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Helen: Interview 03

Age at interview: 57
Brief Outline: Helen's grandson, now seven, was diagnosed with autism when he was two years old.
Background: Helen lives with her husband. She has two daughters and four grandchildren. She works as a counsellor. Ethnicity/nationality: White British.

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Helen has always been very involved with her grandchildren. She actually witnessed the birth of her grandson with autism and describes this as “one of the most profound moments” her life. 
 
Her grandson was diagnosed with autism after she and his parents noticed that he had difficulties acquiring language and tended not to respond when his name was called. Helen describes how getting the diagnosis was “the most appalling experience” because during the meeting numerous health professionals focused on the things that her grandson could not do.
 
Helen loves spending time with all her grandchildren. She does different activities with each of them individually. She takes her grandson with autism swimming and bakes cakes or goes to the cinema or museums with the others. 
 
Helen explains that grandparents “hurt twice” as they want to spare the pain of both their child and their grandchild. She sees her role as supporting her daughter, babysitting for and playing with her grandchildren, and using her skills as a researcher to help her daughter and son-in-law gather information in preparation for the “fights” they have had to secure services for her grandchild.
 
 

Helen became concerned when her grandson watched Teletubbies over and over again but didn’t pick...

Helen became concerned when her grandson watched Teletubbies over and over again but didn’t pick...

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And tell me about what led up to his diagnosis?
 
Well. As I say the first thing that happened was he lost language. And he would watch the Teletubbies and he’d watch it over and over and over and over again. And I thought it was quite extraordinary that watching it and the exposure he had, he wanted it on, so it was his sort of thing. It wasn’t that my daughter was forcing him to watch it. He was demanding it to be on. I couldn’t understand why he couldn’t pick up the language that was on there. Because it’s very simple. It’s lots of sounds and obviously it’s been researched that it should be sounds that match what children are likely to want to say. And it didn’t make any sense to me that, exposed as he was to this over and over and over again, that he wasn’t making the sounds and reacting to it. So that was the first thing. 
 
 

Helen said that the multi-professional meeting she attended with her daughter was “the most...

Helen said that the multi-professional meeting she attended with her daughter was “the most...

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And then he started to be assessed. I think that was driven through the GP in the end. And he had a battery of tests. He was tested by about eight different professionals, and it was November 2005, about 7th November, and my daughter and her husband were summoned to a multi-professionals meeting and they asked me if I would go too, because I had got knowledge of the special needs department of the of the local authority and I knew quite a lot about what might happen. And I said, to them, well I was quite clear that it was their meeting. That I would only intervene if I thought that I could add anything. I was clear that they were the parents, I was only the grandmother, but I did have rather particular knowledge.

 
And we turned up at this meeting in a place not far from here, not in this local authority and sat in a room and I thought this was the most appalling experience that any set of parents should ever be expected to go through, where eight individuals sat round and told my daughter and her husband all the things that this child could not do, and how he failed on these tests, and that test and not one person had any grace to say, a) that he was a nice little boy, or b) notice anything that he actually could do. It was compounded by the fact that the paediatrician was a complete and utter, I think we’d have to put some bleeps in really now for the word I’d want to use about her. And she certainly should never have been working with parents and children. She was an absolute nightmare. 
 
And the upshot of this was that this little boy was put on a waiting list for absolutely everything, nothing was offered to immediately at all in terms of help, and they were told, my daughter and her husband were told that if they didn’t accept the diagnosis that he was autistic there and then, he also would not be put into the Earlybird Scheme. 
 
 

Helen was concerned about her younger grandchild who was one when his brother was diagnosed.

Helen was concerned about her younger grandchild who was one when his brother was diagnosed.

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There was also then the concern my daughter had because her second child was not yet at the age the first one was when he was diagnosed. So she’s starting to look to see every little quirk he had. Is he, is he autistic? And then she had, she had wanted to have more children. So one of the issues that came up for them was, would they go ahead and have a third child? And they talked about it in the family and of course there were reasons not to and reasons to. And the reasons not to would be, well if it’s another boy there’s a high chance that he could be autistic. But that if it was a girl it would be a high chance that she wouldn’t be. And it would mean that sibling number two had got a normal sibling to live with, which longer term meant that sibling number two would not have all the burden of the disabled child falling on his shoulders. There would be two siblings to look after the older one should anything happen to mum and dad. So there was lots of reasons to and not to.

 

Helen has a lot of unanswered questions about autism but thinks that the MMR “was the final straw...

Helen has a lot of unanswered questions about autism but thinks that the MMR “was the final straw...

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He’s very beautiful to look at, like a lot of autistic children are. And I suppose I look at him and think, why? You know, what’s, what’s happened? And I can understand why my daughter still has a bit question mark in her head about the MMR. Now I’ve read lots of research about it, and I know that everybody says it’s, it’s not responsible, but I’m still not completely convinced that for certain children, and there might only be the most miniscule proportion of children in the entire world but that to him the MMR was the final straw for his body. And I’m not saying that for other children of course it’s perfectly alright and they endure it and they’re fine and it doesn’t have any effect on them. But we are complex organisms and who’s to say that for him this wasn’t an assault too many. And so you’ll never ever quite convince me that for him, the MMR wasn’t just the last straw for his body.
 
I think he probably had autistic traits. I think he probably has got some genetic thing going on, and I think that because there are some traits running down, certainly the one side of the family, but never manifested before. There’s no history of autism in our family anywhere. I suppose… so I had those issues. 
 
I also had these issues about in the [area] here where we live, there are huge numbers of autistic children. What’s that about? Because this is an extraordinary phenomenon going on here. Now, is it that the genetics of parents who produce these children can get jobs which they wouldn’t have got years ago, but they can do these jobs, high functioning Asperger's, high functioning autistics. They’re working in the computer industry. They’re terribly solitary. They can work without too many people around them. Do those kinds of jobs of which there are plenty in this area, is that what’s driving it? Or is there something environmental going on? 
 
And the rate of autism increase seems so huge to me that it seems to defy a normal genetic problem. It’s just too many. It just doesn’t make any sense. I’ve got lots of questions in my head, coming out from relating to him.
 
 

Helen is careful to stand by the decisions her daughter makes about her grandson.

Helen is careful to stand by the decisions her daughter makes about her grandson.

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But I’m very careful, I try to be very careful, I’m sure I don’t get it right all the time. I try to be careful that, you know, she is his mum. She makes the decisions. I will honour the decisions she makes. I will stand by her decisions she makes. It’s not my job to make decisions. If she asks for my advice I might not give it as straight advice because of my counselling background. I might say, “Okay. Well what have you thought?” “Well you could look at it this way.” “You might want to look at that way.” I try not to, apart from, you know, what about the school? And it was just so obviously beautiful I mean, you know, well if he was mine I’d send him here. But she asked me a direct question which required direct answer in that case. So I think I try to be conscious of my role. Trying to be conscious of the boundaries where they are, I’m a grandmother. Try and be as helpful as I can be. I’m not as available as perhaps she’d like me to be, because I work. 
 
And what, other things do you see as your role?
 
What are the things I see as my role? Well I do things like babysitting. When I had slightly more income than I have now, personal income. I would go and buy, you know, clothes for the grandchildren. I really loved doing it and that would be fun. I see my role as being somebody to play with the children, somebody to support my daughter and her husband. I’m a sounding board if they want to say things, or chew the fat. I’m a researcher. I’m a great researcher. When we were coming up to Tribunal I was ferreting around. I found some significant, I found a significant piece of stuff, I can’t, which we took to Tribunal and was very helpful in shaping the Tribunal decision. So I was, and when she’s had other fights with bits of the local authority or medical people or whatever, and I will say to her, “I’ll draft you some letters” ...because she hasn’t got the time... “I’ll draft you letters. I’ll send them down as email attachments, you can then shape them up and make them your own. But I’ll do the donkey work of drafting the letters and then you can do with them what you want.” And my husband and I often do that. We often draft letters for her. Not because she can’t write them. She’s very, very capable of writing letters, but she is very time short. So we can shape it up, well draft it, she can tweak it. So we do a lot of, well we have done not so much lately, we haven’t… fortunately it hasn’t been necessary. 
 
 

Helen “adores” her grandson and “loves having cuddles with him”.

Helen “adores” her grandson and “loves having cuddles with him”.

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So in terms of my relationship with him. I adore him. I love having cuddles with him. I like going swimming with him. And we do crazy things in the pool together. I mean he’s all kitted out with lots of floats and things, because it’s, I think it’s a bit touch and go whether he’ll ever learn to swim on his own. But he loves swimming, and loves being in the water. He loves the freedom, and he can just go off on his own. He loves jumping in. But he’ll get into a routine where he jumps in, sploshes to the end of the pool, climbs up the ladder, comes out and he’ll do that repetitively, which is a very autistic thing to do. He has quite good receptive language. So he understands quite a lot of things of command. You say to him, “Go and get your shoes.” He’ll get his shoes. All sorts of things you can ask him to do and he’ll do them, and he understands, so I mean, he’s for me, one of the great mysteries. 

 

Helen’s grandson makes it very clear if he doesn’t want her in the room.

Helen’s grandson makes it very clear if he doesn’t want her in the room.

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So I like spending time with him because he’s interesting. But he can sometimes be very rejecting. He makes it quite clear what he wants and what he doesn’t and if, he loves music, so if we put music on and he doesn’t want you in the room, he makes it quite plain that you’re to get out. And I mean I don’t take that personally, I just find it quite funny really that he can just use his hand and push you out of the way. Go! It’s quite clear. 

 

Helen’s daughter feels “alone and in despair” when she is out in public and people look at her...

Helen’s daughter feels “alone and in despair” when she is out in public and people look at her...

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And I know, it’s not happened to me, because I don’t so often have him alone, but my daughter has definitely had incidents when she’s been in the shopping precinct or… I mean she told a story I think it was last year, when he was still in the pushchair, because again it was easier to get from A to B and they’d gone to the major town near here, and her husband wanted to exchange a pair of shoes or take them back. So she’d got the autistic one in the pushchair. She’d got the one who’s the middle sibling who was walking. And I think she must have had the little girl also in a pushchair. And the father walked away from the pushchair with the shoes and the autistic one went into absolute meltdown, because he didn’t understand what was happening. Daddy was walking away. Terrible, terrible scene and my daughter said, “You can’t imagine Mum how difficult it was, I’ve now got two children in a pushchair. One who is going absolutely ballistic.” And she said, “And screaming.” She said, “And then middle child is so totally distressed because of the autistic one having this major meltdown in a major shopping precinct and terribly distressed by all the people that are looking at them. And he’s saying, ‘Everybody’s looking at us mummy.’” 
 
And my daughter saying, “And everybody thinks I’m a bad mother, because at this stage, they don’t actually understand that I’ve got one who’s very disabled, sitting in the pushchair.” And she said, “And he’s frightened.” She said, “I know exactly what’s going on. Now he’s frightened, because daddy’s walking away, he can’t understand why. So what’s that all what that’s all about.” And she said, “I just want to scream at them really and say, you know, he’s suffering from autism. He’s frightened. It’ll be all right in a few minutes.” And she said, “I just feel in those contexts so alone, and so despairing and so everything.” 
 
And so she feels I think, she’s on a kind of mission to educate people about autism. So that when she, well we’ve been out and done a couple of talks together and she says to the people, “When you see a mum in a supermarket, with a child throwing a complete hissy fit, don’t assume that this is bad parenting. Actually step back in your mind and think actually this child may have a disability and this poor mum is … and perhaps what you could do is go and approach them and say, “Is there anything I can do to help you?” Because that might be the nicest thing that you could do.”
 
 

Helen and her family have “embraced autism” and have become very involved in local organisations,...

Helen and her family have “embraced autism” and have become very involved in local organisations,...

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So that’s, he lights up our life and we see life differently because of him. We’ve become very autistic aware, which we wouldn’t have done before. Maybe because of him we have rocked the boat, in the local authority with that awful paediatrician with a group of professionals, and who knows where those messages get, because if they start to treat people better because of what we’ve done then that hopefully might have a ripple effect. We’ve become involved in all sorts of autistic things. We go to Camp Mohawk, which is a fantastic facility, out, away from here, but in Wargrave. We’ve raised money for autism. We’ve gone on walks and done all manner of things, because of autism, and we’ll go on doing that for probably for the rest of our lives. I suppose if our child had had cancer or I don’t know, you know, asthma or something we might have espoused those causes. We haven’t. We’ve embraced autism. We’re not afraid of it. We’re not ashamed of it. We will go on fighting for our grandson and all the other children who don’t have such articulate parents and grandparents as we have been blessed to be.
 
And how would you summarise your experience of your grandchil
[Laughs] Oh gosh. How would I? Well I think that song by Cat Stevens, Yusuf is probably sums it up for me. There’s been the... rainbow, there’s been the rain. There’s been the sunshine and the spring. There is the heartache. There is the glorious moments when he does something wonderful that you don’t expect, like the hug you weren’t expecting, like the bye, bye at the end of a visit you weren’t expecting. It’s, those are the things that make us smile, and keep us going really.
 
 

Helen would have liked the opportunity to share experiences when her grandson was first diagnosed.

Helen would have liked the opportunity to share experiences when her grandson was first diagnosed.

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I guess it may have been helpful, that at the front end of all this, if there had been a website or a group. I don’t know that I would have wanted it for very long, that I could have gone to, and talked about what it felt like for me being the Grandma, and watching my daughter and her husband suffer, and looking at my little grandson suffer, as I think it is a suffering really. That might have been helpful, but I can’t imagine I’d have been wanting to, you know, month after, but others might have. Excuse me, I must just rub my eyes, because they feel a bit dry. So for me, because I’m a reader and I access stuff and go hunting around. I mean if anybody in the family gets a kind of weird illness then I just go and check it out on the internet and have a look and see what its, you know, what does this mean, and what are the symptoms and what’s the cure. And you know … 
 
And I would, so that’s the kind of person I am. So I suppose I found my own way through it, but to have had a group that I could have gone to, maybe two or three once, a month for two or three sessions where people might have said, “Yeah, it does look pretty bleak when a child is two and a half. It looks appalling, but actually, you know, you will get to a point where it isn’t all great but you will accommodate it and there are fun aspects to this, and it’s not all gloom and doom and you, there’ll be great moments of laughter and you know…” If people who lived with it had said, could have shared their experience and said, it wasn’t all so dreadful because that November was just the pits.
 
 

Helen would like health professionals to be more empathetic with parents, and not focus solely on...

Helen would like health professionals to be more empathetic with parents, and not focus solely on...

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And would you have a message to health professionals. I know you didn’t have a good experience?
 
Yes, if you don’t like parents and children you shouldn’t be in the job. That would be number one.
 
Yes.
 
Two is a bit of empathy about when you’re going to give, give people terrible news about their children, life limit… I mean either because they’ve life limiting diseases like cancer, or life, in a way life limiting conditions, like autism. They should be as a bare minimum a counselling support sitting there waiting to pick them up on the way out with tea. They might not want it, they might not want it then. But then that person should have the, maybe not, you can’t offer 24 hours, 24/7 it’s not the Samaritans, but you know, a reasonable amount of time, Monday to Friday where that person would be available. 
 
When the parents have assimilated, began to assimilate the news they could pick up the phone and say, “We’re in a terrible mess. Can we just come in and talk to you?” Or the person would go to their home. I mean just, it’s … something has to happen. You can’t do that to people. You can’t give them that news about their children. And not, and then not care for them pastorally. It’s most extraordinary encounters. I can’t imagine anything done much worse really. Except giving somebody the news that they’ve got cancer, and then just walking out the room, which is pretty much, almost what they did.
 
And also just the negative, just the negative string of stuff they said, “Oh well he can’t do this, and he can’t do that, and he can’t do the other thing.” Nobody said a single nice thing about him. If any of them had prefaced the, their story about how they’d found him with, you know, and used his name, “He’s a dear little boy, and we noticed that he could do these things. In the normal range of ability we’d expect him to be able to do those things, and it was sad that we didn’t see those things...
 
 

“There is light at the end of the tunnel, it’s a different light from the one you were expecting.”

“There is light at the end of the tunnel, it’s a different light from the one you were expecting.”

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Well if you’re listening to this and you’ve just discovered your grandchild is diagnosed and they’re still quite little, they are only may be two or three, now I’d want to say that there is a light at the, at the end of the tunnel. It’s a different kind of light from the one you might have been expecting. So it’s not that you’re suddenly going to come out and everything in the garden’s going to be great, because it isn’t. And I’d be a liar to say that that was true, but it is a bit more like somebody once said, “You thought you were going on holiday to Holland and actually find yourself in Spain. Or maybe you thought you were going to Spain and you’re actually ending up in Iceland. But you end up, you’re ending up in a, you’re on a journey to a different place. You don’t actually probably even know where the destination is. You thought you were on one kind of journey with a grandchild and it’s now not going to be quite like your fantasy, but it isn’t going to be all bad. There will be loads of laughs along the way. It will be sometimes a bumpy ride, but you start to celebrate the small things. 
 
So whereas your neurotypical grandchildren might learn to play the piano or go and play in a football team and all that’s marvellous and they learn the nine times table and you’re over the moon. Your child, grandchild might learn to eat with a teaspoon but you’ll get as a big a kick out of that as you will out of your other grandchild going to join the football team. And so you learn to celebrate the tiny achievements and they are glorious. And we have had great fun in, when we hit those little milestones. We say, “Yessss!” 
 
 

Helen feels strongly that the system needs to be challenged by parents and grandparents.

Helen feels strongly that the system needs to be challenged by parents and grandparents.

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So I think, another message for people if they listen to this, it will be don’t take the rubbish, you know, if you’re not capable of writing the kind of robust letters that need to be written, then find somebody who can. Because it’s, we have to challenge the system. We’ve got to fight for these children and we’ve got to fight for these mums and dads and, and other kinds of carers. I guess there’s lots of foster carers who are fighting the system, because their mums and dads couldn’t cope with the children or whatever. There may be grandparents who are coping with their grandchildren because their daughters and sons couldn’t cope with these children. 
 
But we have to fight the system. We’ve got to get better at this. The professionals have got to be held to account. They cannot go on treating people like this. And it’s no good if we all roll over and just say, we’re not going, we’ll put up with it. We’re afraid of rocking the boat. We need to rock the boat. We have a duty to care for these children and we have a duty to fight for them because they can’t fight for themselves.
 
 

Helen’s daughter panics almost daily about the future.

Helen’s daughter panics almost daily about the future.

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It didn’t mean we loved him any less, but it was just trying to imagine the future. And I know my daughter still panics almost daily about what does the future hold? Not while she’s around and capable. But I know that her absolute gut wrenching fear is whatever’s going to happen to him if anything happens to her and her husband? And I can’t imagine what that’s like living with that really. Although I live on the edge of that, it’s not my immediate problem. I won’t be here. When he’s say the age I am, I’ll be dead. I haven’t got to confront what’s going to happen to this little boy when he’s a man and he’s 50, 60 and 70. And they live a normal life expectancy. So there’s all of that.

 

Helen thinks that her daughter would be heartbroken if her grandson were to go into residential...

Helen thinks that her daughter would be heartbroken if her grandson were to go into residential...

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Just what does the future… I think she looks out at the future and just wonders what on earth it’s going to look like. And I suppose some parents would just say, well okay when he’s about twelve he may have to go to residential school or something and we’ll have him back for holidays. But I just don’t think that’s in my daughter’s vocabulary, emotional vocabulary. I don’t think she would contemplate that. And I think for her to, if it became apparent that that was really the only solution for them as a whole family, because the impact of the autistic one on the other two was so huge that they had to go down that route, I think it would just break her heart.
 
I think she’d be in pieces. And he adores her. He absolutely adores her. He can’t get enough of her, you know, he wraps himself round her, and she goes to him, “Cuddles.” And he comes up and he’s all like that. I mean she, there’s no way she’d want to part with him.
 
 

If Helen'’s daughter asks for something, and it’s within her capability, she will do it.

If Helen'’s daughter asks for something, and it’s within her capability, she will do it.

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And how do you see your role in terms of your daughter? What role do you play for her?
 
Oh I hope, if she was here, she’d say that I was a support for her. I’m a confidante. I adore her. That I’m passionate about being as good a Grandma as I can be, given the constraints I’ve got, the time, energy, money, physical ability and all the rest of it. I’m not, I don’t think I can still quite do enough because of those constraints. I wish I was available more. I wasn’t prepared to commit to every Friday afternoon, or every Wednesday morning doing something, because I wouldn’t want to be tied like that. Partly because I had spent a lot of time being a single parent mum myself, I didn’t really want to do it all over again with my grandchildren. Not that my daughter is a single parent, but I didn’t want to make those, that levels of commitment that I couldn’t sustain. So I’ve never promised anything I couldn’t deliver. But if I’ve got, if, if she asks me for something, and it’s within my capability, either physically, mentally, emotionally, practically, financially, or any other way you want to think about it. If I can I will.
 
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