What do you think has helped you to deal with the whole situation? Is there anything in particular that you have sort of drawn upon?

Lynne Well you have been wonderful [laughs]. So many marriages break up over this sort of thing.
John’ They do, do they.
Lynne Yes. And it is usually the bloke that goes.
John’ Right, oh.
Lynne Yes.
John’ Well I suppose, I mean, okay, put it another way, there are times when we are both together involved with Gavin, but when he is home, yes, I can consciously take Gavin off Lynnes hands but I know there are other times when she is looking after him when he is home for half terms periods, and Lynne is teacher and so it is her half term period and I am still at work and I recognize that she is bearing the brunt of the load. But, you know, yet there will be times when I can… okay we just share the load basically, although we simply don’t have an even share, but … Sorry what was the question? [laughs].

Lynne I think it is team work really. Weve approached it… weve always done things together with him haven’t we at weekend and kind of….

John’ Okay. I suppose the knowledge that he is in the safe hands, particularly since he has been from age 16. For the last eleven years, we have had complete confidence in the people first at school, and now at the care home, but essentially the same bunch of people, you know. And, and there is never any sense that I am worried about what might be happening up there. Does it ever occur to you?
Lynne No, never.
John’ It is a complete and utter, you know, trust in what they are doing.

John’ But there has also been, problems we haven’t really mentioned with Gavin, which started really about the age of 15,16, adolescence I guess.
Lynne Sooner than that, it was much sooner than that.
John’ Was it, well okay, but it was a tendency, and I was much more conscious at that sort of time, a kind of self, self harming tendency. And he … I suppose the worst and probably the most obvious model was smashing his head against the wall in sort of his room that he, his bedroom, there were dents all over the wall in the plaster work where he had hit it so hard.
Lynne And the glass as well. He smashed the glass.
John’ Yes. And it seemed, I don’t know, it seemed to be associated with some kind of frustration.
Lynne Or anxiety.
John’ Anxiety, frustration.
Lynne I don’t know.
John’ It was brought under control by medication. He is still on medication on what we are told is a very low dose and just enough to enough to put him on the borderline, more would make him more zombyish, less and then he would be more likely to explode. He still occasionally, can, very occasionally, can move towards sort of banging his head. Very, very occasionally, but you know, more, more frequently, you know, he will get agitated [makes rapping noise]. Rapping on something, you know, banging, banging, on any kind of surface, banging on any kind of surface and so it’s a sort of minor form. Okay so he has balanced on this kind of knife edge, you know, by the low, the exact low dose, carefully controlled low dose of medication that he is on. The… but there was, especially kind of the adolescence time, there was a time when he had some of his aggression was directed towards others, and I experienced some of it at that kind of stage.
John’ It wasn’t a period that seemed to last that long but, you know, it was particularly worrying why it happened and, and he would, you know, he would sort of hammer his fists on my chest. I mean he had no skill about the way he was hitting me and so it was, in those days I was, you know, a fair bit heavier then him, so it was no physical problem, but you recognize the potential that, you know, if this sort of thing was going to continue in the future as he grew bigger and older, this could be a real danger problem. Fortunately it seemed to subside, you know, after adolescence.
Lynne I still feel, you know, he is pretty unpredictable and he has had such a good day today it is very easy to sort of lull yourself into a false sense of, you know, security because tomorrow morning he could get up and be banging and, you know, could be very, very anxious and I might have a totally, totally different day tomorrow.

Lynne Because when … I mean one of the things if I really think about it, and I mean it is a really scary thought, but if the funding was removed and he was say, left to us, to look after. I don’t think I could cope with it.
John’ No. There is no way.
Lynne You know to be quite honest and truthful, there is no way I could cope with it.
John’ And wed have different issues about this, I think. I mean for you, you know, you would be fearful of outbursts and your ability to control them.
Lynne Yes that is right. I would be terrified.
John’ I wouldn’t be so worried about that but I can’t help feeling guilty about the need to keep Gavin occupied and if I am not doing all the button pressing upon on.
Lynne That is right.
John’ Constantly attending to urge him to do something constructive,
you know, that I feel …
Lynne We are both like this aren’t we…?
John’ I feel guilty that I am not keeping him….
Lynne But it is great to do it when he is away and comes home like he is at the moment and we can give him all this attention, and we really enjoy doing it. But then…
John’ But you can’t keep it up.
Lynne But you can’t keep it up. You know, at the end of … Sunday we will take him back and there will be, you know, we will have time to ourselves again. But when he is home we just give him loads of attention and it is good. So yes, it is easy at the moment, because its enjoyable. We enjoy having him around. We enjoy looking after him. We enjoy his good moments and he gives us great pleasure, but the thought of, you know, us being here 24 hours and someone… and the other thing of course, is that we have no, nobody who had baby sit. It is like having a 28 year old toddler. We could never go out, we could never, you know, do anything, other than have, have him which is a very scary thought.

Is there anything that you would recommend to people that you have found really useful?

Lynne …oh the most useful thing I found was the internet support group to be honest. That was the most valuable thing I found. When I first discovered the computer, there was a British autism group, I haven’t joined for a while, I have lapsed. I have had my head in the sand for a little bit [laughs] but I thought that was wonder.

John’ Do you mean NAS?

Lynne No I don’t NAS. No. It was it was autism support group on the internet.

John’ Oh right. Yes. Hm. Hm.

Lynne And you could be in daily conversation with people, other parents – professionals are on it as well – and there was always this chat came backwards and forward and that was the biggest, I would say, the biggest help to me ever was finding that. Better than any book or anything I have ever read. Much more so because all these kids are individuals and you can’t… it is like a blind person, you can’t say that all blind people alike, and that is an obvious one, well autism is the same. They are not all the same, so what you read about one person isn’t particularly helpful to you. So…

John’ Yes, and, and, no.

Lynne So that is what I found the most helpful was the internet support group, you know, where I could, you know, you chat to somebody every day or three times a day or, you know, whenever, You would always email back or, there was always something going on. Much better than anything.

Now, it seems strange to sort of talk also about literacy with Gavin. Gavin can read. He can read a page of a book. In fact I took a lot of time, took a lot of pride in doing a lot of teaching Gavin to read when he was younger, until I suddenly realised that all he was doing was reading out the stuff in front of him and hadn’t a clue what he was reading about. And if you asked him any question about what he had just read, he couldn’t tell you. Nothing had meant anything to him even though he had read with pretty perfect kind of intonation and syntax. Yes it all came together in a grammatical sense, but in terms of semantic, what it really meant, he really had no idea at all. Okay so he can read. He can also write. And he will write. Gavin will write when he is back home and it is one way, it is an easy way of keeping him occupied actually.

And, it is too much of a temptation to say “Do you want to write Gavin?” Something to do, having a pad and a pencil. But sometimes in that writing, quite often those writings is outpourings of his frustrations. The same kind of things that he might tell you and sometimes I’ve, very occasionally, I have just sort of got a bit alarmed and really wanted to stop the writing, because I have a feeling, well I really don’t know. Is it therapeutic for him to put it down on paper or is he just working himself up? And I don’t know, but he has outpourings and you will glimpse sort of inner great disturbances going on in him and you don’t know what they are.

John’ Well you do get quite a lot of funny moments.
Lynne Oh yes. Hysterical.
John’ And some of the bizarre things you find hysterical. Like in the tranquil island of Iona which is just off Mull. Yes in the abbey grounds there in sort of garden of peace…
Lynne The garden of peace.
John’ Gavin had a tantrum….
Lynne Oh yes!
John’ You know, you just went into fits of laughter with the incongruity of it, you know.
John’ Yes, you can have a good laugh about it.
Lynne Yes you can.
John’ It is quite innocent.
Lynne He hasn’t had a tantrum for a while has he?
John’ No those were the days of the tantrums.
Lynne Those were the days of the tantrums yes.
John’ We call them tantrums.

What is he like in terms of self help and road safety and looking after himself?

Lynne He can do most things but never alone. He always has to have somebody there, as I describe it, pressing the button. If you don’t press the button it doesn’t happen. So he can do most things, he can shave, he can wash, he can dress, bath himself, he can make sandwiches, he makes cups of tea. As long as you are there, you know, just reminding him, he can do it but the minute you step back out of step, he just stops. So this is the, this has been the main thing throughout his education, it always seems to be the aim to support a child and then gradually withdraw the support so that in the end the child can function or do things on his own. With Gavin’s particular disability, no way. It can never withdraw. The particular support he needs he will never be able to function unless he has got somebody there just pressing that button. You don’t have to do things for him, you just have to be there to …
John’ If you keep reminding him he will carry on doing it.
Lynne Have to keep reminding to carry on doing it.

And what about when he is out, can he sort of cross the roads, or…?

Lynne No, not without somebody being there.
John’ Yes, I mean we have slightly differently attitudes between us. I am more willing to take a risk with a Gavin than Lynne is basically. I still have to admit that crossing roads is a very dicey business as far as Gavin is concerned.
Lynne Hm.
John’ On what would be an easy road to cross, yes, I would trust him to do it. He will stop, and you know, look in both directions.
Lynne Yes, because I send him out to the post box up here, don’t I?
John’ Yes crossing one road.
Lynne …which involves crossing a road.
John’ Yes. But you if he sees any moving car from a distance he will not cross the road. He cannot predict from how far away a car is and how fast it is travelling. He has no sense of how long it will take to get to him relative to the time it will take him to cross the road. So you know he will play ultrasafe but there is always the danger that he might completely forget to do anything, you know, to look right or left and recognize that there is that possibility of danger with Gavin. …So no, we wouldn’t really trust him to cross roads.

What sort of things was it about his behaviour that …

Well when he was very small there were lots of things that made us very anxious. He was slow in developing speech. He had very, very odd behaviours, such as doing the opposite to what you would expect. So when it was cold he would take off rather than put on clothes. One particular instance I remember was when it was snowing, he actually took all his clothes and ran out into the snow which was quite upsetting for me. Another thing he would do when he was quite young, was he would get the wrong emotion, so that if he fell he would laugh or if somebody hurt themselves he would laugh and he seemed to do the opposite one, he didn’t seem to know which emotion to use. I remember one time he fell and right flat on his face and he had an awful state, you know, nose bleed, terrible, and he just kind of got up as though nothing had happened and that was very, very scary. He would also do things like have screaming fits for a long, long time, you know, may be a couple of hours, something like that and those were really nasty times I remember.