Bryan’ Well I was just going to say that. In a curious, in a curious way, as we have grown to accept [Grandson] for what he is and so on, we’re less and less inclined to wish for a magic bullet you know. More and more content with the way he really is. I wish it weren’t so painful for him.

Moira’ If we could find ways to make it easier for him or to be sure that he was happier in what he can do and can’t do. If somebody could certainly find, not a job, because I don’t think he’d ever hold down a job, but something that he can do that he’d get satisfaction from, it would be nice.

Lucy’ Well I suppose, no, I was going to say I suspect we used to get, we probably would have got angry with [name], but I don’t think so, because we knew he, he couldn’t stop himself from doing it. It wasn’t a deliberate, I kind of, I assumed it was just his way, just his way of telling her to stop doing it. Whatever it was she was doing. Whereas I say other children would just say wouldn’t they, don’t want my coat on I don’t want my nappy changed And because he hadn’t got the words, he did it with his mouth and he used to scratch as well didn’t he? We worried for her.

Brian’ Oh yeah.

Lucy’ We really did.

Brian’ As he was getting bigger and stronger.

Lucy’ Yes.

Brian’ We did worry about her.

Lucy’ Yes, yes. It was… there again it seemed to be something we couldn’t do anything about soso frustrating.

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 brothwhen 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.

So how does it make you feel to know that your daughter is living with this?

it’s upsetting because you know, nobody wants to see your own child, you know, upset, and there’s odd times when I phone and I can tell by her voice if she’s up or she’s down. And also I suppose living with her MS is worrying, because you don’t know in the next ten years what her state will be, and also that [name] will still be reliant on her, because he’s only being to be 16, 17 then. So, I suppose you worry about what the future holds for her and for him, and I don’t like to see my children upset which is why I try to give as much support as I can, and you know, offload sometimes and take him off with me, and spend time with him, so it gives her a break.

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 girls 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.

There is a place where they can go in the secondary school, which is good. There is a games club every dinner hour and some of the more geeky children do go to it, and the children who can’t bear the playground. But Edward loves the playground. He likes. He loves football. He’s very sporty, he’s good at sport. He wants to be there. He wants to be part of things. He wants to be in with the other boys, but they don’t always want him. He in fact told us, that they were asked when they left their primary school how people would remember them there, and he said, They’ll remember that I was weir, which is sad really.

What would you say your main worries are for your grandson?

The other children not liking him. That hurts me. You know, when I’ve read little bits about how he will sit on own, and if children get to realise what he’s like that he could lash out at them. I don’t like the thought of him being an outcast. I want him to be accepted and be just the same as, you know, them. So that worries me. But I worry sometimes about what’s in his head. What he’s thinking when heyou know, or does he really understand when he’s having one of these temper tantrums. When you talk to him, just as a person, if he comes into the room now, he would be very precise with you. So he would hold a conversation, but I suppose you do worry. You know, I worry when he’s not with me and I think, well what’s he thinking, but then I suppose I have so much contact why I have to phone and just have a little conversation. Just to let him know that you know, tell him I love all the time. He’s always told he’s loved.

But it’s very, very hard if you’re a grandparent where you’ve got one family where the children haven’t got any kinds of difficulties and another one that has. And you know that you’re a main support source for that family, then suddenly getting it in the neck out of nowhere from another own child of yours saying, Oh it’s all right because they’ve got difficulties. You’re not there for me. I could do with a bit of help sometimes, but do I figure in it You know, and they come out with these things.

And then you know you feel consumed with guilt and you think, Well I’m sure I have helped them. I’m sure that I’ve tried to balance it all ou. But sometimes how it’s perceived isn’t how you might come across. Do you know what I mean? That’s incredibly difficult. And when they share stories like that I feel really sorry, you know, and sometimes it takes another mum in our generation of mums to understand where that other grandmother, a mother in this situation is coming from.