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Jane and Dan - Interview 57

Age at interview: 26
Brief Outline: Jane and Dan's son was diagnosed with autism six months ago. He has a sleep disorder and has some difficulties eating food.
Background: Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.

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Jane and Dan, both students, have two children; E aged 4 and M aged 3. Jane describes how they both thought that there was something different about M from the age of about 9 months because he had some unusual behaviours.  M did not sleep properly at night until he was two and a half years old and now has medication for a sleep disorder. He has some difficulties eating food and for a long time would only eat weetabix and milk.  He had lots of different tests and Jane eventually begged her doctor to refer him to a paediatrician because his behaviour was getting worse. After a gap of several months, M was diagnosed with classic autism seven months ago. 

Jane and Dan describe feeling relieved and comforted to get the diagnosis because it helped them to understand M better and they felt better able to help him. They want M to lead as normal life as possible and to give him the same opportunities that other children have. 
 
Jane, who has been a full time carer for the past ten months, describes feeling frustrated by the number of appointments M has and the way in which she has to repeatedly tell the same details over and over again.  Dan has also found it difficult to take time off work for appointments despite working in the education system. Those professionals who have got to know the family and worked alongside them over time have been very helpful.  Both Jane and Dan feel that the M having autism has had a massive impact on their family life and they structure most activities around M so that he can join in.  M has tantrums which are difficult to control and has no sense of danger which can make going out difficult.

Jane is less optimistic than Dan about M’s future and she gets frustrated and upset when she goes out with M and other people stop and stare.  She is particularly concerned because she feels that M is doubly disadvantaged because he is mixed race and has autism. Jane is also concerned about what will happen to M when they both die whereas Dan feels confident that M will be able to lead some sort of independent life and have the support of his sister who has a very close, loving relationship with him.

Jane has become involved in campaigning for services locally through support groups and describes this as a positive and empowering experience. M loves being outside, running around and getting muddy. The family has a pet dog which he enjoys taking to the park and he has just got his five metre swimming badge.

 

Jane and Dan talk about feeling upset and frustrated about their son’s diagnosis.

Jane and Dan talk about feeling upset and frustrated about their son’s diagnosis.

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Jane' Well it is really sort of frustrating because when we got the diagnosis and you start to read everything. When you start to read on the internet and you start to read all the books, it is really upsetting, because you think I don’t want my child to be like this. I don’t want my child to have this stigma attached and you feel very frustrated. And there are times now when I feel very frustrated and very upset because even though we want him to live a regular life, we know that he can’t. When people stop and stare in the street or he is having a tantrum and everybody is looking at you thinking, “Can’t you control that child?” and you just, you get really upset because it is not his fault that he is being like that.
 
And not a lot of people understand what autism is. If you explain to them, they do understand but it takes a lot of explanation and when you are very tired and you are coping with a child like he is, you do get very fraught and your emotions… and so sometimes you just can’t be bothered to [laughter in voice] tell everybody and you just think let them think it is a naughty child or….
 

Jane feels close to tears sometimes when her son has a tantrum in public.

Jane feels close to tears sometimes when her son has a tantrum in public.

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So what would you do if you are out with him and he has a tantrum. Do you explain to people?
 
Jane' It very much depends on the situation where he is, but in the doctor's surgery that seems to be the best place he likes to have a tantrum because he doesn’t like to sit and wait. He doesn’t do waiting very well, because he doesn’t understand the concept of waiting and what he is waiting for because he is three and a half now, but he has a development language age of fourteen months. So when he is having a tantrum and other people are lined up in the – I have to hold and physically pin him down, because there is no space for him to tant in a safe environment, and I just generally whisper to the person next to me that he is autistic [laughs], because there is nothing else I can do. You know people do look, and they do have a good stare, and I just think I hope this really doesn’t happen to you, because you do feel mortified.
 
I mean sometimes you are really close to tears and you just want to get up and walk out, but he is not going to learn anything by that so we just have to sort of hang on in there. And one time he was crying, I had to pick my Mum and Dad up from the airport and the flight was delayed and he cried for three hours in the airport and I didn’t have a buggy with me. I usually have, we usually have a disabled buggy for him. And he was kicking, and he was screaming and he was pulling hair, and I just had to hold onto him and just wait because that is all I could do. It is funny looking back on it, but it isn’t so funny at the time [laughs].
 

Jane and Dan describe their son’s eating habits.

Jane and Dan describe their son’s eating habits.

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Jane' Eating is a bit more technical because he takes a long time to eat anything and he is very sort of slow. And you have to pre-empt what he is going to eat so he could actually eat something because he doesn’t like certain things, and for one period of time all he would eat was Weetabix [laughs] with milk. And he had Weetabix for breakfast, dinner and lunch, but now he has a little bit more of a varied diet and he loves fruit, he loves raisins, he also loves sweeties, but we try and tell him that he can have some sweeties later, when we are out anywhere, although he will kick off won’t he if he can’t have sweeties right now and there. So he is getting better, but there is concerns about his weight and his height and not growing.
 
So … but he is very messy still. Very much like a bit of a food fight. If he has had beans for breakfast, you will know, it is all down his top and he does like you to feed him. So he is sometimes like a baby and he likes you to cut it up and feed it into him, because he gets fed up I think of trying to eat, and it is so slow and everybody else has got up and left and he gets a bit frustrated by that. So I do feed him. And he does… we started off with finger foods at first to get him to eat. And then we went on to just what we eat.
Dan' Mash and all that.
Jane' Yes.
 

Jane and Dan’s son “loves being outside, having his wellies on, running in the mud”.

Jane and Dan’s son “loves being outside, having his wellies on, running in the mud”.

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Jane' He likes going swimming. He absolutely loves going swimming. He likes taking the dog for a walk in the park. He likes holding the lead and he likes to try and command the dog [laughs]. He loves the swings. Loves the play park. So just being outside and being normal, having his wellies on, running in the mud.
Jane' He absolutely loves to be outside. He likes running up and down a big hill with his little toy truck constantly for like three or four hours at a time wearing himself out [laughs]. It is very funny to watch. …I think that is what he likes.
Dan' Yes just being outdoors and I would say going places, because even when you are driving to where ever it is and what have you, he is just enjoying and looking out the window and just seeing everything passing by and when we are getting to the zoo, because he just loves seeing the animals because when we went to the safari, we went to the safari…
Jane' Yes. He loves animals. He is like amazed by them. When we took him to Knowlsley Safari Park and we had a monkey on the car and he thought it was the most funniest thing ever [laughs]. He likes playing with his sister. He has got a very, very close and loving relationship with his sister. He really loves her and like gives her hugs. And he loves Dora the Explorer. Barney. Pepper Pig. Can’t understand why everything in Dora is pink and he can’t have anything. He loves dressing up in [name]s clothes. He has no concept of girl and boy so he loves being a pretty princess or a builder. He is just your average three year old I think.
 

Jane gave up work ten months ago because attending appointments and caring for her son was...

Jane gave up work ten months ago because attending appointments and caring for her son was...

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Jane' In January sure I had to give up work because of [name]’s appointment and to care for [name] was getting more and more difficult. So I gave up work and became [name]’s full time carer for ten months, which was really hard, because sometimes five times a week we were seeing, we were going to different hospitals and different appointments and we had to see different people, and he had to do different assessments and blood tests and it was really stressful that period, because it just felt like sort of time when you meet professional people you feel that everybody… you have to repeat yourself over and over again and everybody wants a piece of him, and they are all talking about him, but they don’t really know him, and I have found that sometimes really difficult, but the people who we work with on a long time bases, the portage work that comes to help, the speech therapist, they have got to know us as a family and it is really nice as well, that they have come on the journey with us, because they have really sort of helped us, helped me, and helped [name] in terms of our home life and getting [name], getting us ready for school and getting [name] trying to communicate and giving us advice on the best sort of possible things. 
 
Jane' But I am finding, I find that anything that [name] needs in terms of like nappies because he is still incontinent or Disability Living Allowance, everything is a weight on your shoulder because the services are so short. We don’t… we have only just started having respite care now and he is three and a half and it is a real sort of struggle. That has been a real challenge because we are with him 24 hours a day, 24/7, we care for him 24/7 and some days he will just not let up. From six o’clock he is up in the morning until seven o’clock at night, he is up and he is around the house, and he has no sense of danger, and a very, very low pain threshold. So at any minute he can do something and you have got to sort of stop him and tell him or he can have an accident and he won’t tell you. So there is always something sort of in the day that will prove challenging with him.
 

Jane's involvement in a campaigning support group has been a positive outcome of the experience.

Jane's involvement in a campaigning support group has been a positive outcome of the experience.

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Have you been involved in any support groups or anything like that ?
 
Jane' Yes. I am quite actively involved. And at first I joined our local support group and it has got over a hundred members and I met quite a few people through there, good friends through there that have really helped me and explained things. But I have taken, from that support group I have joined up with three other groups and we are campaigning for services locally to be improved. And I really like that aspect of it because … something positive has come out of it. It is something positive that I can do. I don’t, we don’t sit around moaning about our child’s condition, what they can do, we do something really positive to improve the chances they have in life through education, so we are really quite, we are funded by DFES and Treehouse, so we get together once a month and we discuss things and we have different professional people come to the meetings and we are hoping to fund our own research in [town] regarding children with autism, and it feels really empowering, because I am actually doing something good out of it. It feels really good.
 
Do you get involved in any support groups?
 
Dan'  No. I leave it to the captain here. Full speed ahead.
 

Jane worries that her son is doubly disadvantaged because he is 'mixed race' and has autism.

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Jane worries that her son is doubly disadvantaged because he is 'mixed race' and has autism.

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Jane' One of my biggest worries about [name] for the future, is he is sort of learning to adapt and learning to live in his environment, and I really worry because he is mixed race, because research has shown that black boys don’t do as well in school. So adding the autism onto it I sometimes feel like he has failed before he has even begun. And it sounds quite dramatic that, but it is other things that I worry about for the future like social situations and living in England and living, we don’t live around a black community. It is really difficult to teach him things about his heritage or where he, you know, where his Dad comes from, and where I come from, and to get him to understand that, and we just, sometimes I think about it, and I don’t know, there is nobody can tell me at this age and this many months he is going to ask that question, and with my daughter we have discussed it, and we have discussed it quite a lot and she is four, but for him, it might never come, but then it might come.
 
Jane' And I feel, I feel like it is a double disadvantage in some terms, because him being a minority in his race, and then having the autism on top of that, sometimes I feel like it is going to hinder his progress.
 
Do have thoughts like that?
 
Dan' No.
 
Can you be, is that a concern of yours, is there anything you can think of that possibly might help or any sort …?
 
Jane' Not really. It is just that research has shown, research with the National Autistic Society and other things, other researches have looked into this issue. It is not a widely researched issue but it has shown that, you know, other issues regarding black boys going to school that they are sixteen times more likely to be excluded, you know, their academic performance. I know that he probably won’t get involved in sort of like the gang culture and things like that, because he will never have that level of comprehension but it is still, I want him to be accepted. I want him to be accepted but it is really difficult. I want him to understand who he is but it is really difficult because at the moment he has no comprehension of it at all. So he doesn’t, you know, if anybody taunted him for anything he wouldn’t understand and that is a concern as well, because they are going to school now, they are going to a mixed school, but they are still minority pupils, and you know, if anybody said anything to him in the playground he just wouldn’t have a clue what they were saying and that is a good thing as well. But he can’t stick up for himself, because he doesn’t understand. He doesn’t understand what they are going to say. And you don’t want him to come home and think something that they have said and think it is true without us being able to tell him, what is the truth and what is right and what is wrong. So that is a big concern.
 

Jane and Dan discuss the different ways they approach thinking about their son’s future.

Jane and Dan discuss the different ways they approach thinking about their son’s future.

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Is there anything else that really concerns you about the future?
 
Jane' Concerns us. Concerns me especially about what will happen to [name] when we die. It’s quite morbid to think about but it does, it does really concern me. It does worry me, because even though he is little now, you still think about it, because with my other child, I know that I am teaching her now and she is going to be able to take care of herself, and she is going to be able to work and have children and get married and things like that. But he is not going to have those options open and you know, we already know that he is going to need some great deal of care throughout his life. So it does sort of worry me because I don’t want him to end up in an institution. I want him to be happy and feel like he can live independently when we do pass away. That worries me.
Dan' Hm [laughs]. I feel confident and I am convinced that he will be able to take care of himself to some extent, at least to manage, because the values and quality of life available to him now, I reckon, that will help. I mean he may not be able to help himself totally compared to our daughter, but he will be able to do it to a sufficient extent and I imagine having my daughter around, she would also help him because they are very close. They are almost like twins I would say, you know, and she always asks about him, even when he is asleep in bed, when she is up and he is in bed, she always says, ‘oh I want to go and see [name]’ and she will get up and go to his room and have a look at him and make sure he is tucked in and all that stuff. So I am confident that even if we are not around she is going to be able to help in some way or other. And like I said the, the values we are teaching him now, will help [name] with characteristic for the future. So I am a bit more optimistic [laughs] about his future.
 
Is this something you have discussed between you or not?
 
Jane' Oh we tend to argue about it when we discuss it [both laugh]. We do. And I know that I have to be more optimistic about it. It is just very hard. When you get a piece of paper and you write down all his difficulties, it is really hard to look over that and see the rainbow at the other end, and see the pot of gold at the other end, and think, yes he can get there, because you see, he has so much pulling him back. It doesn’t mean that I don’t want it to happen. It is to me, sometimes, I think more realistically [both laugh].
Dan' Not necessarily more realistically it is just that you have read into things more then I do, so I try not to get too much dive head first and put my foot in it, feel the water [both laugh]. It is like I said if you read too much about it it takes you to that stage doesn’t it?
Jane' Yes. I think that is really true.
 

Jane’s family want to think of their son as ‘normal’ while Stan’s family are beginning to...

Jane’s family want to think of their son as ‘normal’ while Stan’s family are beginning to...

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You say your family, some of your family, find it difficult. What has it been like with friends and family when you have told them?
 
Jane' In the beginning it was sort of like, “Oh there is nothing with him. You are just worrying too much. He is just a normal little boy. Don’t worry, that is normal for a child to do that. They all do that.” But... and that feels like you want to scream at them sometimes, because I have had a normal functioning child and they don’t do that, you know, they don’t pull the freezer out, and you know, want to pull it out constantly and run all over the floor with frozen food. Neurotypical children don’t always want to do that and they don’t want to open and shut the doors fifty times in one day [laughs]. And so it does feel frustrating, but as they got to know [name], and as I have been able to explain more about the condition and I have learnt more about the condition, then I can explain why he is doing certain things. Then they have sort of said okay. But some, some family members don’t like the acceptance of accepting it and you know they just want to think of him as normal. And I think you know, that is okay, because it is very hard to come to terms with the fact that he is not, and we as parents have had to do that but not everybody has to take that journey.
 
What about your family?
 
Dan' Well from my perspective, my family perspective its it is more for being educated and learning more, especially where we are from in terms of the Caribbean, because it's trying to understanding first of all what autism is, …what’s.. what is the condition and then basically how a kid with autism acts and stuff like that, because it is not so much of being in denial, but more of having a discipline perspective in terms of the way a kid is growing up. It is usually perceived as being autistic or anything is wrong with the kid, most of the time it is just seen as the kid being naughty and what have you. And it is just since myself and other relatives have moved away from the Caribbean to North America, to England, to different parts of the world, we have come to terms and learnt more and understand more and are more compassionate I would say to the term autism.
 
Dan' And maybe here having a child with autism, my cousin who lives in New York having a child with autism it is more compromising on the part of our family. One for them to know what it means to have a child with autism and actually have them trying to help or trying to sympathise to an extent and sympathise, you know, so that is a sense of relief. It is not so much of a denial it is more for an embracing and just trying to make the best of the situation.
 

Jane does not want to change her son's diet because of the cost and the lack of research...

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Jane does not want to change her son's diet because of the cost and the lack of research...

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Have you tried any other interventions like dietary interventions or anything like that …?
 
Jane' No. We are going we think Name has got Coeliac’s disease as well so we are going for some more testing on that and hopefully next year, we are going to give it a year to try the dietary interventions. But I am very sceptical about it for the pure thing of there is not research there to support it, and the cost of it because the cost is astronomical and it is like £2,000 for a whole year of the dietary intervention and it puts a lot of strain on us, because we think we should be doing it and we, you know, we should provide the best for our kid, and, but we have to take it in our stride and we don’t want to introduce too many changes to Name’s life. So, and I can’t cope with too much change with dealing with him, so we are just taking it one step at a time and possibly next year, we will possibly look down the line of doing something like that.
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