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Tracy - Interview 13

Age at interview: 40
Brief Outline: Tracy's daughter, Nicola, was diagnosed with autism when she was six years old. Nicola is currently at a college for further education and will start working at the local hospital radio station when she finishes her course.
Background: Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.

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Tracy and her husband have a 19 year old daughter, Nicola.  When Nicola was a baby, Tracy noticed that she wasn’t reaching milestones like other children.  Her GP told Tracy that Nicola would catch up.  At nursery, Nicola did not mix with other children and was still in nappies at the age of five. 

On starting school, Nicola was seen by a whole range of health professionals and therapists and the school started the statementing process; autism was raised as a possible diagnosis. Tracy asked to be referred for an official diagnosis and after a number of tests at a local hospital, Nicola was diagnosed.  Tracy describes going through a range of emotions at this point which included relief, blame and anger.  It took four years to get the statement and after a period of one to one support in mainstream school, Nicola moved to a special school which she loved. 

Nicola has always slept badly and will wake her parents up at any time during the night to ask a question or tell them something. Her parents spend little time together as a couple -- this has been difficult for both. Tracy worries about her daughter because she is vulnerable and very trusting. Reaching adulthood has brought new challenges for the family and Tracy is concerned about Nicola’s future.  She feels she over-protects her daughter in some ways but this is partly because young adults with autism get very little support or advice. 

Nicola has a lot of potential and when she finishes her college course, will begin a job at the local hospital radio station.  She has passed her GCSE’s, won a national art competition and loves music and Chelsea football club. 

 

Tracy describes her experience of getting her daughter's diagnosis.

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Tracy describes her experience of getting her daughter's diagnosis.

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And you said somebody mentioned autism. Can you remember who that was?
 
I think it was my GP.
 
Your GP?
 
Hm.
 
And what did you do with that when you heard that?
 
I said to him, because we had seen like a speech therapist because she wasn’t talking and we had seen a behavioural specialist, and I said to him “Could we actually see a doctor that would be able to confirm that ?” And he done a letter and we went to [hospital], sorry you will have to edit that out. We went to a children’s hospital in London to see if they could pinpoint more about the possibility of it being this and basically they did lots of genetic tests, blood tests, and went right back through our history – because I am adopted – so it was hard. That was another barrier. It was hard for me say, well I had to keep saying, “I don’t know. I don’t know”. But yes at the end of the day it was from the children’s hospital in London after going backwards and forwards there for six or seven months they said, yes we think definitely autism.
 

Tracy experienced ‘waves of euphoria and fear’ when her daughter was diagnosed and still feels...

Tracy experienced ‘waves of euphoria and fear’ when her daughter was diagnosed and still feels...

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Can you remember how you felt when you had it sort of confirmed?
 
It was a fifty fifty thing really sort of ‘oh at last, but oh my god’. It is sort of … it kept going over in my head, at last, oh my god, at last, oh my god and you sort of have waves of euphoria come up because at long last you know, that you are not a neurotic mother, you know there is something and that everything you have been saying there is some truth in it but then when you sort of get those feelings out then comes, ‘oh my God what now?’ feelings. I was scared. I was scared. You feel a failure because you think you have done it.  And if you had done this, or if you done that, or … you know if I hadn’t worked right up until two weeks before I had her, or if I had ate more fruit, if I had done this, you go through this horrible, horrible process of guilt and even now twenty years on the guilt is still there because you still feel, just like a film you are watching this whole thing in front of you, a whole lifespan of somebody with this condition and you think they come from you so you should have done something to prevent that happening.
 
I am starting to accept there is nothing, the more I see now, the more medical advances and the scientists and more or less I am starting to realistically to believe ‘oh it is not my fault’ but you still have that bit inside you thinking ‘oh I could have done this’ or ‘I could have done that’. And then the process for me and I don’t know if it is the same for everybody is I went into overprotective mode. You know, and I sort of was hell bent on I was going to get what I want and I want it now sort of process that no doctor, or no headmaster or authority officer was going to tell me ‘no’, because I was full of anger and it was just like a process of so many emotions, anger, possessiveness. Thank God for that and it just goes over in circles, you get rid of one emotion and the next one comes and the next one and you seem to go back to the beginning and that first thought comes again, but after a few years it does subside. It is still there. I still feel guilty. I still feel angry. But whether I have learnt to control it or not show it or deal with it better, I don’t know. But a certain amount of anger because you do say, why me, why Nicola?
 
But the more you find out the more that you realise that it is one in five children so it isn’t only you, it is only Nicola. And you can’t say ‘why me, why Nicola?’, because there is so many more out there. And thankfully in our case Nicola is borderline; on the disorder spectrum she is mild to moderate. Whereas some of the children that Nicola has mixed with or I have come into contact through the years would be on the maximum top end of the scale and I don’t know. I just don’t know how I would have felt if it was that.
 
So lots of the time I lay there, I lay in bed and I am thinking ‘oh why me, why me, why Nicola’ and then I think ‘well it could always be worse’. So the emotions are still in turmoil. It is still up and down, up and down, good days, bad days and then now Nicola has got older and this is terrible, I shouldn’t say it, and I shouldn’t even feel it and I know that I shouldn’t feel it, but I think to myself, ‘oh my God this is the rest of my life?’ and how bad is that? A terrible thing to say because I shouldn’t feel it, but I do and I can’t help it. Some days I feel very angry because this is the rest of my life and there is never going to be a time when Nicola doesn’t need me.
 

Tracy’s daughter used to be on melatonin and will wake up about five times a night to ask...

Tracy’s daughter used to be on melatonin and will wake up about five times a night to ask...

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She doesn’t sleep. She has never slept from when she was a baby, a very tiny baby and we had her on melatonin for a year just to get her through her GCSEs but I was so scared she would become addicted to that. Melatonin is a sleep drug, which can only be prescribed by certain doctors in this country because it has only just become licensed and… but I didn’t like the idea of that. We done it to get her through her exams. But we’d go to bed at ten and during the course of the night we could get woken up about five times [sigh] and she will come in and she will say something along the lines of, “In three weeks time on Sunday, what are we having for dinner?” “I don’t know.” That is the quality of the question. It is nothing urgent. It is nothing that can’t wait, but she doesn’t know that. She just comes and asks. Or she will say, “I know what I meant to tell you, three months ago on the bus I saw so and so and so and so.” And it has just come into her head, so there and then she has to say it. She can’t have the thought process of waiting until the morning. So I supposed sleep deprivation is the hardest, the hardest thing. And that is like nineteen years now.
 

Tracy thinks she and her husband have lost their identities a little although they are strong as...

Tracy thinks she and her husband have lost their identities a little although they are strong as...

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I suppose me and [name] we are, we must be reasonably strong as a couple because we wouldn’t have been able to withstand the things that have happened. I mean a lot of people would have given up I think. But what I will say is I think we have lost our own identities a little because everything is focused on Nicola, everything we do. I mean I know like when you have kids your family life does centre around the kids but it does seem to be a bit more magnified when they have got a condition and we wanted to come away from London and move down here for example, but we couldn’t, because we had got her into the school and we thought well we can’t risk that we are not getting her to another good school there. So we waited and waited and waited.
 
I have always had a certain independence streak, I always wanted to work but my work has always had to … I never felt comfortable, well I did have one experience and she touched on it and it didn’t work out. So I have always had to work around Nicola. I did nights just stacking shelves for years and years because I would be at home in the day. So yes my career path couldn’t develop and on a day to day basis it's … I can’t go to work because of Nicola, I can’t go shopping because of Nicola....
 
It is that sort of life that we lead, it is very regimented and it is based around Nicola. and she never loves both of us at the same time. I don’t know if that is Nicola or whether that is a very strong characteristic that they can’t share their feelings. It's, I love daddy this week. Don’t want to know you mum. Next week I love you mum, can’t stand my dad, don’t want to talk to him, don’t want to be in the same room as him and it can cause conflict.
 
I mean we didn’t know for a long time this is what was happening. We didn’t realise but now as you sit back and you analyse I think that it is that she focuses on just the one thing and all her attention will go onto one of us and not the other. She can’t have that divide where she will treat us both equally. So while the parent that is being all loved up, is being all loved up the other one is pushed out and the one that is being all loved up is stifled. And it can cause a bit of friction, like a three way friction. It is not bad, I mean we are not falling apart at the seams, but it is irritating. And we feel as a couple, that, I think sometimes we feel we are not a couple because I don’t know what I am trying to say, it is like babysitting duty, it will be all Nicola one week for one of us and the other one is left out in the cold and then it is the other way round and it is hard to have ….
 
I think all that we would want, if we was to sit down and you asked us that, all we would want is for us to be a three, unconditional three way thing and that is the end of it but it doesn’t seem to work like that. Can you understand what I am trying to say? So she can’t help it and we know deep down that she can’t help it but she causes a divide and it is hard, but … well we are still together, we have been married coming up 21 years now and I suppose we have just got used to it. It is just that is our way of life. But it is hard to function. You don’t feel like a proper united family because there is always, this is a good way of putting it, this push me, pull you atmosphere. But we don’t know any different really I suppose so. Us time is a bit lacking I think because a lot of the time we are just so exhausted, mentally drained, and you go to bed and you just don’t even talk because you just can’t think, let alone talk you know.
 

Tracy would like a support worker who she could contact even if it was only once a year.

Tracy would like a support worker who she could contact even if it was only once a year.

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I never had a social worker because didn’t really know if I needed one, never knew if I needed on. My GP in London was fantastic. I can’t praise him enough, he pointed me into so many directions, I mean regarding, I didn’t know until Nicola was about eight or nine that she could have Disability Living Allowance, I didn’t know nothing about Carers Allowance, so that is the thing that is lacking. The government, there you are look, strong point, my voice has gone … the government don’t tell us, us the carers, they don’t tell us enough. Okay they don’t want to give us nothing. They don’t publicise that you can have this and you can have that and we are here to help you. Well they should. That is any government, not today’s government, that is right across the board. Okay. Edit that out if you don’t want it in [laughs].
 
Sorry, they don’t. They don’t tell us anything. So there you go this is what we need. We need the government, we need… I think we need a minister in charge of … You have got them in charge of education, you have got them in charge of home affairs, we need a minister in charge of carers and disability to get out there and to tell the people what we need, what we can have and then ask us what we need because they don’t do that. Well the local authorities are starting to. There is a lot of steering groups now and I have done a couple. I have been on a couple in Devon where they do use carers when they are forming papers to say this is going to happen or that is going to happen, so again a very slow process but they are starting to use us a little bit more because we are doing it and we save you thousands, and hundreds of thousands of pounds every year, so come and see us, ask us. Please [laughs].
 
Yes. No. the government need to [laughs] … in all honesty the government need to look at us and say well we should tell them what we can do for them. I believe in that. I am quite a capable person so I never felt I needed a social worker as such but I do think, not one that is going to be in your hair every five minutes, but maybe you could have a support worker. You might not speak to them for two years, but then at least then you could pick up the phone and say, in this situation, I don’t know what to do. Even a support line maybe, not even if you don’t have support, individual support workers, because that is very expensive to do that. But a lot of the help or a lot of the advice that we do get is charity based, sorry, helplines like Mencap and NAS, which is the National Autistic Society, not actually government funded or local authority funded.
 
So I think in that sense we could do with more support when we could just, as I say, you might go ages and ages and not need anything but just to say you can ring this number and say “what do I do?” “Where do I go?” “Who do I speak to?” is good. I mean a lot of families do need the more stable secure support. That is fine but not everybody does and it seems that if you don’t and you might only need the minimal support, then that is not there. They are either going to give you full blown where they literally live in your house or nothing so maybe finding a happy medium.
 

Tracy describes Nicola’s Further Opportunities Programme at college.

Tracy describes Nicola’s Further Opportunities Programme at college.

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She is in the special needs unit, or it is called FOPS at college. It is Further Opportunities Programme or something is, I don’t know what the S is I can’t remember. And so within this programme itself it is like a college in a college and so they have different levels of different ability, i.e. Nicola is one ability, and then they might have the more advanced autism or they have got Downs or they have got ADHD so they … and basically the whole programme on whatever level you are works from Our Skills for Life and then it sort of branches off into loads of different things compared… and then they match you your ability to the section that you do.
 
Nicola first of all, when she first went, she done, she went to go to do GCSE art because she had done it in school and not got a good enough grade that could be classed as a pass, so we said, well you can do again if you want, do it in the college but she couldn’t keep up because they were going at such a rate, because the college year is shorter they had to condense the work into a shorter space of time. So the prospectus was the same amount of work that she had but in a smaller… so she couldn’t keep up basically the rate they were going so they took her out and put her into the FOPS, the Further Option and there she had done like computer studies, English, maths, at the moment she is doing like a child skills programme and basically it is all to do with might they might need if they ever go independently and she will have various B Tech certificates and things.
 
I don’t know if they actually mean anything in the outside world but she will have something for her to say well I achieved this, I achieved that yes, but it is like a college within a college. It is a set up and in there they take all disabilities whether it is like a mental disability or a physical disability, or they are all mixed together. It is good because they all understand that everybody has got a problem that is around them and that is far as it goes and then they can just acknowledge it but leave it at that you know, and there is nothing more said, which is good.
 

Tracy explains the statementing process.

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Tracy explains the statementing process.

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Statement process is for schools and the local authority that govern the schools to decide what the individual child may need and it is a rigorous process of assessments and doctors and specialists and professionals and it can go on and on and on for years. And I do believe, because again in Nicola’s case it was 15, 16 years ago and I do believe now, I don’t want to scare anybody, that that process has been condensed and it is a lot simpler and a lot…. It still takes time, but it is not as time consuming and they do get the help quicker because they have got a better process of doing it. And basically all the independent agencies that you might have, like a speech therapist, and a behavioural specialist and like in Nicola’s case a  doctor and they all do their own individual assessments and then through the local authority it is all pulled together and then they decide, they make one big report and they decide what the help they think that the individual child would need and the provision that they can provide and also the statement gives them the authority to either obtain the money and spend the money. Without a statement the child cannot bring the money into the local authority. I think that is a way of explaining it.
 

Tracy describes how Nicola is very capable but she is not sure whether she could live independently.

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Tracy describes how Nicola is very capable but she is not sure whether she could live independently.

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Well in our case, in our particular case, and it is not in every case unfortunately which is very sad, but in our case Nicola is capable. She can achieve and she has proved that she can achieve and I get very sad because while I am here to kick her up the bum, so to speak, she will achieve and she will do but if that stops, for whatever reason I can’t do that, then she is just going to fester away and it is a shame because she is a bright spark and she has got so much to give. But I don’t know how to sort of teach her the independence now that maybe she doesn’t need me. Or does she need me. I don’t know.
 

Tracy has found getting her daughter to shower and to change her sanitary towel can become a ...

Tracy has found getting her daughter to shower and to change her sanitary towel can become a ...

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And she is hygiene is not a very good thing. It is not a nice topic, but I think her hygiene, in autism generally they don’t like water and it is to get her to bath or to shower is more, in the later months has become a forceful thing. It is not willing and it is not readily we can have the tantrums and at 19 she knows full well if she wants to go to the toilet but she does stand there and wet herself sometimes and she will wet the bed. And I know that she knows, it is not a thing, that it's disability that it just happens. I know full well. And she knows and then she tells me she forgets, she knows she wants to go and then she forgets so it just happens but I don’t know. Maybe that is true. But going back from that onto the periods thing then yes, I have known to wear a sanitary towel for two days and I have had to say you know, and it is a forceful thing to get her to know that she has got to change that and it might be once every couple of hours, let alone every couple of days to get her to understand, but be it right or wrong I have a couple of times had to manhandle her not in a very violent way, but I have had to be a bit forceful and to make her, for your own hygiene and her own health to realise that she has got to do these things and I will say it is a bone of contention [laughs] in this house . She claims she is too busy, she has got too many things to do and that is the last thing on her list, bless her, but yes, it is not a nice process.
 

Tracy describes periods as “a bit of a nightmare” for her daughter and she still gets upset if...

Tracy describes periods as “a bit of a nightmare” for her daughter and she still gets upset if...

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Did you have any difficulties with Nicola going through puberty?
 
Hm. It is not a thing that was very easy. She didn’t embrace it. Periods were a bit of a nightmare. She didn’t understand it that was hard to get her to get to grips with that. It took a few months. Yes, no, it was just a bit of a … even now she doesn’t, this is where the sort of regimented side comes in because she thinks she should bleed the same day every month and she doesn’t take the factor in that some months have got four weeks, some months have five weeks, and we can have a bit of hysteria if the period doesn’t happen on that day of that month and to the extent of ‘oh my god I might be dying’ [laughs].
 
We have had that said a couple of times because it hasn’t… the function hasn’t occurred when it should and the body changes she didn’t like very much she sort of didn’t like to change, but we had to sit down and explain to her that it is not her, that everybody does it, it happens to everyone… it took a long time but she did get there in the end but it wasn’t a good process.
 

Tracy says it is scary that there is no structure in place to support her daughter.

Tracy says it is scary that there is no structure in place to support her daughter.

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She has had a post college assessment but then the system has just stopped, we have not received anything else to say, well the next step for Nicola is, or …Everything that we have achieved and that she is going on to, is what I have done and found out and sorted for her. But there is no, from what I can see there is not a very good structure in place with local councils and government for adult children … adult children sorry, adult people with learning disabilities or autism or anything of that nature. They seem to be sort of concentrating on the 5-16 or 5-19. That is fantastic. That is really, really good work done, but it goes on beyond that.
 
When they leave education they do still need that help and that guidance, even more so, I think, because there is less structure for them. It is a minefield, you know, you are treading… you are going blind every step of the way because you just don’t know, and they deserve the same quality of life as the next person and they don’t get it. They are changing the employment laws and they are doing a few things, just little bits to make what they think is going to make a difference but it is a very, very slow process.
 
And I worry now more so than when she was in education. Oh well she is still in education, but we have only got two or three months left. When that process is finished, that in my opinion, then comes the scary part for me, for her, for everybody in the family, because we don’t know what support there is or what will be available to her. They are not so hot on giving the information for adults with learning difficulties.
 

Tracy says “its not the end of the world… it’s a life changing challenge”.

Tracy says “its not the end of the world… it’s a life changing challenge”.

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Yes, they are loving, they are fantastic, they are beautiful kids, adults, whatever age they are. It is not the end of the world and just, as I said earlier in the film, to treat it as a challenge, a life changing challenge and you can grow with the person that has got the condition and don’t ever let it hold you back and don’t ever use it as an excuse because it is not. They have just got so much to offer and they will bring a lot of joy. If you embrace the situation and don’t let it get you down as I have done in the past you will learn a lot and see a lot, and I think overall if you try and just accept it as it is, you will, I don’t want to say enjoy the situation, but you will get the most out of it that you possibly can and the whole core of that is accept it in the first place and move on.
 
And all I can say is things have got better and improved since Nicola was young and just challenge the system because the system will never change if people don’t challenge it and say that “this is not what we want” and have a users and a carers voice and do it and just … just get what you want, just get what you want for your child, or your person that you care for. And help them realise their potential, because they have got a lot of potential and a lot to give. And that is it. I don’t know what else to say because I am a lot further down the line than a lot of you probably will be. And it has been a bumpy ride but I am a much better person for it, I know that and in the future I want to tell people what I have been through. It is not all bad. I have got Nicola to show for the system and to show for what has occurred and as you will see if you see anything of her on the tape or the video that they do achieve. They do lead good, healthy, happy lives and as long as they get the help and the guidance that they need.
 

Tracy thinks autism is caused by genes and chromosomes that don’t mix.

Tracy thinks autism is caused by genes and chromosomes that don’t mix.

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My... for a long time I was veering towards the MMR but now I am not so sure. I think there might be a little bit of that still lurking in my brain, but I think it is genetic. And my own opinion and I am not a scientist, is that genes and chromosomes mix that shouldn’t mix. You have got me and Andy and what I am saying is I think our genes and our chromosomes are not compatible and as a result of that is autism, ADHD, whatever disability. Like chemistry, you put certain compounds together whoosh. So I think the same theory with genes and chromosomes and stuff. That is what I really do believe and then if that is true or something alone them lines is true, then there is no, we have got no control over that because how would we know.
 
And then if I go back to the MMR theory which I have still got a little percentage in my head is the same thing. That you are given all these chemicals and jabs and then in certain peoples bodies they have a reaction that might not happen in somebody else’s body thus is autism, ADHD, whatever you want to call, this is the reaction of chemicals mixing together. They are saying not, but I have got a little bit of about 10% of me thinks that is a possibility but the majority is genetic I think, genes and chromosomes that don’t mix.
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