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.

And how would you tell another grandparent what it was like to be the grandmother of a child like him?

Oh I suppose again, depending on the relationship they had with their grandchild, just to remember that it’s not him being naughty or horrible, and what he says he doesn’t mean it. Just accept him that there is something wrong that is making him like this. And I think to anybody I think it’s just understanding that he’s not doing this to hurt you or personally. He can’t help the way he is and I think you know, as he gets older, hopefully what’s put in place is for him to learn how to control that as well. So that’s all I can say to grandparents, you know, go along with it, see how it is, and you know, perhaps get some help and advice on how to handle different situations. And I don’t think, you know, you could always say this is how I did it and this is how it all worked because they’re two different children aren’t they, so it wasn’t always what’s one suits the other. I don’t think it will ever be the same.

What about the future. Do you ever think about the future?

Because there’s a lot going on in my life at the moment, I suppose I do worry about his future. What life will be like for him. I worry about my daughter, because, I don’t know what she’s going to be like in ten years time. I very much, you know, I might have a little ponder on think oh what will he be like, you know, will he go to college, will he, you know, go on to university?’ But then I see students here and I see that they can. Probably what I would say is, not so much looking at the future, but because I’ve seen students here progress, it gives me hope that as he gets older, he will learn how to cope with this better and he will be in mainstream life not be classed as special needs or anything like that. That bit hurts to think of him being special needs, but in my eyes he’s special to me.

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.

Okay and how did you feel whenever you heard about his diagnosis?

Sad. [laughs] [tears in voice] I think for anybody, you know, if you see him, and know what he’s like, to actually know and read the report about, how he prefers adult contact, how he struggles to make relationships with other children, especially boys is sad, it is sad. And the fact that he started school with my other granddaughter from my, with my other daughter, his reliance on her, to be the one, you’d say he was the most confident but and she wasn’t, but he’d want to play with her and he hang in and want to be with her friends. So those sort of things are sad. And whereas we always thought he was quite bright, they, he’s been diagnosed as just being average.

But I mean his reading is above and beyond, you know, he has free reading, because he can read any words, but it’s the understanding of them. So, those sort of things. But you know, when you talk to him and what you get back, yes, it is upsetting to know that there is something wrong, and that’s with him for the rest of his life. So I do find that hard.

I said do you worry for your daughter’s future?

Yes. I do worry for her, and I know that, something was mentioned about respite for her, and although she said to me, Although it would be nice to think I could have a weekend to myself Her worry would be that he would go to somebody and they wouldn’t treat him nicely. So she’s obviously concerned about if she lets him out of her control, what if he kicks off with somebody, what if he hurts somebody else? And what if he wasn’t treated nicely? You know, you hear all sorts of horrible tales don’t you? So I suppose when he’s with me it’s probably one of her times when she’s t her most easiest or relaxed, because she knows how I am with him and knows that I will cope with him, whatever happens. Although she will phone and say, Has he been all right And I can hear this worry in her voice, is he okay? Has he been all right? Yes, he’s been fine. He’s okay And I will tell if he has a funny little moment, but I think I’m quite lucky that I get the better sort of times with him, but then and probably because it’s the novelty, it’s the nice thing to come to nanny isn’t it, I’m not the person you’re with every day, you know day in, day out.

And what would you say is your role?

My role?…Just to be there, when they want me. Sometimes, I can’t always be there, and I don’t want to sort of feel that I’m being put upon, but just to be there for them and try and support, and make his life as happy as I can. You know, that’s what I like, all my grandchildren to be happy. And if he’s happy, then I’m happy, you know, and when you see his little face and he’s all smiles when he sees you. it’s hard to explain. You just, you know, you just love him, everybody loves him. And his teachers said he’s such a sweetheart.

What are the best things about him?

Oh. I think… it’s his smile. He smiles as soon as he sees you. it’s his love, and his way, you know, he’s, when he talks to you, the funny little things he says. He doesn’t understand jokes, but he likes to make his own jokes up, and I think it’s just what I get back from him. You know, if I tell you something, it does make me have a lump in my throat, but [name] has to find ways of loving me more. So he came over one day and he said, I love you, up into outer space and round the planet and back twice And I went, That is a lot of love. And I love you as well loads So the next time he saw me, I love you up into outer space and back twice zigzagging because he’s found a little bit more So I always say, And I love you that as well. it’s lovely And the next morning he said, I do love you nanny And I said, I know And he said, Well I’ve been considering this He said, And the more I see you, the more I love you And this was from a 5 year old. And what else can you say when you’ve got a child who gives you all that – sorry – but you love him, [laughs] you know, that’s [name] is, such a loving child, you know, and there’s just this little bit with him. But on the whole he’sit’s the love I think, you know, and this happy little soul that he is. That’s all I can see about [name]. You’d have to see him to understand him [laughs].