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Robert
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How would you describe him because I haven’t met him?
Right. Robert is a lovely boy. He is generally speaking he is fairly quiet keeps pretty much himself to himself really he has got a lovely smile. He has got a great giggle when he starts laughing and he can be quite enthusiastic about things. And he is pretty good, because he will more or less give lots of different things a try. The educational psychologist suggested that he tried horse riding to improve his coordination and his balance and he has been doing that since January with his sister and he never looks totally comfortable on the horse he never looks totally sure, but he has never said that he doesn’t want to go. He has continued on with it. He says very little after the lessons, but then later on in the day he will say things like, whichever different horse he has been on, so he will talk a bit about them and things like that.
He goes to cubs. He never says he doesn’t want to go. He goes, what he can’t handle is when it is in a different venue. That freaks him out completely. If he has got to go to a different place he will just refuse then. Like if he is going to a church for a church service for cubs, he won’t handle that necessarily, but within his routines and within…yes, he is a great lad, he is lovely, and he is very, very special to me and I just think the world of him, I just adore, him he is lovely. He is quite loving he will come up he wants cuddles a lot of the time he is very. He is very loyal to his sister and loves his sister even though he belts her sometimes.
But when you see the size of him and the size of her you would find quite surprising, but he is just a lovely, lovely boy and he has got so much potential and he is just really, really canny and really cute and he loves tigers as well. He is just great and he certainly brings a different dimension to the family and he brings he brings sometimes a lot of frustration and he is difficult to keep to a schedule because he has no concept of time, but I have learnt so much more about the natural world through him than I ever would have done otherwise and he is just great and I wouldn’t be without him. |
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Interview 46: Jeanine describes how the diagnosis was given with her son present and she doesn’t know how she managed to drive home afterwards.
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This all started in the September and it got to the April time and got the diagnosis from the hospital. I was on my own with Robert when I got the diagnosis. As I say I kind of thought these were behavioural issues, and although I did have a suspicion there some something else there but I really didn’t know what it was. And the consultant told me in front of Robert which I didn’t think was very good, with the educational psychologist and somebody else. I can’t remember their names … and they told me Robert had autism spectrum disorder. They went through the tick box thing where they tick the criteria and I was just absolutely devastated.
I found the whole thing really hard to deal with. I was really upset. I didn’t think it was right I was told when I was on my own. They knew what diagnosis they were going to give, they may be should have rang me up beforehand and said something to me, ask me if I was bringing somebody with me. I was quite shaken up and how I managed to drive home, I just don’t know. |
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Jeanine describes how Robert can recite the name of every dinosaur off the top of his head.
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He can recite every name of every dinosaur off the top of his head. Anything to do with dinosaurs, Dr Who or his other things that he is interested in, animals mainly, he is very, very knowledgeable about and he can concentrate quite well on those subjects. But generally speaking if you ask him what he has done, you know, at school or ask him what he has had for his lunch, he can’t tell you. I know a lot of children are like that. He finds it really, really difficult to concentrate and to hold his attention on anything really.
But dinosaurs etc…, well David Attenborough programmes, well he is there and he just loves them. And if he could have a curriculum based entirely around that I am sure he would be much more engaged and concentrate much better not that I am advocating an entirely segregated education but it would really help him. His year one teacher said she had never spent so much in a lesson time dealing with animals before, because she really tried to do that to help Robert through the year one and we were always quite pleased about that. |
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Jeanine's son became uncontrollably angry when he missed Dr Who because they were on holiday.
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It is just the anger outbursts that are a problem. If I could find a way of controlling the anger outbursts my life would be so much easier. If I could find a way of getting the focus and the concentration my life would be so much easier. If anybody has got any clues on that, that would be great. And it is the unexpected that is the hardest. For example, when we were on holiday in Spain, he woke up in the middle of the night quite traumatised, very, very, very distressed. It was like the end of his world had happened. Why? Because he had missed Dr Who the previous night. He was crying his heart out, he was inconsolable for virtually an entire day, because he had never missed Dr Who ever. He had missed Dr Who and of course it was all my fault and I should never have allowed it to happen. And I was terrible. I was a terrible mum. I was everything under the sun, because I had caused him to miss Dr Who.
He had had a great time on holiday going to all the theme parks and doing different things and going on the beach in Benidorm and he loved that but it was a terrible, terrible day with him being utterly distressed all day. There was nothing I could say or do that would cheer up. It was the very end of his world. He was hitting his sister. He was aggressive. He was aggressive with me, he was shouting, he was in one heck of a state. I couldn’t predict that. Maybe I should have been able to predict it. It was such an extreme reaction. It was totally distressing for his sister. She was in tears because she couldn’t handle it any more. I was distressed and upset about it. I didn’t know how to handle it. It was such an extreme reaction from him and may be I should have thought that that would happen, but I really didn’t know his devotion to Dr Who was so, so deep.
I know he always likes to watch it but I didn’t know not having that routine, that would throw him so completely and I came back from the holiday absolutely exhausted after that day and I don’t think we will ever, well I will check the Radio Times very diligently if ever I book another holiday [laughs] just to make sure we do not miss Dr Who because it really wasn’t worth the hassle So for every body who has got children who are obsessed with Dr Who just remember that bit, because it really isn’t worth it [laughs]. Just make sure you book it mid week and not on a Saturday night. Okay. |
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Jeanine has to take her flexi-time or annual leave to attend appointments and assessments and describes how difficult it is to juggle work and childcare.
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And you know, employers may be reasonable about certain things but you have to keep taking annual leave to go to hospital visits or go to, you know, assessments or for meetings at school and stuff like that, you know, that is how it is, you know, and you take your flexi time or you take your annual leave and that reduces the time you have in the school holidays with your children. But you know… maybe that is why a lot of people who have got children with autism don’t work because it is difficult to juggle.
And you know, if you want for example, they have suggested, they haven’t sent me the letter yet, but they have suggested he goes to a class on a Tuesday night at 4 o’clock or quarter past four at a school, so that he can do some more occupational therapy as part of the group, because obviously that is more economic for the health service to do it in that way but I work full time, my mum who is 74, takes my daughter to orchestra on a Tuesday night. My Mum and Dad don’t have another car, so my Dad who is 78 can’t take my son to the class. So even if I do get the letter I have no idea how I am going to get him there anyway because I am at work. And I have still got to do my 37 hours a week and if I leave early one night I have got to make the hours up on the other nights, but that means that his sister can’t go to some of the other things that she goes to because I can’t get back in time to take her to them. Well it is a juggling thing and it is how to do it and there is just me and my Mum and Dad to do it, and it is just not practical. |
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Jeanine's daughter has benefited from having a brother like Robert but has found it difficult to understand his diagnosis.
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She probably has benefited in some ways because he kind of keeps himself to himself most of the time or he kind of likes quite a bit of time on his own and that, she kind of, most probably over her life has got more attention in some respects, but in other ways has got less because probably the more emotional attention goes to her brother.
She is incredibly protective of him at school. She looks after him, she is like another mother to him in a lot of ways and I am not sure if that is a good or a bad thing. If things are not going well particularly on a morning when I am struggling to get him focused to get him to school she will quite often intervene which quite often makes things worse and then she gets into bother for making things worse. But she is just trying to be helpful and she is just trying to find strategies for dealing with things. She is, she is very she is incredibly protective of him, and she just really wants to help him.
She has only found out fairly recently about his diagnosis which was, it took me a long time to work myself to a position where I thought I could tell her. She took it all very, very well. She was very mature about it in lots of ways. She found it hard to understand the concept of autism. She found it very hard to understand what it meant for her and she had like, the first couple of days, she kept saying, “I don’t think he has got it.” And then she had a tearful… she had been away at her dad’s for a few days and on the Friday night when she came back she had quite a tearful time on the Friday night. She was crying. And I kept saying what you know, why and all this and partly I think it was while she had been away she had been kind of frightened that she was going to get it somehow or it was going to somehow, it was going to affect her, she was going to somehow get it and I said, “No, it is not like that,” and explained it.
And, but what she found really hard was she couldn’t understand why a doctor couldn’t do something or give him tablets or something couldn’t be done to make him better. She couldn’t quite twig to that at first. Then she came to a family day for Northern Partners in Policy Making course that I have been on and she met some of the other mothers who have got children with autism and she found that really helpful to talk to them and that I think really helped her to come to terms with it more.
But generally speaking I think she just thinks he is an irritating little brother and although she loves him to bits and is really proud of the different things that he has done, she just gets annoyed sometimes with him. And – but she also would help him as well and she does help him. And yes, she is very, very good with him generally speaking and yes, she has been very supportive towards me as well. Yes. |
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Jeanine wants her son to stay in mainstream school; "he has to learn to cope with the world and the world needs to learn to cope with him".
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I want him to go to a mainstream secondary school. He has got to learn how to cope with wider world, the wider world has got to learn how to deal with him and basically I don’t want him to go to special school.
I know special schools do some marvellous work and but I think really given that he is quite capable, he should try and stay in mainstream. Whether that is possible or not at this stage I just do not know. It is the level of concentration, it is the level of focus and his ability to generalise knowledge from one thing to another and he really, really struggles with that and I just don’t know as the work gets harder at school in primary whether he will actually be able to make that transition, particularly when he is so slow at writing and his written is still very unformed. I really, really hope that he does, because I just want him to have an ordinary life and I don’t know whether he will be able to do that or whether the educational system will be able to support him enough to allow him to do it, but I really hope it is possible. |
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Jeanine describes how support should be provided to enable her son to be able to contribute to society later.
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Well I have got a statement review next week and obviously I am not looking forward to that. There is, you constantly fear, that hours are going to be taken away or services are going to be taken away, or there will be some budget cuts that will come in and affect you. It shouldn’t be like that. It should be about helping Robert now in order that he can contribute to society later, so that he can get a job, he can work, he can live an independent life which is what I want for him. All I want for him is what any other child can have and what his sister can have. I just want him to have the same normal ordinary things, an ordinary life, that other children can have.
He just needs a bit of extra help, particularly now in order that he can access that. That is all I want for him. I don’t think I am asking for too much and I just want the services and bureaucracy to help me to get that for him. And it is not easy. It is a struggle, it is a fight. But there needs to be more awareness of the issues, there needs to be more understanding and a greater commitment to person centred planning.
And using that, not just in terms of the sort of older children, but use that with younger children and try and get the different authorities. We have local strategic partnerships we have all the mechanisms in place pool budgets, commissioning, we should be able to do it but it just isn’t happening on the ground. And it should be happening and it isn’t. I find it, really, really difficult that policy decisions are being taken nationally and locally which are not moving on inclusive education, they are not moving on pool budgets and they are not moving on what is best for children and it is going to take a long, long time. Maybe it’s a generation but I don’t want this generation of children to miss out. |
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Jeanine describes how support groups are not helpful to lone parents who work full time.
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And then you are told to go to parent support groups. Well the parent support groups meeting during the day and I work full time and they don’t meet in the school holidays. Well usually I work in the school holidays as well or I have got the children, they don’t meet in the school holidays. So parent support groups whilst they are valuable and I have certainly borrowed books from different organisations, its not helpful to people who work and I know a lot of people whose children have autism, you know, don’t work, but when you are a lone parent you have to work, even, if you know I don’t have a choice, I have to work. But there isn’t other than ringing up helplines I suppose which I haven’t tried yet, but there isn’t anywhere where I can get that support, so you just have to struggle on. |
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Jeanine feels that there should be more investment in her son to help him to access the curriculum.
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After a two year wait from the Health Authority he finally got to see an Occupational Therapist and had about six to eight sessions which were really useful and which he quite enjoyed but then they stopped because that was the end of the resource allocation.
Now I don’t understand this but you hear a lot about integrated children’s services. We hear a lot about the ways in which health and education should be working together but it just really isn’t happening and I can’t understand why the investment isn’t put into my child at this early stage to help him to write, which will him help him access more of the curriculum and help him to be more independent at school. And really help him with his ability to move on with his education. |
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The information often doesn’t deal with the things Jeanine really wants to know, like how to deal with anger outbursts.
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I have had phases of reading very intensely about autism. Reading quite a lot of books and things like that, but usually quite late at night when I am probably far too tired to take it in properly and the problem with reading, the books are good, but the problem with reading the books is that often they are talking about people, children or adults who don’t bear any relationship to the issues that your child has got, so you are kind of like reading this book and it is very, very interesting you know and you can get quite knowledgeable, but often it doesn’t deal with the things that you really want to know, which are how to deal with angry outbursts, which I only wish I had got that one sussed. How to predict the unpredictable because I am neurotypical and I do not think in the way that my son thinks and I can’t predict often how he is going to react to things.
And I would say probably the best things are finding your way round the system and anything you can do to find your way round the system is a good thing. I certainly would promote Northern Partners in Policy Making which is the most wonderful course for the support that you get from the coordinators, the support from the other parents that are on the course and the massive amount of information that you get from the course around all aspects of disability, inclusion, it is just the most wonderful opportunity if any one does get to go on that, please make sure you go on it if you hear of it and you can manage to get the time to go on it, because it really is absolutely first class and I cannot praise the organisers of that enough. |
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Jeanine would like to know what causes autism.
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I have thought long and hard about the causes of autism and I have read a lot about it. I think the causes are maybe quite complex. I think, I mean I did everything I could possibly have done right in my pregnancy. I don’t drink. I have never smoked. I have never drank since I was 18. I ate very healthily when I was pregnant, if a bit too much. And I can’t say that I didn’t do anything different in my pregnancy with him then I did with my daughter. They were both 7lb 10 ozs [laughs] though my son was born a little bit early, only about eleven days I didn’t do anything different I didn’t feel him move around as much as my daughter but that might have been to do with the position of the placenta because it was at the front rather than at the back.
It is not surprising she turned into a very good swimmer because she had plenty of practice before she was born, she was very, very active. Robert was not very active and that did worry me a bit when I was pregnant because I couldn’t understand why I wasn’t feeling this baby as much as the previous one, but then he stays pretty much, stays pretty still in bed whereas she is all over the place, so may be it is just different children. The birth was easier, my daughter put me through days upon days of torture with the birth and I had a much more straight forward birth with him. I think there is a genetic link, there may be some sort of environment link. They were both born in Yorkshire there was no difference around that. I was taking antibiotics just before I was pregnant with him. I don’t know whether that was a factor, I had had a chest infection and I was struggling to get over it, whether that played a part, I don’t know whether that was a factor in it but I think there is probably some sort of genetic link there. I can’t say for definite but I think there is some type of genetic link.
They were both, my children were breast fed, my daughter till she was nearly two, Robert until he was two and a quarter because he had eczema as a baby he had hardly any cow’s milk at all. He had soya milk and soya yoghurts and things like that when he was a baby and it was only when he was getting towards three that I started letting him have a bit of ice cream with his sister and a bit of like, he used to like Babybels because he liked to unwrap them, so when he was sort of two and half, three, I started letting him have a bit of stuff like that. Not very much because I didn’t want the eczema to come back, but because I had it more or less under control with the allergenics cream I just sort of thought oh well I will just let him have a little bit and see what happens, but the autism aggression started kicking in when he was about three.
Whether that has got any links to dairy products, I just really don’t know but he has been brought up vegetarian, although he does eat fish. He is picky and fussy now in some respects with his food. But when he was a baby he wasn’t and really he has always been quite a healthy boy. He has obviously had colds and he has had, you know, chicken pox and things like that. I wouldn’t let him have the MMR. I was ironically, I was determined he wouldn’t have the MMR because I was worried about autism and then low and behold he has autism so I don’t understand that one [laughs]. And I read all the information from Jabs and all the vaccination campaign groups, I read all of that, I wouldn’t let him have the MMR, his sister didn’t have the booster but he did have the baby vaccines when he was like six eight weeks old. I don’t know whether that played a factor. But I just don’t know. His sister had the MMR and she is neurotypical. I don’t understand it. I wish I did understand it. |
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Jeanine “intuitively I felt there was something that wasn’t quite as it should be but I really couldn’t put my finger on it”.
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So yes, sometimes there are little signs there. Sometimes when you have got a busy life and, you know, you work full time and you know you don’t have as much time with the children as you would like, you don’t always pick up on the signals early enough but intuitively I felt there was something that wasn’t quite as it should be but I really couldn’t put my finger on it. And that is partly because his speech is so good. Whether that is because when he was younger I spent so much time reading to him, I just don’t know. I just don’t know why. |
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Jeanine describes how her parents have been “absolutely fantastic”.
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It has not been an easy experience someone said it was meant to be trying to teaching me patience. I am not a very patient person at times. I suppose my love for Robert, I suppose that is the main thing that keeps me going through because I just love him and he is a lovely boy and I love his sister and I love, you know I just want them to be both happy and just have the opportunities and chances that I have had in life. My Mum and Dad have been really very supportive towards me. I couldn’t do what I am doing now, I couldn’t do any of it without them. I mean they have just been absolutely fantastic, they have been so supportive and so brilliant. |
