His former respite centre, Heller House, was good in some ways but not so good in other ways.

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1 Cian: My brother and I both have autism, but, it s a bit more complicated than that. As you may know, autism is a wide range spectrum condition and there are different degrees of it. I m at the very able end of autism, which is Asperger s syndrome. My brother, on the other hand, he is on the very profound end of the spectrum, and he can t talk and he finds life very difficult. Because of that, we have to show him pictures; he has text to help him communicate. Does everyone know what they are? Good, good, good. His former respite centre, Heller House, was good in some ways but not so good in other ways. Alison: That was child services. Cian: That was when he was in child services. This was when he was under 18. Alison: He s eighteen, now. He s coming up to nineteen. Cian: Yeah, he s almost nineteen, yeah. The used to put him to bed ridiculously early, at 9 o clock, and that s far too early, and he used to not sleep, and he would make loads of mess. And by mess, I m not going to spell it out because that wouldn t be fair to him, but I think you all can guess what I mean by mess, it s not nice at all. Alison: It was quite big and noisy, wasn t it? Cian: It was quite big and noisy. And he often would get in to a late routine because of it, because he wasn t used to going to bed early, so he would just be up and awake and keeping everyone awake there. Also, now this really upsets us deeply, but, one time he attacked a member of staff at Heller House, and they didn t tell us which was really, really bad of them. My mum and I were out shopping and he attacked us both, and he almost very seriously

2 injured my mum and pushed her to the ground, it was very horrible. We would have been a lot more wary and careful if we had known that he had attacked a member of staff the other day, and it was really bad of them not to tell us. Alison: He actually hadn t slept very well the night before and he also lashed out, and none of this was communicated to us. I actually said to Cian Can you go and get a pint of milk from the shop? and he said Oh no, let s go in the car. So we went in the car; there was no way I would have taken Connor out shopping if I had known he was really tired and hadn t slept, and especially after there had been an incident. So, unfortunately, there was very bad communication at that time. Cian: Yeah, with the staff and the parents, which is very bad. Alison: It was a bit unfortunate that when we were in Tesco we walked right past the cake stall to the milk, and I think that s what upset Connor. We obviously weren t stopping to get jam tarts, so he pushed me in to the milk, you know the metal things that they have? Crates. I fell to the ground, that was a real, real low point, wasn t it? Cian: Yeah it was. He pushed me too, but I didn t fall to the ground, luckily enough. Alison: You re a bit too big. Cian: Bit too big. But it was still scary, you know. Also, he is now nearly nineteen and he s at an adult service respite centre. Now, it s only really luck that he s there, because we didn t find out through child services at all, we just happened to find out through another parent. If it wasn t for that we could easily be basically left with, well actually, literally left with nothing. So it just goes to show that there needs to be a bigger connection with the adult

3 services and the child services. It shouldn t be, once he s finished being a child, that s it, you know, the child services are no longer helping, we ve done our bit. They should support parents to help their child move on to adult services, because it s not easy, you know, it was only luck that we found it out through a parent, it could have very easily not have happened. And I would like to say that he s doing very well at this new place. It s a lot quieter than the child service respite centre. There s one particular member of staff who he gets on very well with, and also they re quite a bit more organised, would you agree? Alison: Yes. Cian: In many ways, yeah. Alison: He s had a good transition to adult services. Cian: And form what I know, they don t seem to put him to bed early like they did before. Because I ve noticed he hasn t been feeling so Alison: The really good thing is that they ll take him for a walk every evening to help him wind down. Cian: Which is just what he needs. Alison: And that wouldn t be happening in children s services, because one time they took him out for a walk and he hit one of the carers, and so they stopped taking him for walks. Cian: That s really, really bad, because, you know, he sometimes hits me and mum but we don t say Oh, we re just gonna leave Connor. As much as sometimes we d quite like to, we can t. I m glad you can see the light of our darkness, thank you. Basically, you know, if one person can t mind Connor, they should find someone else to do it. You

4 know, he s hit one member of staff, they should get another member of staff, that really is pretty poor and unprofessional; You ve hit somebody, we re not going to do anymore. They ve got to help us, you know, they ve got to really think about why they re doing their job, to help parents, all these respite centres. Alison: And what the hitting was about, was that it was obviously some kind of communication. Maybe he didn t like where he was going. Cian: The problem is he can t say, and he doesn t understand it, you don t hit people in life. That s his way of dealing with things, sadly. Alison: What did I want to say? He had a really good transition to Haymill s, I found that the staff really listened to me. And valued what I had to say, as the expert of my own child. So, that was good. We soon built up good relationships with staff. What do you think Connor likes about Haymills, Cian? Cian: I think he likes, I think they take him out on trips a lot, so he s often, you know, quite tired and relaxed. Also, it s a smaller place, which I think helps. Alison: It s quite homely, isn t it? Cian: Yeah, it s very relaxing. I also think Alison: Another thing that s been helpful with transitioning has been the network meetings that we have every month that get everyone together. We have a fantastic case coordinator, Sarah Layman (?), who s absolutely brilliant. We ve got the people from Certitude, and somebody from school. Connor s going to be leaving school in July. He s going on to a special needs college in September. We ve had people from the college come in, as well. And those meetings really help to find out any problems before they really take over.

5 Cian: Yeah. Alison: And that s really it, I think, apart form to say that sometime in the future, I won t be able to have Connor at home all the time, because I ll be too old and infirm myself. It s very stressful having someone with very complex needs. Cian: Sorry to butt in, but us having to look after my brother, it really does affect the whole entire family, really. Me, my mum, my brother himself, of course, and also dad, me and Connor s dad. It affects mum because she has to look after Connor, it affects me because I also have to help my mum look after Conner, and also I have some issues myself that need solving, but they can t be helped when we ve got to look after Connor. It doesn t leave much time to sort out my issues. Also, it affects Dad, because he lives in Ireland, and he has to go back and forth to help us look after Connor, sometimes. So it affects the whole family, and it makes life very stressful for everyone, really. That s why these respite centres are very vital and important and essential. People do really need to realise that, you know, one day my mum will be too old to look after Connor. Alison: And then we ll want something a bit more permanent. Cian: Something a bit more permanent. Alison: Hopefully Certitude can help us with that. Cian: Yeah, we do hope so. And we re championing them. Alison: We are, yeah. Cian: I don t know if I should have said that, but oh well, what the hell. I m sure they can, I have faith in them.

6 Alison: If I can just draw your attention to the picture, because Connor is eighteen years old, nearly nineteen, he s six foot tall, but he is my baby, as are all these young people, or older people, that we re talking about. They re all someone s baby. And he was so cute. I think we re done. Cian: Yeah, we are. Thank you very much for listening. Alison: Thank you.

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