Nick’ Don’t at any point under estimate what – what is the best way of saying this?
Vikki’ Well don’t under estimate the power of parents voice…
Nick’ Yes.
Vikki’ As I said, I think we as parents put in the initial referral to speech and language. We as parents put in the request for the statement, and whether we were lucky we don’t know, but everything that we have done has happened each time in under six months and that is without using any favouritism, any professionals that we knew. It just happened. And it is a case of if that is what you believe in to keep on going.
Nick’ Yes. And don’t ever think that you are not deserving of help or assistance. And if you apply for something or try to get help for something, they can only say, but what they can do is they can say yes, and provide you with help. So don’t you know, always try, always ask the questions. Or else you won’t get the answers.
Vikki’ I think it is never, never be prepared not to ask silly questions. For example we didn’t know that we could get a free concession card for the cinema and it was only because somebody said to me, “Oh did you not know you could get one? I thought you knew because that is your job.” And I said, “Well I didn’t know.” Or, “Did you not know that you could get a concession ticket to go to the local sports club?” And again we didn’t know. But it is not being embarrassed to ask these silly questions. Going into tourist attractions now, they have these signs up saying, disabled concessionary rates, it’s having the front to say, “Well my son is.” “Oh yes, well you can go to the front of the queue and have a concessionary rate.” It is not being taken advantage of but it is realising that if you only spend half an hour in a museum because the child has to leave then ultimately you want to spend £30 going into the museum.

I think also it is very difficult for me, taking the boys anywhere where there is cousins because you have got the comparison, say for example they have got cousins in Devon who are older than them and to be honest with you as far as I am concerned that is okay because Peter being the youngest is the youngest but when we go up to visit Nick’s brother and his children, Peter is one of the older ones, but in fact he manifests as the younger one and it breaks my heart at times to see him playing with a child five years younger than him, who in fact shows more maturity then he does and in fact the, [cousin] his cousin, who he is one year older then… gravitates towards Tom because he is bored, can’t see Peter’s logic, can’t see why he is doing these things, and you are thinking well if only. You know he shouldn’t be doing that. And yet, I think it makes me more apprehensive visiting them just because of that comparison.

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.

Are you thinking about the future?

Nick’ Quite a lot actually.
Vikki’ I think because he is growing up and you know he has been nine this year and if the next nine years passes as quickly as the previous nine years, he is going to be school leaving age and it is thinking well what is there in place for sixteen, seventeen year old ASD children who perhaps are not going to be the stereotypical high flyers who are going to go to college or are going to go to university? So we just don’t know what the future holds for him at the moment. You now whether he should go to college, whether he shouldn’t.
Nick’ It is back to the aspiration thing. Obviously we have seen a lot of progress since his diagnosis over the last three years but also because Tom is growing up you suddenly realise all the progress he is not making as well. So we don’t know. We don’t know if he is going to be living with us for the rest of his life or what, you know. And your find the government, it is what resources were in the place for example like Remploy which is an organisation specifically set up to help people with disabilities work or try and have some kind of a normal life through work and that is being cut back by the government. It does worry you, so I don’t know what he is going to do if he can’t find work. Is he just going to sit around all day or at some point he is going to realise or is he going to realise that there has got to be more to life than this. So again it is an aspiration, we just don’t know what he is going to aspire to. We just have to try and help him as we go through and see what happens.

Vikki’ It is. It is more so for the females amongst us because Nick does feel a bit intimidated so he gets banished to the kitchen to make teas and coffees.
Nick’ If you can imagine a situation that you would least want to put a autistic person into where you have got a group of about fifteen people all talking across that is what it is like.
Vikki’ But it is one of those cases where you can just sit down and tell your stories to an audience who have been there, seen that, done that and can offer advice or a sympathetic ear. Because you know Peter could have done something in the morning and hurt Tom or hurt me, emotionally, physically, got on the bus, gone to school, had the meeting in the evening and then you are laughing about it, where in fact at the time you are probably crying about it. You couldn’t cry because you had to go to work and then you had to deal with other problems at work and so you still haven’t dealt with it and then coming back and having these people here to listen to what you were saying and ultimately you end up laughing about it. You say, “Hold on a minute, he kicked you, my story is …” And the stories get more and more complex and you end up laughing about all of them. And it is sort of a very comfortable way of sharing information, sharing experiences.
Nick’ I find it quite amusing because they basically go round [town] twice, you get to host two evenings. I will go and sit in the other room and you hear the same conversation over and over again, because people go round in circles. And find it quite amusing I really do. I have half tempted to come as a waiter because I have to manage all the teas, and come in just stark naked with just a apron on just to see if I can draw some attention away from all these women gossiping but I am forbidden from doing it [laughs].

What sort of thing do you do for support then?

Nick’ Well my wife. I talk to people at work about it. Not so much in my new job. I have been in the new job six months and don’t really know people that well. I have got a good mate who I go out with drinking once a week and I chat to him. But I don’t know. I am a lot easier, I don’t think it affects me quite as much as it affects Vick. It is I don’t feel I need a huge amount of support. I am a bloke. So … it just doesn’t seem to worry me or faze me quite as much I don’t think.

Nick’ Of late actually, it is almost every time we have been out, there has been some issue, either he doesn’t want to go somewhere, or wants to go somewhere or he wants to do this. But there is no real, you don’t go out and think oh here we go, he is going to go for one today, because generally when you think that he is perfectly okay. [um] But generally he seems to think that anything that happens to him, that he doesn’t want to happen, you tell him to do something he doesn’t want to do, rather than thinking here is a reason for you doing that, he thinks you are doing it to have a go at him directly, which is, you know it is quite obvious that is why he gets angry because he thinks people are picking on him all the time.

So you have to try and wait and get a calm moment and explain to him why you can’t do a particular thing or why you can’t go into a particular shop and generally if you can calm him down and explain it to him he will understand, but you have got to be continually on your guard, when you say, “No, we are not going into the shop, and no, if we go into the shop you can’t buy anything.” And you have always got to always be on your guard to tell him that beforehand. And generally if you lay the ground rules before you go into a risky situation it is okay, but it is when you are busy, there is a lot going on and you don’t explain everything to him and he will, as soon as you say no, he thinks they are having a go at me, and he gets angry about it.

Vikki’ This for example, there is a recently opened DIY shop up the road, beautifully set out, local B & Q, and we go in there and of course we didn’t actually tell him that we were just window shopping or being nosy and he takes it upon himself to kick every single display item that he can come across. So we beat a hasty retreat, but you know, we had the ceramics being kicked and we had the window display being kicked and we had the looks from other parents with their beautiful coiffured children, beating a hasty retreat and then we were dragging him through the store as he was kicking every fixture and fitting and looking back on it you can think oh you can laugh, but at the time I think I met three people I knew including two people I worked with, whilst dragging him out by the shoulders.
Nick’ That was simply because he didn’t want to go into B & Q.

Vikki’ Oh yes. I think he is quite aggressive at times isn’t he?
Nick’ Yes. He will start screaming and shouting and telling you that you will do what he wants you to do. He will start kicking you or he will kick things around. You know he can be quite threatening in his words. From a very early age the classic thing he said was good we are going to go home. He very quickly picks up on things like that to actually turn them around. So if he doesn’t want to be somewhere he says, “Right, that’s it, I want to go home now.” And he will actually realise that if he kicks off then perhaps we will have to go home so we have to try and find something else to try and motivate him, but yes, if you imagine the screaming fit, a child having a tantrum. I want to do this. I want to do this. Now that is like it is like. Now with a 4-5 year old that is okay, but with quite a large 9 year old it is not the sort of thing you can just put down to terrible twos or something like that.

Have you found any ways of sort of managing that other than avoiding the situations in advance sort of thing?

Nick’ Generally when he has got himself to the point of no return, explosion point, the best thing to do is to forcibly remove from the situation and there is very little you can do to get through once the red mist has come down. But no, if you are concentrating and you watch it very often you can pick up sort of six times out of ten you can pick up the warning signs that it is going to happen, a very often a hug and a sit down can calm the situation down, but it is not always practical. If you are trying to get somewhere because you need to be somewhere before something closes or perhaps Tom is upset because he wanted to do something and he can’t and you know sometimes you just can’t get in there and try and stop the situation and as soon as it actually starts you just have to physically remove him from the situation.

Vikki’ Yes, re-living films so he will create this beautiful scenario. He has got about four kingdoms in his mind so he has got these, I am not quite sure what they are called and he knows exactly where they are on the map. He can point to them. They are all completely imaginary. He has got his own military force that patrols each country. Colonel Benson regularly comes to stay with his wife and family and we have to lay extra places at the table.

Nick’ [laughs].

Vikki’ And again he is all very eloquent. And it is all very deliberate and you can specify the aircraft that he uses and the military weapons but they don’t really exist, so the weaponry is incorrectly specified or the infantry. It is all wrong but it said with such conviction that it is right. So to the untrained ear he sounds a very knowledgeable, intelligent child but when you scrape beneath the surface and you can actually say that he is a combination of films that he has watched with books that have been read to him with his own imagination twisted together to make his own little world. And it is so much so that he can recite Horrid Henry down to distortion on the soundtrack.

Nick’ On the tape yes.

How would he spend a typical day like Saturday?

Nick’ He might get up at 6 in the morning and come in and jump on the bed and expect us to get up or alternatively we might have to go and get him up at half nine. It depends. He will come down. He will have breakfast and he will go upstairs and get himself ready and then he will either play in the bedroom or he will want to play on the computer. Occasionally he will play with Tom and sometimes sort of two times in ten they will play quite happily for two or three hours, but other times you will start hearing things being thrown around and shouting and screaming going on up there because something has not gone right. So we will separate them. I don’t know.

But you know that money is really useful. It allows us to do things that we wouldn’t be able to do. So first when we got it, we thought, we made a mistake, we actually phoned them to ask whether they made a mistake and they said, “You answered all the questions.” “Yes.” “You answered them all honestly?” “Yes.” “Well that is what you are entitled to.” So it is definitely well worth… it is quite a tortuous process. At first it was quite a painful process because were actually putting down in black and white all the problems that you have with your child and it took what nearly three weeks to fill out the form.

Well I actually did it on line so that you could write a bit and save it, go away and come back and have a got at it because if you had filled it out you could almost slit your wrists and think well there is no point in having this child because of everything and you couldn’t be positive. So I filled it out with a friend and we were both next to each other filling out these forms and she was saying well I could put hes better, but you can’t put the word better, if you put better into that form they are not going to give you anything and in the end we were just you know having a tea, writing a few sentences and putting it to bed and bringing it out again. But again the money that is in the bank is for the whole family, it is not just saved so that Peter can have this toy, Peter can have that. It so, for example, Tom can go out separately to his brother or we can go out altogether and do something as a family, which is what we are using the money for really.

Nick’ Well I think initially we thought we had a gifted child because he started pre school and I can remember, there I was. I had a son at nursery, and my youngest was starting a pre school at two and a half and they were lining up the plastic animals and they were saying moo cows, baa sheep, whatever and he looked, “That is a hippopotamus.” And I was thinking, oh yes, wonderfully gifted child and we thought nothing more of it. So he went through the pre school and then got accepted in the same nursery as my older son and for a year we thought well nothing untoward has been said. He is obviously working hard and he wasn’t forthcoming what he had done, but the nursery staff didn’t tell us what he hadn’t done. And we had a parents’ evening.
Nick’ This was right at the end of term.
Vikki’ So a whole year had gone of nursery education and they sat us down, and they went, “Well actually Peter has made no progress since he has joined the nursery class. We think something is wrong with him. Oh and by the way your minutes is up next please.” So we thought ‘that is oh that’s food for thought and in my professional capacity I actually teach in a mainstream secondary school and have a speech and language therapist in. And I sat her down, because the girl that she was meant to be talking to, obviously didn’t fail to communicate she was on holiday this time so I took advantage of this free block of time that she had and sat her down and said, “Well this is what he is like. This is what…you know, how he behaves.” And she said, “Well what I will do is I will write a referral for you,” there and then. And I think within how long, a course of six months, he had been put through the system in [town]. He had been seen by the community psychologists and was given a diagnosis.
Nick’ It was very, very quick.