The Film

 

You’re going to watch a film of parents telling us about their lives, their experiences of their sons and daughters leaving home.  Reflect on what you feel, what you see, what you hear and what you learn.

 

Maureen,“Where did the idea come from?”

 

Jean: I really think it was when his brother and sister started moving out and I’m sure actually someone said it was a good idea to start then because he might want to follow their example but unfortunately it didn’t turn out that way, what was it he said?

 

Robin: He just said “home’s best,” quite straight forward.

 

Jean: And couldn’t be moved from that

Robin: It was only when we got older that we decided, what would happen if we passed away? It sounds a bit morbid, but at the same time you’ve got to look at life that way and we thought, well, he’s got his centre and he’s got his home, that’s his main thing so, we really had to find somewhere else for him and it took us quite a while, it wasn’t a quick process

 

“It could have been sooner” (Marie and Stella)

 

Stella: He was offered space with three others, or two others and he didn’t want to be with other people, it was strange.

Marie: Oh right, Ryan’s the same, I don’t think, when he goes to his work, within a group, and you see the photographs, there’s the group, and then Ryan he’s always at the end, you know, with a worker. You know, I think it’s the environment there, he’s able to be part of a group but be alone, but I don’t think, everybody agreed, they didn’t think he could cope with shared living, because he needs full attention.

 

Stella: So we’ve been lucky with his job, lucky with his leaving home, so life for Douglas has been better, but it could have been sooner.

 

“He doesn’t ever express a desire not to be with us” (Shona and Claire)

 

Shona: They’re expressing a lot of feelings that I have, thinking about my son.  I think one of the big concerns that I have is he has, we are a very compact family and he really doesn’t have anyone out with us, obviously we do have a PA who works with him, but he doesn’t really have friends he always migrates to adults.  He doesn’t have friends and never really expresses that he wants to go with friends, be with friends, or be with other children so the woman talking about her child, adult, being in a group, but on his own, I could really relate to that because that really rings true although my son would want to be at the thing, in the group, he actually isn’t in the group, he’s there, but he’s not actually part of it.  And then just thinking about him ever leaving us is hard for me to visualise, although it’s not something I’m.  Obviously there’s a whole emotion around him leaving home not being with us… but and a lot of that, for me is about ‘could someone else care for him as well as I do, because he has a lot of medical needs, and he doesn’t really express his emotions, so he would be unlikely to say he was unhappy, in pain but I can read him, I can see things, so even my husband will say oh he’s fine, he’s fine.  I’ll say, no, there’s something not right, and maybe the next day he becomes ill.  I can read him, I can tell.  But he doesn’t ever express a desire not to be with us.

 

“Own front door” (Maureen and Linda)

 

Linda: I think Kim herself was perfectly happy about it because she was very keen to have her own front door, she did talk for a while about perhaps sharing a flat with somebody but in the end she was offered this one bedroom flat and she took it and I think she was a little doubtful about whether she might be lonely, but in actual fact she’s much happier on her own, because she has total control over the television, and of when she goes to bed and all of these kind of things. And I think she feels that someone else living with her might interfere with that.

 

Maureen: So it’s about sharing isn’t it, you can be in a setting with lots of people and be lonely because you’re not connected to them.

 

Linda: Yes, and she tends to, she gets company from the support workers and she does see people in the other flats as well, she goes out bowling or to the pictures or whatever with some of the residents, she’s not lonely.

 

“Little did I know, that’s not quite how it works” (Marie and Maureen)

 

Marie: I remember driving home from work, and I was going under the bridge at Dalmeny station, and I suddenly thought this was the night before the first night that he was going to be out of the house, and I’m not a very sentimental person, but I can remember quite clearly, I remember the position of the car, where I was, and I was going to collect Ryan from the carer she used to keep him for two hours in the afternoon, and I thought “I’ve lost my baby” and I couldn’t believe that I said that, or I’d thought that.

 

Maureen: How old was he at the time?

 

Marie: He’s thirty eight just now, and that was thirteen years, so he would have been twenty five, and I can remember that quite clearly.  And I thought that was going to be the last night that I would have him, little did I know that, that’s not how it works.

 

“The best thing you could have done” (Maureen and Linda)

 

Linda: I know my mother-in-law, in particular, although she didn’t really say very much at the time, but later, she said to me ‘ I just couldn’t believe that you were sending that poor girl off to college, and then making her go and live by herself’ she said I just thought ‘that poor child, that’s dreadful’ but she said, but now I think it’s the best thing you could have done and Kim is just so happy and she’s done so well, and she said I just think it is wonderful.

 

“They’ve have their own live to live” (Maureen and Linda)

 

Linda: She has a brother and sister, they see a lot of her, not as much as I do probably, but they are very involved with her, but I always said after Kim was born, I always said that I would not want them to feel responsible for Kim.  I would hope that they would always stay in touch with her, and they would always be looking after her interests but I would hate to think that they felt that they were responsible for her and had to have her to live with them, or anything like that, I just wouldn’t want that. I feel, they have their own lives to live, and they have to be free to get on and do what they need to do.

 

“Her own life without us” (Maureen and Linda)

 

Maureen: What would you say to younger parents at this point, whose sons or daughters are still at school, and there’s a fear factor of ‘what next?’ What sort of things would you say to them about preparing for that move?

 

Linda: Well I think they have to think about it themselves, when I was working I used to always say to parents, what you’re aiming for is independence, that’s what you want for all your children, you want them to be independent, and you have to aim for that.  I just think, for their peace of mind as well as their child’s wellbeing. I think the thing to do is to have them living away from home. I feel so much happier that Kim has got somewhere and know lots of people and has her own life without us and although I’m sure that she’ll still be very upset when anything does happen to us at least there are people there who she knows and can carry on with her life without there being some huge change.

 

“I’ve learned so much…” (Nadine and Claire)

 

Nadine: Well, I feel it’s always important to listen to other parents I’ve learned so much from speaking to people who are at the same stage journey that I am but also a huge amount from people who are further along that journey.  Because I think, obviously everybody’s different and unique, but you know, it’s similar in lots of ways so I do think you can learn a huge amount. It’s positive in some ways to listen to people who are further along the line, and know that’s ok. It maybe is a difficult journey to get to that point but, it can be very positive as well.

 

“Real friendships and real connections” (Hels and Maureen)

 

Maureen: I was thinking about, how old is that older carers group, how long have we had that older carers group?

 

Hels: I think the carers group has been going about twenty two, twenty three years, so it was one of the very first things we did at EDG actually, was get the carers group together.  I think even then, they were called the older carers group, but probably they were carers in their fifties, sixties, maybe some in their seventies.

 

Maureen: And there’s some real friendships there, isn’t there?

 

Hels: Oh yes, real friendships and some real connections there, they often talk about it as being, you know, they’ve all got something in common.  You know, they don’t have to be great friends but there’s a real connection there because they’ve all got the same lived experience I suppose.

 

“Being able to bounce ideas off people...” (Nadine and Claire)

 

Nadine: I think that’s good at any stage, you know whether , if you’ve got a young child or an old one, because I’m sure, although again, you probably had a very different situation, you’re still experiencing similar things and it’s nice to be with people at any stage who kind of understand that and have support of that and I suppose, particularly as you get older, because, friends that you’ve had when your children have been younger, although your children are perhaps different, you know, you’re still having similar experiences and stuff, but obviously when you get much older.  I think would be a really positive thing.  I think that’s great at any stage really.

 

“My life as I want it” (Hels and Frances)

 

Hels: and how did you feel about wanting to live by yourself, was it something you wanted for yourself?

 

Frances: Well, it wasn’t originally planned but now it did feel I can run my life to what I want it. I remember saying to mum, I wanted to go through to the station ‘oh you’re not travelling on the train, because you can’t do it.’ I said, well I’ll never learn unless I do it.  So I said, ‘I want to go and get a ticket for Peter Morrison at Falkirk and I want to go through on my own mum.  I’ve got to try’ mum wasn’t keen, but I did it, and I felt really good on it.

 

Hels: So that was the start of your independence really, of doing things by yourself?

 

Frances: Of doing that bit anyway, yes.

 

“What’s best for her, and not what’s best for you” (Nadine and Claire)

 

Nadine: Right up  until a couple of years ago, I always just assumed that when she left school that would be it, She would come home , she would stay with me and, you know, life would have to change accordingly. But I think certainly since I’ve seen how much she enjoys having a little bit of independence and being away from me and being at Respite, and how positive and beneficial that is, her being with her peers. That has started to shift in me a little bit.  I don’t know if I could ever get to the point that I could let her go completely but I guess it’s about thinking, ultimately, what’s best for her and not what’s best for you anymore.  Is that better for her to be with people who can give her all the energy she needs because obviously you’re more tired.  You know, she loves hearing other people, she likes lots of activity and stuff and I do think she does get a bit lonely at home being an only one, you know, it’s difficult.  But I think it would worry me, you know obviously, listening to some of those older parents and thinking that I would still be caring at the level that I’m caring at now, when I’m their age, because, I don’t think that’d be any good for me and I don’t think that’d be any good for Jess either.

 

“We will really have to prepare him” (Shona and Claire)

 

Shona: So where can I, in my mind, I’m saying to myself, when he’s ready to leave us, that’ll happen. So if he starts saying ‘ I want to go and be in a flat with… a, b, and c, I would kind of jump on that, but I can’t ever visualise him ever saying that to me, and the man saying about ‘ home is best.’

I could just so relate to him saying that because my son just doesn’t visualise… I think his train of thought, because of his learning disability is such he doesn’t visualise or think about …you know, he can’t see that. It’s just the world he is in now, he can’t picture any other world. So that’s for me, where I think, you know, how will that come about? I can’t ever see me … and again… the woman talking about ‘  you have to make them independent’ and obviously, we’re taking steps to do that but half of that has to be, your child wants to be independent, and some of it, you know, he doesn’t want to, ‘ it’s really good if my mum does everything for me you know’ why do I need to pull my trousers up because if I just stand there, and put my hands on her shoulders, she’ll pull them up for me’ you know? Or, ‘if I wait long enough… she’ll do it for me.’ Yes, so for me it’s really hard to… my worry is that it’ll come as a crisis, you know, my husband is much older than me, so in the back of my mind, and we’ve discussed it, that I’m going to be on my own with my son, and then I think well, what if something suddenly happens to me? You know, so it’s not old age, it’s the  heart, something like that, you know something suddenly happens? It would be as a result of a crisis that he would then become independent, and that’s frightening for me because I think the way my son is, we’ll have to prepare him.  But I just can’t visualise how that’s going to be, you know, having self-directed support that we do now I went down that route and have employed, well actually two PA’s who work with him with the basis that he would then be with someone else and not us, going out for a few hours, to get him less attached to us, so that’s the first step.  But it’s hard for me to see what the next step is, how we expand that o get to the point where he could be living independently.

 

“Down the line” (Nadine and Claire)

 

Nadine: Because you don’t often get a chance to speak, well I’ve never, spoken to really, parents that have children that are much older, so that’s really interesting for me to hear, that  are maybe twenty, thirty years down the line, because you tend to just, obviously, know people who are just roughly around the same age.  But even then, because of the nature of your child being taken to school and being brought back form school, you don’t get a chance to speak to people.

 

Claire: Yes, we don’t get any of that school gates stuff do we?

 

Nadine: No, an certainly not with people who are much further down the line than you are either, so I think that’s incredibly helpful

 

“It’s me that has to start it” (Shona and Claire)

 

Shona: I really got a lot out of listening to these people today, obviously it’s very emotional for me, because it takes me down a road I don’t necessarily want to go and I really relate to it, but it does really help me, help me to see, and I know, it’s the right thing for him, and it’s going to have to happen, but it’s really helped me because there’s a lot of positives in there, it’s made me think about when that’s going to be because in my mind I’ve always thought it was going to be when Gregor would tell us, when he would start voicing that he wants to be away from us but now I know it’s actually me that has to start that road, that path for us, by talking to him about it. It’s not given me any clear understanding of when that’s going to be because I don’t think I’m every going to get that from anywhere except us as a family but I’ve found it really good to hear it, because of everybody we’ve spoken to, it wasn’t about the death of a parent which is my biggest fear, that it’ll happen to him because one of us, or both of us die, which is too severe for him to deal with and for me to think about and then you know, I don’t think it was ever plain sailing, they had to follow a process, and it maybe took time, but to know that it worked eventually young people, their adults that were going home from home, were all different.

 

“It’s for the bigger picture” (Shona and Claire)

 

Shona: I think even when your child starts school it’s a big transition, but you also know in the back of your mind that that is only for a period of their lives.  When now for me this next part, and I’m not saying when he does leave home, that’ll be his home for life, I mean I like to think it would be for him, because it’ll be hard for him if it isn’t but you know that this next bit is for the bigger picture, it’s for a long, long time.