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.

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.

I suppose that in terms of doing things with them at home, they’re interesting in as much as they’re quite self contained little chaps. They can go and bounce on the trampoline for an hour, an hour and half, two hours. They can run about in the garden, pulling the twigs off the hedge. And you, in a sense, you don’t have to do a lot. And it was something I used to struggle with to start with to start with, because I used to think I ought to be doing more. I ought to be sitting down and teaching them A, B, C or reading books. they’re not very keen on reading books. So it’s actually quite hard to get them to sit on your laps and do things. They, their concentration is very limited, so, you can, you can do activities with them. I tend to more activities when I’m there with my daughter and I may be helping.

I do a lot of textiles and craft work and I know that my daughter’s going to have a go at, there’s some kind of felt making that you can do. So she’ll get me along to help doing that kind of thing, because I know a bit more about it than she does. Andbut on the whole you don’t have to do that much with them, other than the fact that you have to keep them safe, and keeping them safe is quite a big issue, because you need to know exactly where they are really all of the time. And you need to be clear that they’re not in the kitchen, the bathroom or the sitting room. Or likely to, you know, you need to be sure that the gates are shut in the garden and they’re not going to escape. You need to be sure that one of them is not climbing on the wrong side of the banisters, and hanging off the sort of top of the stair rails.

So there are things like that, which I think, that, in a way those are the harder things to manage. they’re also both doubly incontinent still. So you spend quite a lot of time dealing with that when you look after them. Their diets are quite limited. But they, they do talk to you in their own way, and they use what in this county we call total communication, but it’s similar to Makaton. So they use some of that. Not a huge amount, but they do use some, and they use the photographs. They use PECS, the little photographs and symbols, and they’re very good with them. So they spend a lot of time giving you pictures of breadsticks or crisps or whatever it is they fancy at that moment.

And whenever you have them, whenever you’re minding them what kind of things do you do together?

We do [grandson]’s very keen on jigsaws and any kind of games he likes. He likes draughts and any other game that you can dish up. [Granddaughter], I suppose has always played these games. It is, it does grieve us a bit that she doesn’t want to join in with these kind of games. She did as a little, as a little one. I suppose we used to make her and now, we do feel we have to respect her choices in these things. I mean, she may not, act like a fourteen year old, but she is now fourteen and you, you can’t have the same expectations as you did for the five or six or even seven or eight year old that she would come and join in family games round the table. She quite enjoys them when on the rare occasions when she does do it, but she doesn’t choose to do it.

She’ll sometimes come and read to us. She, she loves, she loves reading to us in all sorts of different voices, and dramatising, dramatising the voices. I suppose we’ve always read to her, I mean they’ve both been read to since they were very, very small, and of course one exaggerates the voices and dramatises the story and she loves doing that. And I think it’s very good that she does read, she reads to other children. Not only at her special school, but she reads to other children at she goes one night a fortnight to respite to aand there are obviously other disabled children there and she apparently reads to them.

Brian’ Because of the way he is, and his set routine. I mean you know, that’s the main thing, is his set routine. And anything that changes that routine, this goes wrong and he just can’t cope with it.

Lucy’ Hm.

Brian’ When we go to see him, we’re lucky if we see him for about three or four minutes, because once we’ve said our hellos, he’s gone. He goes up to upstairs. And there he’ll stay until we leave.

Lucy’ don’t forget your bag.

Brian’ We’ve even, he’ll even come down, half way down the stairs to see if we’re leaving yet because we’re not part of his immediate

Lucy’ Well we areexcuse me, but we are part of his Saturday, we always go on a Saturday afternoon. We are part of Saturday’s routine. So we arrived about three and we always have to arrive with a bag with some a

Brian’ Presents.

Lucy’ A couple of books or something wrapped up, and he sees us coming through the window and gets all excited, laughing and smiling, and sitting down and waiting and the minute the door’s opened, if we chat, like you do don’t you when you’re in the hallway. You can hear from, from the sitting room, you can hear, Mm. Mm. Mm Where, you know, what about me?’ Sort of thing. So we have to take the bag in. He tolerates us there while he’s opening the presents, then he goes upstairs to his bedroom. And then as Brian’s just said, after a few minutes. We stay for a cup of tea, he knows we have a cup of tea, and then he will keep coming up and down the stairs.

I know now what to do, to retreat and sometimes they just want to be on their own. And let them, let them get on with it really. But it’s not very nice, and then it’s quite distressing and certainly one of them has big crying fits and it’s very hard to understand what’s the matter with him, and it’s difficult to intervene, whereas normally, it’s a child you would pick up and put on your lap, you can’t get anywhere with that at all. So he’s just lying on his mattress in his room, because they have very bare rooms, because otherwise they’d just destroy it all. So he just lies here and weeps really, and sort of late at night that’s quite hard I think.

Bryan’ it’s interesting actually that that first started when he was quite a lot younger, I think in his earlier teens. We found that he would very frequently repeat back a phrase that somebody else had used, maybe as much as ten or fifteen minutes early, earlier, and not in context. And it took us a little while, it took me a little while anyway, to understand this was his attempt to relate to a conversation that had moved on, which he really wasn’t following. But he wanted to. He really did want to be involved and was finding it difficult and the only way to do it was to say well Bloggin’s said that and people laughed so if I say it, maybe they’ll laugh again and I’ll be included. And it was that sort of almost parroting something that had happened, that he was striving for inclusion and couldn’t understand when it didn’t work. And I suppose I took me a little while to realise that was what it was, and not to simply say, Oh that’s silly And give an inappropriate reaction which I tended to do, which was wrong of me. And I recognise it, but there you go. One reacted as one felt at the time. He has always struggled to be included. Sometimes he makes it and sometimes he really completely doesn’t. And he struggles with it, constantly. But it’s not a wish not to engage. it’s inability somehow to engage.

Last year I had a significant birthday and so did my husband, he’s younger than me, but it was a significant birthday and there’s no way I’m going to separate a party, a family party, or an extended friends without having my boys, because they’re the apple of my eye and the delight of my heart. So we had to plan things very carefully. And I knew that they’d need, the boys would need their own spaces, their familiar spaces indoors. So we planned an outside party, which meant we had to have it away from our actual birthdays because we had to have it in the summer, and pray the weather was nice.

But it took an, not just the normal sort of thing of arranging the food and arranging the putting up of gazebo, party gazebo and all those things, and making sure you know whos coming. But it was warning the family that if the children were in the special places it meant that they’d had enough and that they weren’t to be approached, you know, even though auntie or uncle or brother or sister or whatever might want to, that they’d taken themselves away. And then I had to broach it with the boys and sort of almost get their consent. Now look Grandma really, really and Grandpa really would like to have family down, and we want to have music. And now we know that you don’t like music on, but we’ll have it in the garden andrdquo; We found sort of giving them ownership of it helped because of this control thing. So what do you think it would be nice for Grandma to have at her party What do we like to have at parties You know, and then involving them. So choosing even the serviettes or choosing the balloons. Can you come round and help Grandma put up the tent so you can see how big it is? You’ll be such a big boy, you know, you can give grandpa the pegs and we can put it in sordquo; And actually, it worked.

I mean it was a big gamble because it might not have worked, because other family events I’ve had, even when I’ve had barbecues in the garden, people have come through this space, through to go to the toilet even, and my grandson has said, Hello, hello. Outside. You go in the garden please. You go in the garden please. Outside. Outside in the garden. And I didn’t know how it would work, but giving them the ownership and giving them the right to not have to join in if they didn’t want to. If they wanted just to be on the computer or on the Wii or whatever, fine. This is their space, their upstairs rooms. They’ve got rooms here that they see as their bedrooms. Do you know what I mean?[inhales].

It just took a lot of organisation and it paid off on the day and it was absolutely brilliant. And I couldn’t believe the sort of other side of my grandson, the social side. He decidedof course he had to boss everybody, he had to tell, Oh the candle in lantern’s gone out in the tree. It needs to be lit He had to be in command but it was a kind of social side of him.