Liz - Interview 2
Age at interview: 45
Brief Outline: Liz's son, Jonas, aged 11, has been diagnosed with epilepsy, ADHD and Asperger syndrome and Raphe, the youngest son, has Downs Syndrome. Jonas attends the local mainstream primary school but Liz is worried about the move to secondary school.
Background: Liz, 45, lives with her husband, a chicken farmer, and two of her three sons. Ethnic background/nationality: White British.
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Liz and her husband have two sons, Jonas, 11 and Raphe, 8 and live on a chicken farm. Liz has an adult son from a previous marriage. Jonas started having fits from the age of one but epilepsy was not diagnosed for six years when Liz sought a diagnosis abroad. After the EEG showed an epileptic focal point, Liz could access services in the UK. Once the epilepsy was under control by medication (a year after the original diagnosis), Jonas was also diagnosed with ADHD and Asperger syndrome.
Jonas is in mainstream primary school but Liz is worried about his progress once he starts at secondary school, because its size and the number of different lessons will be hard for Jonas to cope with. He is particularly good at maths and trampolining but finds other subjects difficult. He particularly enjoys a strategic computer game and Liz feels that this has helped his writing skills and has encouraged him to interact with other game players.
Though Jonas attends a social communications skills class at school, she finds that this does not translate outside the class and he can be difficult at home. He is very sensitive to smells, tastes and textures which can affect what he will eat and things like cleaning his teeth.
Jonas can be controlling of what the family do and she is keen to maintain a social life for the family despite his actions. Having a network of friends who share similar experiences is very supportive and it also helps to talk about her experiences.
Liz finds that if an outing, like visiting a friend’s house, is a success, getting her son to leave can be 'hell'.
Liz finds that if an outing, like visiting a friend’s house, is a success, getting her son to leave can be 'hell'.
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I mean we did a lot of problem solving in the last course, so a parent would say a situation that they would have. You know, “My child when they go to the shops with me will present this sort of behaviour.” So then we would sort of give ideas of how to minimise that sort of set up and I think it is a learning curve for all parents, because a lot of parents probably think they have to take their child shopping. I wouldn’t take my child shopping if you paid me to, but I have had to make that adaptation and the occasional time when I have had to go and get a pint of milk, he has stolen something so we have had another issue to sort out, but I don’t go and do my weekly shopping with my kids. I am not able to. Otherwise they would be, I don’t know whether they would be the ones screaming on the floor or whether I would be the one, you know. So just a simple thing like going into the shop and buying a pint of milk can present itself to be a big issue and that gets you down quite often.
You think you know you can’t go into a restaurant and have a nice family meal. You can’t go to a friend's house just on the off chance, you know, pop in and say hi and that because unless you prepare them that that is what you are going to do, you know they go, the whole thing goes kaput. I mean I have gone to people’s houses and I have said, you know, if he starts we’re going home, you know and sometimes he has been fine because he wants to be in a new environment but leaving the environment has been hell, down to having to pick him up physically from his arms and his legs and carry him out to the car because he just would not come. So then you have had a nice time with the family, everything has been fine and then the last minutes they will remember you having to drag your child out. So there is always those sorts of issues.
But I have learned. I have had ten years of it, so I learned to sort of prioritise a lot but I think when parents first have the diagnosis they don’t realise that they have to do that. You know you need to make yourself a group of friends that are accepting of the situation, not friends that will judge you by it. You need to do the same with your family and that is the hardest thing, you know having to sort of, you are not going to hang around with your grandmother if she doesn’t get it all the time, which is a pity. So you isolate yourself if you don’t consciously go and make that effort of meeting other parents and I think when parents are in all this mess how can they think of on top of that go and make friends you know, may be because I am social… I am very Latin, so the Latin side of me is saying, no, no, no, you won’t give it up. So I go and do courses, I go to support groups and you know, but I know a lot of parents that are isolated because they are drained you know they feel they can’t go out. So yes… it is hard.
Liz thinks that it would be like depriving her son of oxygen if he could not use the computer.
Liz thinks that it would be like depriving her son of oxygen if he could not use the computer.
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So at the moment it is computers and trampoline is the only things that he has kept for quite a while, going. Computers specifically you know if he couldn’t use his computer, I think, it is like depriving him of oxygen, it is his life which again, makes it difficult on the epileptic side of things.
What does he do on the computer?
Actually at school he can use the computer very well. They said he has got a very analytical sort of brain and he does know how to use the programmes properly and it is not just playing games, but when he is at home the one game he has played for two years now, which again, before if you bought him a CD of a game he would crack the game and then that’s it, he would never touch it again. But the one thing he is doing now is Runescape because again Runescape is feeding his imagination which he hasn’t got. He cannot sit down and play a game and imagine things, imagine a story and you know imagine that this car is doing this. He never did that, even as a child he never did any of that sort of play. It was all puzzles and maths and those sort of things. So Runescape has opened doors in the sense that he has to chop wood and make flint stones and armours and you know, he has to actually produce things and then obviously they have a battle, but he is talking on the internet with his friends who are all doing the same thing and every day is different, which again feeds the ADHD where you know they are bored of doing whatever they do. They can’t do one thing every day and stick to it, because it is just boring.
So it’s helped and it has helped also a little bit at school because not long ago he was made to sort of write a story and of course if you sit there and say, “Oh can you please write a story about this”, he has no imagination so he finds it very difficult to sit down and write a story. And what he did was he enacted one of his battles from Runescape so which in turn he wrote a very, very nice sort of page. So of course then because he actually sat down and did that work so nicely, they gave him you know points and he then got to read it to the head mistress. So it kind of boosted his esteem. So I am very torn because as a parent I don’t want him to be on Runescape and computers all day long, but equally it is his world and if he is not on it, his behaviour is then, you know, bad because he will be hitting his brother all the time and poking him and annoying him. So it has kind of worked for everybody really, but I do feel a bit guilty as a parent of letting him be on the computer so long [laughs]. So guilt is a lot of it.
Liz talks about having to fight for everything constantly and relies on antidepressants to keep her stable.
Liz talks about having to fight for everything constantly and relies on antidepressants to keep her stable.
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Yes. It is very exhausting, not just the fact that you have to cope with everyday life, you know, getting them ready in the morning, making sure they get dressed, go to school, pick them up, you know, take them different activities. But the actual fact that the whole day is spent by making appointments, trying to catch the MPs, trying to write letters, trying to chase appointments. You know it is a continual thing, and although I am really exhausted by it, I have realised that it is the only way that I actually get to get somewhere by going to different seminars, going to different meetings, you know, getting in touch with all the different types of people. It seems to, the networking seems to go quite well, but I know a lot of parents who don’t have the ability to do that and I really feel for them, because they are the ones that are falling through the net. A lot of the parents are very overwhelmed and I certainly have been very overwhelmed and the only way I go forward with it is I am on antidepressants and that was one of the questions we did ask our parents, “How many parents were on antidepressants just to cope in our every day life?” And everybody put their hand up. At some point or other they had been on antidepressants.
Normally you know if you have got a problem you try to solve problems, but our children’s situation is an ongoing thing, so it is not going to go away from one day to the other. So it is the fact that you have that sort of worry and that sort of fight for everything constantly. So unfortunately having to go on antidepressants is one way of keeping you sort of stable, because otherwise you would just crack up basically.
I have had to up the happy pills, that is the seriousness of it, is that you know, first of all I was on a small dose and it was okay for a year, but then I started finding myself going again and it is not just the mental exhaustion, but it is also a physical one. It affects, you just cannot… you get up and you just think “aaahhh”. And I look at something and I think oh that needs doing and this needs doing and then I can’t. But then I am dyslexic as well so probably the fact that the stress is probably causing that worse. I mean I had treatment as a dyslexic and I don’t write upside down but I used to, but I find that in this last ten years where I have had all this stress, and it is not just stress some days, it is stress all the time that lots of other things have gone worse in me coping, doing things in order, you know forgetting, I forget everything, I mean I have to write everything down.
All those things have got a lot worse than they were before. So it is affecting my health as well and if I am not well, this family would be in bits really, because my husband can’t cope with it either. So yes I have to keep, I think it is the fact that you have to keep on, you know I am not allowed to be ill. When I am ill everybody is like oh what am I going to do? And sometimes I might have a migraine and I still have to get up and still have to do things because they are not self sufficient so, yes.
Liz thinks it is important for parents to be part of a support group in order for their voices to be heard.
Liz thinks it is important for parents to be part of a support group in order for their voices to be heard.
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I can understand how professionals sometimes feel a bit intimidated with a room full of these parents, because you know they think they are going to attacked… because everybody is very passionate about it. And it is very difficult not to be emotional about it, because it is your child that is in question. But I think the main thing these parents need to do and I really recommend it, is to be part of a group, you know you can set up your own support group and really be voiced and heard as a group rather than individual cases and we have gone to meetings with county and everything and we have written bullet points of the difficulties we are having so that will keep us in focus with the subject. And we try… you know occasionally we have had to give an example of one of our children, but we try not to get personal as well. I think if you are in a meeting and you start getting very aggressive, it just goes wrong. You need to be very professional and I think if you are not able to do that just yourself, there are groups out there that can help you. There are representatives that can go and speak for you, you know. The groups that you use to be able to do the statements for instance, you know there’s legal centres as well, children’s legal centres and things like that that they can just advise you and be able to put some order in all the issues that you have.
I think because we have so many issues that it is difficult not to start sort of blurting them all out at the same time and everybody giving their example of you know, they went to school and the headmistress did this, and you know so you need to really contain it in a very sort of professional manner and then sort of discuss it like that and you get a bit more input on it.
Liz would like support to help her to react more appropriately to the behaviour of her son.
Liz would like support to help her to react more appropriately to the behaviour of her son.
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Yes, so I think sometimes we really have to remind ourselves of that, you know, you are dealing with a child… it is like telling a 7 year old everything about sex. You know, you know what he is going to say, and everything is like that and I think we know that there are problems, but from actually knowing it and actually taking it on board and being able to see the behavioural things that he does as part of the condition, I am still struggling with that.
I know everything there is to know about it, but when he goes and does certain things I still can’t stand back and sort of look at it and think well that is the Asperger's side of his interpretation of the situation. You know my first reaction is ‘don’t do that’. You know so I am still find it, me personally, some parents once they get to know that, they are very clear, they are able to adapt their answer and the way they carry their discipline. I put my hand up, I haven’t been able to do that and I think my husband hasn’t either and may be that is why we need more support. But I have been honest about it and I have told the doctors you know, I am kind of like stuck on that. And yet I know as much as I can know and I did lots of courses and things but I still can’t separate that.
I still kind of expect him, if I ask him not to do that, to stop. So it is a tricky one. I mean obviously as parents we have to cope with our own problems as well, you know, I know I am not perfect, so that has been a hard one. And I think lot of parents probably are like that, although some are able to sort of … I think the younger you start everything, I think that is the other thing, if at the age of two when they wrote that comment about him in the autistic spectrum, if we had had all the knowledge and the support and the things that I have gathered knowing now, as a two year old he would have been better at controlling the behaviour thing, because you would have put certain, you know, a 2 year old you can into play, you can distract him with another toy, you know, all those tools that they give you to do that. But when it is an 8 or 9 year old who has got a brain of a 14 year old, you know 12, 14 year old, his spelling, his maths, his everything up to 12 years old or older still, it is very hard to discipline that. So I think I have been so busy trying to prove what is going wrong that I haven’t actually had the chance to try and train myself into how to handle when you have a certain situation. We are getting there, but very slowly.
Liz's son with Down's syndrome learns by copying and does not have a good role model to follow.
Liz's son with Down's syndrome learns by copying and does not have a good role model to follow.
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How would you say it has affected his siblings?
Very badly because his sibling is Down's syndrome so the Down's syndrome sibling needs a good role model really because they learn all visual and they learn by copying, so Jonas having the ADHD side of things and also the Asperger's, he needs to be poking him, and hurting him, and feel kind of cruel to him, which in turn makes us having to tell him off more often. And that never stops. I am sure he does love his brother because when he is not around he does sort of miss him, but he is continuously tormenting him, so that makes a really difficult environment for his brother.
The other day Jonas was sitting here doing his homework and my Downs syndrome son was in the playroom which is along there playing with some toys and he kept, instead of poking him and doing that sort of thing, he sometimes when he can’t poke him he will then torment him from this distance. So he was saying to him, “Oh [friend] is dead.” And [friend] is one of my son’s favourite friends, you know, so that was making him shout and going, “Nooo, nooo.” And you know he is continuously having to torment him so it makes it hard for him. He thinks that is the sort of behaviour you have. He has got nothing better to copy from.
It is affecting him in the sense that he goes back to school and with the TA and the teachers they get him back into the behaviour pattern of being kind and nice to his peers. Then we have half term, so he has had a whole week of being poked and tormented, so then he goes back to school and they have to start again to get him back into the swing of not lashing out. It is not that he is cruel himself, but it is just that if he wants somebody’s attention or he wants, you know he will lash out like his brother does to him because that is what he thinks you do. So it affects them both and it affects us because we are doing even more shouting.
Liz's son contains himself at school but has a whole day of tension and anxiety to release when he gets home.
Liz's son contains himself at school but has a whole day of tension and anxiety to release when he gets home.
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I don’t think you can just separate school as a separate thing from home because they contain themselves a lot at school because they know they have peer pressure and they know they have got to kind of conform and in a way they want to have friends and they do want to conform but then when they go through that gate, they have a whole day long of tension and anxiety you know containment of behaviour thing and we get it full blast at home. And I think we need to kind of amalgamate the school and home a little bit more with these particular children, perhaps not so much the neuro-typical children but yes with these children. I think that is the whole thing with these kids is that you can’t look at health separate from education, separate from home. It has to be a whole holistic view and that is why it is still very separated.
You know the education would say this is not an education issue it is a health issue and health will say it is not…. And what I have suggested in my meetings is that we get together because if the child has got a diagnosis like this, which is a health problem, how is he going to access education to his full potential, not just scraping through, but to the full potential if they don’t have the right support and I think that is what is happening is that some people are just scraping through and they all pat themselves on the back and say, oh you know, he has got through but that is not good enough really. Because my son has got the ability of being some whacky scientist probably or go up on a rocket you know somewhere to Mars or whatever but he won’t do it if he doesn’t have that support in doing his O levels or GCSEs or whatever they are called and that is my continual fight.
Liz found medicating her child difficult until a psychiatrist asked her if she would feel guilty giving insulin to a child with diabetes.
Liz found medicating her child difficult until a psychiatrist asked her if she would feel guilty giving insulin to a child with diabetes.
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He is – well he has been on everything but he’s been Strattera, Ritalin. Also they use the Epilim for the epilepsy, they also use some of that for the ADHD because it can control. And now he is on Imipramine which is three tablets taken at night time and basically what the Imipramine does is it helps him concentrate a little bit better but it mainly helps him to sleep and if he doesn’t take them he is awake because that was the other thing, that the first six, seven years, he would be up at three, up at four, up at two in the morning, you know completely wide awake. So you know it was affecting all our sleep patterns.
Then having another baby was like the baby waking up every hour and a half plus the child waking up as well, plus my husband having to wake up at 5.30 to go to work. So it was very, very intensive in that respect. We were all very tired. So I felt that although it doesn’t control his behaviour as much as probably I would like to, I think the fact that he is sleeping has got to be better, so that is why with the psychiatrist we are trying to stay on that at the moment, because I think if he has a good night’s sleep then you are able to cope with things better during the day, but I think during the day, he could do with having another one, but it is just the fact that it affects, it has other side effects. It could affect his heart beat, so that is other thing, is that you know you give them medication on one hand, and it helps with certain things but it could aggravate others and one of the things that the medication can aggravate as well is the epilepsy, so you are forever having to juggle this decisions and medication is a very complex subject as well.
A lot of parents don’t want to medicate but if you don’t medicate when they get to be teenagers all the problems are a lot worse. So it is a very fine line, it is a very, very difficult one, and one that we feel guilty about as well. Until my psychiatrist said, “Would you feel guilty of giving insulin to a diabetic child?” This medication for the brain is for the chemical reaction in the brain so we mustn’t feel guilty. But you know you are always still borderline with that. So yes….
Jonas
Jonas
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How would you describe your son to me as I haven’t met him?
Lovely when he is asleep [laughs]. He is one to one perfect. He should have been an only child that could have had parents that could have given him 24 hours, because we have done the parental course of sitting down and playing with him. So you know we do half an hour play or an hour play of whatever he wants us to do, but he wants it 24 hours a day. And that is the difference between a neuro-typical child who would be quite happy to then go off and do some colouring or watch the TV, he can’t watch any video, he can’t keep still long enough. So that is where the computer comes in. So you know, he … because of the ADHD he is not very scared of doing dangerous things, so that is why he is very good at trampoline. When he throws himself on the trampoline, he throws himself very well, whereas his friends are still sort of a bit worried about it. So he is becoming extremely good at that.
He is extremely good at maths. He is extremely good at anything you do for the first time, he is extremely good at. What is difficult is finding something that he will then want to, you know, carry out with us, or be happy, just smiling would be quite nice. And in fact he has got positive chips you know and tokens for smiling because he doesn’t do it very often. So just being a little bit happier would be nice and integrating with us. The way I would describe him is that he is a body in the house that is quite happy if you leave him to it but doesn’t particularly want to be part of the house and that is very hard I think as a family that is very hard.
Liz's son has had his first sex education lesson at school and she has explained to him that these are not the sort of things you talk about in public.
Liz's son has had his first sex education lesson at school and she has explained to him that these are not the sort of things you talk about in public.
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Have you got concerns about your son reaching puberty?
Oh yes. He has just had, last week he had his first sexual lesson at school so he has taken it on board and I have tried to explain to him that they are not the sort of things that you talk in public, at the wrong time, so so far we don’t know how he has taken that on board, but yes, I mean because of the communications again. Because it was the school that did the sexual communication thing, he might have taken it on board a little bit better but if I tried to approach him here it would be like no, he wouldn’t want to talk about things like that. Or he will be very silly and he was being silly in the car, but I just kept saying, “You know Jonas you can’t go up to a person and just talk about these things at the wrong time.” I said, “You can talk about them at home, you can talk about them to a person if they are specifically talking to you about it, but not, you know blurt it out in the middle of the playground,” which he would do and things like that.
So I am just beginning to enter that stage so I can’t really tell you too much about it, because I haven’t really experienced it yet, but I am dreading it in a way, especially because these kids are very vulnerable. And other children pick up on this and they kind of get them to do the being silly thing and my son is always the first in the list, they all say to him oh do that ADHD thing you do, or you know, go and do this and he will go and do it, because he wants to be part of the group and be accepted. So they are very vulnerable in that respect. All children are vulnerable but children with these sort of issues are ten times more so.