, “it was like something had switched off and he went...

When Janet’'s grandson was around two, “it was like something had switched off and he went...

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If I could kind of take you back to when they were little, when they were babies, when they were first born. When did you first realise something was wrong. Or didn’t you?
 
I didn’t realise to be honest at all. Because they just did everything that normal, normal babies do. Saying ‘daddy’, ‘mummy’, playing with toys, just doing normal baby things. And then when my grandson got to about two and a half, it was just like something had switched off, and he went introverted. Wouldn’t, wouldn’t have eye contact. All the foods that the he liked, normal things that he ate, he just was refusing to eat. That was difficult for my daughter as well. 
 
And then other people started to notice as well. My sister in law noticed some behavioural problems, because she’d worked with children - she was an occupational therapist and she’d worked with families with children with special needs - and she sort of picked up on one or two things, and that was when my daughter decided to seek medical help. And they went through a process called CDC which takes four, four weeks. They’re observed by a panel of experts. And eventually you get the diagnosis then. 
 

 

 

Janet said that some people were blasé about her second grandchild's diagnosis of autism and didn't realise that it was more upsetting than the first.

Janet said that some people were blasé about her second grandchild's diagnosis of autism and didn't realise that it was more upsetting than the first.

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But as the little, as my grandson got sort of developing and doing things. He did everything as a normal baby would at the time, and then she started to quirky little things. And we talked about it, but it was more really my sister-in-law, being, working as a health professional that highlighted things and, and put her onto people, that you know, might be able to give her advice and help. So initially that was… And then with the little girl, my granddaughter, she could see almost straight away, which was quite sad really, and people sort of think, well when you’ve gone through it with one child, it would be easier, but I think she was more devastated with the little girl because she hoped for the future for them, and it was just, knocked her for six a bit really. 
 
And nobody really... people that she was not, not the health professionals that she deals with, but family and other people, just seemed a bit blasé about the whole thing, ‘oh well, you know, you know what to do. You know what’s going on now, you know, it should be easier this time.’
 
But she was just devastated because two children she had, and they both had this disability. But… and when [granddaughter] got diagnosed that was when she just decided to get all the information and any help that she could get. 
 
 

Janet’s grandchildren are genuinely pleased to see her now which is a good response, as they...

Janet’s grandchildren are genuinely pleased to see her now which is a good response, as they...

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When we, when we arrive if they’re busy doing something else, because they’ve got three rooms downstairs and they don’t always see us straight away. So either Mum or Dad will say, “Nana and Grandpa are here.” And they both come running usually. Usually and yes, they’re pleased to see us. And that’s a good response. We didn’t get that for a long time. But we’ve spent such a lot of time with them since we’ve been retired that we’re sort of familiar faces around the place now, and they do look forward to us going I think. They’re genuinely pleased when we go. And the little boy used to cry when we left, but he doesn’t cry now. “And they’re going back to Nana’s house now, you know, Nana and Grandpa have got to go back to their house. You’re staying at your house.” And you talk around this.

 

Janet wants to hug her grandchildren if they hurt themselves but she is held off at arms length.

Janet wants to hug her grandchildren if they hurt themselves but she is held off at arms length.

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My granddaughter finds affection difficult, even with her Mum. More so with her Mum than her Dad - she’s quite affectionate towards Daddy. They seem to have a special bond those two, and my grandson, he’s more for his Mum. They’ve sort of paired off one, one to each parent and but [grandson’s name] is, sorry, my grandson is affectionate towards his daddy as well, but the little girl’s a different case altogether. If it’s her idea, if she comes and sits on your lap, you can, and she’ll get your hand and put it round her, and have a little cuddle. But when we’re leaving, if we’ve been in their house and we’re leaving to come home, my husband sort of, “Come and give Grandpa a hug and a kiss and Nana.” My grandson will, but the little one doesn’t, doesn’t like kisses any more she’d rather do a high five. So, that was my husband’s idea, “Oh well if you don’t want to kiss Grandpa, gives us a high five then.” And he puts his hand up and she [claps] does that now, and that’s quite good. 
 
But she can be. But when, I find that a bit upsetting as well, when she, if she hurts herself they find it, autistic children find it really hard to express pain. We’ve seen them have some really terrible spills that would have left regular kids absolutely sobbing. And they really hold it in and find it hard to display emotion, their reaction to pain. So when the little girl hurts herself you just want to pick her up and give her a hug. And her hand goes off like this, and you’re held off at arms length sort of thing. But, that’s hard to deal with sometimes.
 
 

Janet feels a sense of achievement that her and her husband have developed a comfortable...

Janet feels a sense of achievement that her and her husband have developed a comfortable...

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And that’s where I think grandparents can play major role. If they’re got… because my daughter doesn’t like the idea of… I mean there is respite available, and because she’s got two, you know, should could get respite care for them, but we’ve got such a close-knit family, that she, we, they do go away for weekends and things and the children stay with Nana and Grandpa. And it works quite well, so, you know, we’re appreciate of any, any help that’s out there, but professional help, but it’s sort of we function well as a family really, and I think that’s its good for my son, son-in-law and daughter, and for us as well that we’re involved with the children, and it’s just given us a lot better understanding, because children were sort of labelled years ago, and, and put into institutions, and I’ve read up on this, and its horrific some of the stories you hear, and now there’s more awareness to it, you know, and families can get involved, and get professional help, and the, the children seem a lot happier and more content, because they’re in a loving environment, instead of institutionalised.

 

Janet’s daughter uses direct payments to employ someone to help with her children.

Janet’s daughter uses direct payments to employ someone to help with her children.

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There’s also, I don’t know whether it’s nationally or if it’s in just this area, but [daughter’s name] now, she didn’t like the idea of them going into respite. Because of the role we play it’s sort of easier if she wants some time or they want to go away for a weekend for us to do it, and she’s happier with that, than them going into respite. So there is a scheme called Direct Payments. So [daughter’s name] has been given a bank account and a set number of hours each week and she’s employed the lady that was the escort on the bus when they both started school, because she’s familiar with the children. They both like her and know her well. So that’s helped a lot within the last or so.
 

Janet is part of the “grannies army” that is involved with the support group run by her daughter.

Janet is part of the “grannies army” that is involved with the support group run by her daughter.

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And we’re, we’re finding talking to, we’re involved with groups that my daughter runs. We have a monthly meeting of parents - my daughter runs a support group - and we have monthly meetings at an old school that’s a family centre. There is a sensory room there, an art room where they can paint and draw, toys, an outdoor play area. And my husband and I both are involved with that. I run the coffee shop for parents. And my husband and I, we make, they knock off half way through and have a break and the kiddies all get toast and juice, and a sit down, you know, a rest period half way through the morning. And so that’s pretty good. 
 
And we have quite a few grandparents that are like us that have got, you know, really involved, wanted to be involved. And my daughter calls us ‘grannies army’ [laughs]. Because you know, we’re all sort of in the same position and we’ve all mixed socially together now and meet up and have gatherings and outings and things involving the children. 
 
Sometimes it’s just the parents and grannies, and it’s really good. And so we’re trying to all of us, as grandparents and parents to the... you know be as supportive and positive as we can, and function that way, and its working quite well really. But the long-term I try not to think too much about long-term, because as I say my husband and I are both in our sixties and I find that a bit painful that when they grow up I might not be around. 
 
 

Janet feels frustrated at the lack of awareness of autism among some health professionals;...

Janet feels frustrated at the lack of awareness of autism among some health professionals;...

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From that perspective from health professionals I think... just as an instance, my grandson put, he’d got the bath sponge in the bath and he’d pulled a little piece off and put it up his nose, and this caused a problem and we had to take him to A & E. And it was just horrendous the performance we had with the doctor that was on duty in A & E because, “What is this autism?” He was a foreign gentleman. “What is this autism? I don’t understand? “And you just wring your hands, you know, just feel so frustrated because, so there’s not the understanding. I don’t think there’s enough knowledge among health professionals. I mean if it’s their field like the paediatrician, the consultant paediatrician that diagnosed them, yes.
 
But my grandson had a fall recently, and broke his leg, through an accident at one of the play centres in our local town. And... my daughter took him to, no my son-in-law took him, because my daughter had a yoga class, and my son-in-law took him to A & E because it was too late for her to cancel this, the class that she was running. And they immediately alerted Social Services, because they said it didn’t look like a regular accident, and my son-in-law couldn’t explain the situation enough. 
 
So that was a bad situation to be in, because, but my son-in-law did say that we could, he could produce an accident report from this place where the accident had happened, and because he had a fracture and had to have a pot from thigh to toes... it was sort of distressing for [grandson’s name], but it was distressing for my son-in-law as well. Because as he said, he said before he left, before my son-in-law left with my grandson that he would have to inform Social Services, and they would be investigating and he was just [small laugh] you know, well if you have to do that, you have to do that, he said to the guy. But he said, “You know, I can assure you that it was an accident.” You know, he said. “Well this is normal procedure, we have to do this, so...” 
 
 

Janet’s message is to give your grandchildren love and support and just be positive.

Janet’s message is to give your grandchildren love and support and just be positive.

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Not really. Just... as a grandparent, my grandson, it was our first grandchild, so I was asked by my daughter and son… well my son-in-law first and then my daughter, if I’d like to be present at the birth which I was, and that was such an experience. And then you watch this little baby develop, and then this autism kicks in and it was just devastating really, but to any grandparent out there, just don’t let it hold you back, you know, just don’t be negative, you know, just be positive all along the line, and don’t think about, I mean you have to think about the future and what will happen, but that’s really down to us. 
 
But as grandparents just give your children the support and give your grandchildren all the love and support you can, and just be positive and get whatever help is out there. And talk to as many people. I’ve just found myself waffling on for hours to people. I met a young man on the station today while I was waiting for you to arrive, and he worked as a, he works in health care with elderly people at a care home, and, and we sort of got talking about this subject. So as grandparents if you feel you want to be involved and just get involved, and just don’t see the black side of it, the negative side, just accept the children for what they are, and just love them and give them care and attention, and give the attention all the help and support they need as well.
 
 

Janet finds it too painful to think about the future when she and her husband may not be around.

Janet finds it too painful to think about the future when she and her husband may not be around.

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And we’re, we’re finding talking to, we’re involved with groups that my daughter runs. We have a monthly meeting of parents - my daughter runs a support group - and we have monthly meetings at an old school that’s a family centre. There is a sensory room there, an art room where they can paint and draw, toys, an outdoor play area. And my husband and I both are involved with that. I run the coffee shop for parents. And my husband and I, we make, they knock off half way through and have a break and the kiddies all get toast and juice, and a sit down, you know, a rest period half way through the morning. And so that’s pretty good. 
 
And we have quite a few grandparents that are like us that have got, you know, really involved, wanted to be involved. And my daughter calls us ‘grannies army’ [laughs]. Because you know, we’re all sort of in the same position and we’ve all mixed socially together now and meet up and have gatherings and outings and things involving the children. 
 
Sometimes it’s just the parents and grannies, and it’s really good. And so we’re trying to all of us, as grandparents and parents to the… you know be as supportive and positive as we can, and function that way, and its working quite well really. But the long-term I try not to think too much about long-term, because as I say my husband and I are both in our sixties and I find that a bit painful that when they grow up I might not be around. Sorry
 
 

Janet and her husband play a major role having their grandchildren to stay for weekends.

Janet and her husband play a major role having their grandchildren to stay for weekends.

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Sorry, my role is keeping them amused basically. We have them for weekends. My daughter, to give them, my daughter and son-in-law a break. We had them just recently for a weekend, and we’ve got annual membership to a country park, with a play area and animals and gardens, Victorian walled garden and things. So they like to go there. So that’s usually a trip for one of the days. They like swimming. They’re both good swimmers. They love water. So that’s another activity that they enjoy. And they like being in my home as well as their own home. We’ve got different toys here, and different activities, and my husband their grandpa is good with them. He’s one of five children, with a ten year gap, and the older ones and the younger ones. So he was brought up with younger children around him. So he’s got lots of patience and understanding, and probably more than myself! But it works really well, and we don’t have any problems with them. They go to bed when we have them, and bath time, bedtime, we read stories to them and, just like regular kids really. But ….

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