Do the boys get on well together?

Yes. I suppose they do to a certain extent. I have to spend a lot of time explaining who meant what and why they did it because the facial expression thing is very difficult in a large family. I suppose in some ways it is indicative of what happens in the outside world, but Joe will say, “What are you giving me evils for?” when Luke is just eating a sandwich and then Luke goes, “Oh I am not even looking at you.” And then Sara says, “Oh I know you were. I have just seen you. You know, you were giving him a dirty look.” And then I have to say, “No he is just eating.” And then because Luke pulls a strange face because he doesn’t understand he looks like he is glaring and then of course everyone starts and those kind of things are always quite confusing. And of course they are also clumsy. You imagine living with five dyspraxic people. Everything is knocked over and smashed up every single day. You kind of get used to it. And carpets are a disposable item in this house. But generally they do. I mean it is just Anna and Rachael that and poor Anna often says she often feels like she is living in the Truman show.

I think a lot of the time Anna and Rachael find Joe the hardest to understand because in reality Joe is a very complex little boy. Little, he is not so little now but because he speaks so fast and because he is so articulate and because he can seem to be so high functioning, there is no allowances made for anything. Whereas when he was little and he was absolutely wild and he was biting people and that kind of thing it was more obvious but now, he wants to talk about girlfriends, well not for him yet, he is not up to that stage but everyone else is and because he is doing puberty everything is of some kind of sexual references gone on.

You know it is amazing how many times he can get that into conversation and it does seem quite ironic to be saying, “Get your dummy out of your mouth because you are making your spots worse.” It just doesn’t seem to go together somehow at all [laughs]. But, you know, they see him as being rude and being naughty whereas he is just being Joe and he has not learnt the social skills and he has not learnt the communicational skills and he isn’t at the level to be able to yet to get through that kind of stuff yet. So all of his rudeness they take quite a lot of offence to. You know, “Er what are you wearing that for,” and “What a freak. Don’t you think you look weird in that.” And really those are the kind of things that when you live with people on the spectrum you just have to accept it. You can try and teach to the best of your ability politeness and tact and stuff and Luke can do it now but Joe can’t. He has not got that yet and theres other priorities.

I think a lot of the time that is what is important about parenting people on the spectrum is picking your priorities and dealing with that one and you can’t just address the whole lot all in one go because if they were doing something that is really inappropriate, like picking their bum in public or something like that then you know that is what you deal with, you don’t go dealing with tact or whatever else, you focus on that one. You know or pooing somewhere or something like that. You know things that are really aren’t done. You know those are the things you have to address before you go onto the more subtle aspects of things.

Luke often thinks he is Mr Accomplished who can run this perfect emulator but in reality he gets just as much wrong now as he did when he was two. It is just different. That is one of the things about it I suppose.

Nicki’ Yes, I mean Emma now, we explained to her that you know Tyler is not like the children she goes to school with. In a very gentle way and for a while she couldn’t get the word autistic and she used to say Tyler is fantastic and we said, “Yes, we agree entirely.” You know it was always fantastic instead of autistic, which is fine. But now she knows that Tyler is autistic and sometimes she will say, “Why does Tyler do that…” you know when he gets he beats his chest, like Tarzan. “Why does Tyler do that?” “Well that is Tyler’s autism.” And the other day we were having a discussion and she said, “She needs to live in a very big house so that she can have Tyler come and live with her or at least have dinner with her, like [uncle], like Uncle [uncle] comes to have dinner with us.” So …
Mark’ And we have never even mentioned to her that [uncle] is autistic.
Nicki’ No.

How would you say it has affected his siblings?

Very badly because his sibling is Down’s syndrome so the Down’s syndrome sibling needs a good role model really because they learn all visual and they learn by copying, so Jonas having the ADHD side of things and also the Asperger’s , he needs to be poking him, and hurting him, and feel kind of cruel to him, which in turn makes us having to tell him off more often. And that never stops. I am sure he does love his brother because when he is not around he does sort of miss him, but he is continuously tormenting him, so that makes a really difficult environment for his brother.

The other day Jonas was sitting here doing his homework and my Downs syndrome son was in the playroom which is along there playing with some toys and he kept, instead of poking him and doing that sort of thing, he sometimes when he can’t poke him he will then torment him from this distance. So he was saying to him, “Oh [friend] is dead.” And [friend] is one of my son’s favourite friends, you know, so that was making him shout and going, “Nooo, nooo.” And you know he is continuously having to torment him so it makes it hard for him. He thinks that is the sort of behaviour you have. He has got nothing better to copy from.

It is affecting him in the sense that he goes back to school and with the TA and the teachers they get him back into the behaviour pattern of being kind and nice to his peers. Then we have half term, so he has had a whole week of being poked and tormented, so then he goes back to school and they have to start again to get him back into the swing of not lashing out. It is not that he is cruel himself, but it is just that if he wants somebody’s attention or he wants, you know he will lash out like his brother does to him because that is what he thinks you do. So it affects them both and it affects us because we are doing even more shouting.

I have got my elder daughter who is eleven, and she is a lovely little girl, very well adjusted I think considering everything that has gone on but obviously she has been through a lot. She has grown up and for a good three years or so, she was physically abused by her brother and she witnessed her brother attacking me physically on a daily basis. She witnessed him harming himself. For those two years they attended the same school together she had to be very grown up. She was called in by dinner ladies to find out what was the matter with him. She was asked by teachers in the playground could she come and calm him down, because he was crying and she just often found him wandering about upset and she just dealt with it herself.

So going back a few years she was only about eight herself and I just think that is an awful lot for a child to cope with. And then there is all the playground stuff, “is that your brother?” and she has had what she calls the embarrassment to deal with. She has felt neglected and in fairness to her she has been neglected, she has been pushed to the sidelines because by the nature of his behaviour I have had to deal with him as a priority, you know because he has been a danger to himself. Just really basic examples, like screaming all the time, so she hasn’t ever been able to watch a film, we haven’t been able to go out as a family because he wouldn’t go out for all these various reasons. We have had a few attempts when Callum was younger at going on holiday and we are usually lucky if we make the destination before we turn round and come home because he was screaming. And at the time we didn’t realise that it was the change, he didn’t like change, he didn’t like the journey. There are so many things.

We have actually made it on holiday and then come home the second day into it which has been devastating for Kayleigh. We have planned days out and then cancelled them on the morning, because we couldn’t get Callum into a car. So I feel Kayleigh has suffered more than anybody. I mean me and my partner [name], we are adults and we can rationalise it a little bit, but for Kayleigh it has been a terrible time.

And she gets jealous that Callum has all these appointments and she doesn’t understand they are boring, but he does get lots of stickers and he gets rewards if he has done really well, because we have just had such a terrible time with him, that if he did something good we were so pleased with him and he used to get treats if he went to school, which of course she didn’t. Because I just expected her to go to school but if Callum actually went to school for a whole week it was such an achievement I felt I needed to buy him a present. Well I actually had to use it as an incentive to get him to do it in the first place.

Well it is like sort of trying to through your children in a sense, you just that when they were young, when he was younger, when he was born, he just did the normal things. You now you went out for the day to Blackpool and went to the pleasure beach, went down on the beach, went to the funfair, great you know. But as he got older and he started the behaviour it affected them in the sense that my eldest daughter used to go to a friends to do her homework. She wouldn’t do it at home. Now when she left, because she is 29, she is 15 years older than him. So when she had gone there were only three of us left, three children. His elder brother had been brilliant with him. Now he is 27 today. It is his birthday today. But I don’t know whether our [name], my son, has stayed with us deliberately to sort of help look after him.

Do you know, he is not really, he has never brought a girl to my house, ever. He has always had girlfriends but he has never brought one back to my house and I think it is things like that. Like my other daughter she didn’t like bringing her friends in case Andrew attacked them. So it is things like that. We had very few visitors – that is one of the major things, you know, people don’t come to your house because of him. Other kids you can go to their houses, like to Ciaran’s house. [Name] is not going to attack you. He is okay. But Andrew is different, he is just a different aspect of that autism. So that is the major thing I think. It does affect your family life that people don’t, you don’t bring them to your house you know and so, but my kids are great. Every one who knows them says they are credit to me you know. So they are fairly happy in that sense. Even though they have got… they love Andrew. I mean they go and visit him all the time you know, so it is not like, oh now we have got rid of him, we can have a …. They have not gone ballistic. They are still doing the same the same things they did, except he is not there now. There is a more relaxed atmosphere in the house. Well there is bound to be [laughs].

What sort of effect has it had on his sibling?

It is quite a big drain. It is, it is annoying for her, because shes , I know that sometimes she doesn’t get as much attention as she perhaps should. And there will be moments when, I mean she is growing into teenage, and sometimes she needs her mum. And when he was a little bit younger, not very long ago, he wouldn’t leave my side when he was at home, and that meant she could never have a private chat. We never had a conversation together where there wasn’t a small boy deciding to put his pennys worth in. We didn’t just have a comfortable chat without him. Now we can have more time alone, but he is still not going to let her have a lot of attention, without wanting to be there. I think that is still a big need for him.

He is very stressed at school and when he comes home he needs a lot more attention and relaxing time probably than most children, and that does rather push out any other siblings. There is also the annoying… if she had friends around then sometimes it will go badly wrong, because sometimes he will take against them or be a problem. She gets frustrated because sometimes we can’t go to places, because we haven’t planned the length of time that we need and we can’t just suddenly all get up and go. As she gets older, that is a bit more frustrating at the moment for her because she is still fairly dependent on us. But I am hoping as she gets older still she will see that she can go out on her own for example. She is not so dependent in the end.

I mean he is not as dependent as he was. So I think it is a little easier but it is an impact. And of course there is also a psychological impact of knowing that your brother had a label, which I think took her quite a long time to get used to it.

Vikki’ I would possibly like to see more support for siblings.
Nick’ Yes.
Vikki’ Because I know historically where we are… in our local Health Authority had a siblings group and there was funding available and then there wasn’t funding available and that would have been and is wonderful for Tom to meet up with people to talk about issues that he has. He has recently joined Young Carers because I didn’t realise that he was eligible for Young Carers but because he has a sibling with a need greater than that of an ordinary child then he can join and he goes out on trips with the Young Carers, I think once every holiday, just so that it gives him an advent, you know an option to speak to professionals about how he feels. But I think it would help him if he could meet up on a one to one with professionals to discuss how he feels because I am sure it has affected him more than he lets on.

There have been issues at school where he has lost his temper and gotten cross and has he gotten cross, because that is who he is, or has he gotten cross and lost his temper because of what is going on in the home life that isn’t the same as what is going on in his friends home life. So I would possibly advocate that siblings groups, grandparents groups, for the wider community, or the wider family.
Nick’ Yes.

And also on the course, it was strange but we found toilet training a bit issue as well and we were taught that you know if it’s like for Joseph it took ages to get him out of, well I suppose he was out of nappies by about three and a half, but we were taught you know really make a fuss of them, if they do something good, really make a fuss of them, so with Joseph, the first time he went and had a wee, we were literally “you have done it, you are brilliant. What a good boy!” And he sort of was grinning you know as if to say, “Yes” and he kept “Yeah” and making all these noises as if to say I have had a wee and that is great and we were so excited and because we had this sort of reaction to him, it would be like, hey I am going to go and do it again and it was great.

And it was just everything that he did like that, if he did something really good then we used to have to leap around the room and be really happy and really totally over the top. I mean I even did it in the supermarket once, and somebody really looked at me like God she is raving mad and I thought may be I am, but my son has just done something really good. And he used to actually beam at her, beam at us, because he used to think it was great, “Look what I have done to mummy, she has gone mad” and then we tried it with Adam and it had totally the opposite effect. Adam went and had a wee in the toilet and, “Oh Adam, you are so clever, you are such a good boy”, and he just instantly hands went over his ears and he shot off to the bedroom and was really upset.

So we learnt to sort of change it to, “Adam that is really good. What a good boy”. You are really, really clever and because we had totally different reactions to both the boys which of course we weren’t expecting, but they are very, very different in character and everything. They don’t even look like each other. And that was our way forward with Adam and we just found that just quiet encouragement and telling him he had been really good, whereas Joseph you got, “Yeah” and Adam you got, “It is really good, Adam, well done” and a it of a thumbs up and things and for him that was the way forward with Adam and we have just found that you need to adapt your style to the child.

I mean Joseph has always been very reactive to sort of big cheers and “Yeah” and things like that whereas Adam has been, “Really good boy” and then he will do a little smile and sort of look at you and he might come over and touch you on the knee or something like that, which is quite an Adam thing to do and it is like “Okay mum, calm down”, you know. They do look at me like I am mad sometimes, so yes that was another thing that we learnt on the course, was, being enthusiastic, but I think with Adam we just learnt there is different kinds enthusiasm and you need to find the one that suits your child really. It was quite strange.