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Amanda - Interview 29

Age at interview: 38
Brief Outline: Amanda's two children have both been diagnosed with autism. They attend a special school for children with moderate learning difficulties which they both enjoy.
Background: Amanda, a part time yoga instructor, and her husband have two children; Louis aged 5 and Georgia, aged 3. Ethnic background/nationality: White British.

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Amanda, a part time yoga instructor, and her husband, a catering manager, have two children; Louis aged five and Georgia aged three.  Louis reached the typical developmental milestones on time but when he was 2½ he stopped speaking.  He was referred to the child development centre where autism was diagnosed when he was 3 years old.  When Georgia got to two years old, her parents became aware that she hadn’t spoken yet and so she was also referred to the child development centre, where autism was diagnosed . 

Louis and Georgia are very different.  Louis is a very sociable, outgoing, loving little boy who loves having people round.  He enjoys watching DVD’s and will copy phrases from them repeatedly.  Georgia is a very independent little girl who loves being outside and playing with animals.  She doesn’t speak yet but can communicate what she wants quite effectively.  Both children are at a local special school where they are getting on well. 

Amanda was upset when she found out about the autism but feels that you just have to get on with it.  She finds her children fascinating and feels that her appreciation of their achievements is wonderful.  Amanda has found becoming involved in a support group a tremendous source of support, particularly because her family can do activities with other families in environments where they do not stand out.  She worries about what the future holds for her children but has a very supportive family.

We also spoke to Amanda’s mum, Janet, about her experiences of her grandchildren (see Janet’s story).

 

 

Louis and Georgia

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Louis and Georgia

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Anything. Things off the telly, films, anything. If he sees a DVD even if it is one of mine, he wants it on [laughs]. But he is starting now to show an interest in his … in our computer. He likes to go on the children’s websites and play on the games and he just… for a long time we were having to play the game because his fine motor skills weren’t too great with the mouse but now he has started to make the connection that that will move most things on the screen. So he is enjoying that.
 
Georgia would probably want to be in the garden. Naked [laughs]. She is a real nature girl. She is just…She likes her toys. A lot of the toys around here are hers. She likes sort of little figures and animals, especially animals. And she will do the autistic thing of lining them all up and having a little flap at them. But her favourite thing is, she would love a dog. Her favourite thing when we go anywhere and there is a dog, she just goes mental. She just loves animals. We went to a birthday party recently and there was loads of kids there and she just completely ignored all the children and was running round the garden with the dog, you know, and no fear at all. She is quite, in their face, you know it would have to be a real soft dog. But she loves going to the park, you know outside.
 
They both really love swimming. We take them to the local pool once a week and they love that. They both love going to like Kentucky Fried Chicken. McDonalds. And they can see them for like miles along the motor way. They can see one from a ten mile distance, see the M and that is. We have to find one. So … but yes. I am trying to think of anything else really.
 
Georgia plays. Georgia plays quite well with things, little intricate things. But she plays alone. She doesn’t play with other children. If I have got other people here she shows no interest in them at all really. Whereas Louis if he had a little friend here would follow them round and he gets quite upset when they have to leave. So he is more a people, he is more social whereas Georgia is more you know more withdrawn, but you know still has interests you know [laughs].
 

Amanda’s son recites sections from his favourite Disney DVD perfectly.

Amanda’s son recites sections from his favourite Disney DVD perfectly.

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Well we myself and my husband [name] we were older parents. I was I think 33 and he was 40 when we had our son Louis in 2001 and then we had Georgia 20 months later in 2003. Louis [to begin with seemed a very bright, I mean he still is, a very bright little boy. He spoke very early, you know he ticked all the boxes at the assessments but then when he got to sort of two, two and a half, the speech sort of stopped. It is funny really because he has got a lot of echolalia and he could recite great long reams from his Disney films, you know. I think his first sentence was ‘to infinity and beyond’ [laughs]. But he couldn’t ask me for a drink, you know, and he would just kick off and get upset and frustrated because he couldn’t make you understand. 
 
I didn’t realise, I had never even heard of autism. The only thing I had heard was that there was some controversy with the MMR injections which I had not had [laughs] because of that. I had not had, I had, I paid separately and we were referred to a doctor, who you know, said it wasn’t, it was a communication disorder and the triad of impairments he was showing. We then went through CDC which is the assessment process, you know, and he was diagnosed and we were, we were upset, you know, we were, you know, you feel like all your dreams for your child are over and you know what is going to happen to them. But you know we got him into a special school which is a brilliant school that we have locally.
 

When Amanda goes out with her son the general public see him as a spoiled brat whose mum always...

When Amanda goes out with her son the general public see him as a spoiled brat whose mum always...

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But it is quite difficult when you are out and you are out in the supermarket because you have got you know, the added pressure of everybody looking at you because what they see is. I mean, you can’t blame them, he looks completely normal. There is nothing different about the way he looks. And he wants a DVD and he is not going to get one and so he kicks off. So the general public what they are seeing is a spoilt brat whose mum obviously gives into him all the time. So we get a lot of sort of tutting and “Tut, if that were my child….” kind of thing. But often in the supermarket I have had to just… I have used the symbols, which sometimes they work, sometimes they don’t. You know sometimes I crumble and give in - I am only human - and other times I have just had to abandon the trip and take him back to the car and go home. You know, or sometimes you just ride it out and just let him, you know, let him throw himself round the trolley and just ride it out and let everybody look.
 
Do you ever say anything to people?
 
I do yes. Yes. I have got some cards that I keep with me that you can give to people. And they have got a little badge as well that I put on him sometimes that says, ‘I am not naughty. I am autistic’ on it; a little badge. So I think for the most part once people know there is a reason for it they are usually a bit more understanding. You get the odd one. “Oh they would have just been naughty in my day. There weren’t any of that autism in my day. They were just naughty.” You know which is not helpful really is it. But you know they are entitled to their opinion aren’t they?
 

Amanda’s son is very rigid about what he will eat and likes what she calls ‘autism fries’.

Amanda’s son is very rigid about what he will eat and likes what she calls ‘autism fries’.

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Have you changed their diets or tried anything like that…?

 
No. It is something I have thought about and I have read about it and I have sort of tried a little bit but Louis is very sort of rigid with his diet. There are only certain things that he will actually eat and it has to be the brand. Like if he likes Walkers crisps it will be Marmite flavour and he won’t have any others and if you try giving some others but not having them in the bag he won’t eat them. He needs to see the bag and for a long time he only ate noodles and what me and my friend called autism chips; the fries to go. They are in a box and they are in little compartments and every chip is the same width, the same size and you know that was all he would eat for a long time and we are gradually bringing other things in.
 

Amanda describes being exhausted by “being on high alert all the time”.

Amanda describes being exhausted by “being on high alert all the time”.

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But I have had to accept that they are how they are, you know and I worry about the future you know. I know I should probably just focus on now, but I do worry about what the future holds for them. You know, and them coming into being adolescent and adults that is quite scary. And I think when we are out and you never ever can switch from being a parent. You can’t sort of go to the park and just sit down and let them play. You have got to be… you have got to be sort of behind them all the time. You can’t ever sort of drop your guard. You know if we go to say a birthday party I can’t sit chatting with the other mums. I have to sort of keep an eye out for them that they are not going to go through a gate. Or they are not going to go and help themselves to a drink off another table or push you know, do something to another child.
 
So you are sort of on high alert all the time and that is quite exhausting. And you know it is full on from… they get up in the morning and from them going to bed, when they are in obviously. I am quite relaxed now that they are both at school. It is full on. You know, until they are asleep you know and then it is usually sort of half nine, quarter to ten before we have tidied up and we sit down and [sigh] oh [laughs]. But yes.
 
And other people’s attitudes sometimes but I think the people that care about us, are our friends and family are all pretty understanding and know what they are and they are accepted. But when you go, when you go to you know public places and to parties and things, people sort of look, you know and just you know that hurts sometimes. It doesn’t bother… I have to say it doesn’t bother my husband. He says he doesn’t care what people think. He knows how they are and that it is it. But sometimes it just gets to you a little bit, you know.
 

Amanda sometimes ends up snapping at her husband.

Amanda sometimes ends up snapping at her husband.

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It puts you under a lot of pressure. You know. I mean me and [husband] we find it hard. You never get a minute. It is like you are up in the night with them often. Louis sleeps in my bed most nights. He starts off in his own but by about 2 o’clock he comes teetering through and [husband] just gets out and goes and gets in his bed. He has given up I think. You are under a lot of pressure all the time and you know you have got to try and keep calm with the kids, because if you lose it with them you know, you are just not going to get anywhere. So you know, you do find you snap at each other a little bit and you don’t have a lot of time for the marriage as a couple. You know, it is quite hard to sort of… I mean we have got my parents who will baby sit and I don’t know what we do without them to be honest because you need to get out, you need to get out and have a break.  
 
But it has put us under a great deal of pressure. And we have had some tough… we will get through it but we have some pretty you know, tough times and you know you tend to take it out on each other because the kids, they can’t help it. It is not their fault. And you have got all this patience to the kids and your husband walks through the door and you had had them all day and who are you going to snap at, you know, the poor guy who walks in and I am like…. So yes, it is hard. But we are a team with them. You know we both know what they need and he is fantastic with them. You know he is pretty hands on and he came to the Early Bird course with me and my mum did too, to learn about it, so we are all sort of understanding what they are like.
 
Mum and dad are fantastic. Obviously they were gutted because they waited so long for grandchildren and to have these… you know mine were the first two to have this happen. But they are there for us all the time. You know they come and they look after them if I need to go to work, or you know, we want to go out or we want to clean the house occasionally. My mum, as I said my mum did the Early Bird course which really sort of opened her eyes. You know she understands quite well. She gets quite upset when we are out and people make comments. That really… I mean I have got rhino skin now, I don’t care. I mean I do check their behaviour. I don’t just let them run riot. But if people are going to think things, they are going to think things. I have got to put my kids first.
 
Well my mum can… I know it hurts her when people say things and she has always got a card at the ready [laughs]. My dad is the kind of really patient person actually. He really… and he just seems to have a knack with them both, you know, he is very calm and he doesn’t ever get stressed with it. I wish I had his patience really because he is just… and the effect on them is unbelievable. The calmer the person the calmer the child really.
 

Amanda fought to get her son into a school for children with moderate learning difficulties.

Amanda fought to get her son into a school for children with moderate learning difficulties.

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Yes. I will say you have to be. My concern, well me and [name] my husband were a little bit older and we are both quite, I won’t say bolshie. We know what we want and won’t be shall I say hookwinked into something we don’t want. We are quite, we can be quite assertive if we need to be. I have met people through doing Early Bird courses and things, much younger parents who have accepted things, you know, because I think the only problem is sometimes the education I will be careful what I say, they want to steer you towards mainstream, which to be honest for some children it is the best thing but I didn’t feel it was appropriate for my children, either of them really. I don’t think they would have coped very with it.
 
I don’t mind if they go in later, but you know, I wasn’t happy for them to start in an environment that they would find quite scary. So I think what happened with Louis, Louis was diagnosed as severe and he was put on his statement to go to a severe learning difficulties school and we went to see it, we went to see it and we just felt that there was a lot of children with a lot of physical disabilities. So a lot of the PE was quite limited there were lots of different disabilities, lots of different needs and the school that we visited, [school] where they are now, it is moderate learning difficulties, so it is a little bit more challenging and they have an autistic unit. And I think have something like 80% of the pupils there are autistic so it is much more specialised.
 
So we had to sort of go to appeal, get the statement changed, but it was no problem. You know. And then with Georgia the school is actually closing and they’re re-digging the special schools in this area. I think may be nationally, I am not sure. And I was told that well there is no point applying for [school] because it is closing and it is actually closing at the end of next year and I said, “Well she should get two years there. That might be enough to start her off and then you know see where we go from there.” But you know we put our case forward and we got, you know, we got what we wanted. So, you know, I have not really sort of locked horns with anybody. I just think you have got to be quite sure of what you want and you need to go and see the schools and you know not just go with what is put on the statement. You need to go and have a look.
 
You know take your child with you. See if you can see them in that environment. See if they will be – you know your child better than anybody, you know, and you have to just, you know, imagine that they are going to fit in there and they are going to thrive there. And they have. You know we have absolutely made the right choice, you know, I just hope when it closes we get something equally, but you know, I am sure we will. So [laughs].
 

Amanda has found joining a support group “essential” for her family.

Amanda has found joining a support group “essential” for her family.

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Do you get any respite care?
 
I have not at the moment because I have not really looked into it, because there is so little I think it is something that we are going to need to do. I mean my family want us to go on a weekend so they are sort of building up to Louis and Georgia staying with them so we can go off and sort of have some free time and be a couple again [laughs]. But I mean, yes, because it is quite new to us, you know we have only just sort of gone through the stages of getting them into school, statementing and all that. But we have had sort of, we do a lot with the support group, [name of group]. They do like sort of a playgroup that we go to. It is on a Saturday and my brother comes and my mum and dad come, you know, it is the whole family is welcome to come along and that is really nice because you are meeting other families and you talk and the kids are all ages.
 
So you go along and you are sort of tearing your hair out because your child is smearing pooh or something and then you talk to the lady sat next to you, whose child is sort of three or four years older, who has gone through it and they don’t do it any more and they can give you tips and advice, you know, and you realise it is not going to go on for ever. And they arrange trips day trips. We go to, you know they have playrooms in the pubs. We sort of hire the room just for our group so all the kids are autistic and their brothers and sisters as well. They can all run around and nobody is going to you know, you are not in that environment where other people are sat looking. You can just go and be yourselves and they are the days you can sort of sit a bit and chat to the other parents because you know, you know, you know that no one’s is going to be shocked by what they do. Yes. Sort of trips and things.
 
I try to get to see speakers and things and training and stuff but I have not gone into respite care yet. I am a bit reluctant really because they are so little. I feel like it is my job. But you know I am probably going to have to at some point. You know just to get a break really.
 

Amanda has been helped by a supportive partner, family members, a support group, yoga and wine.

Amanda has been helped by a supportive partner, family members, a support group, yoga and wine.

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How do you think you have remained so sort of calm?
 
[Laughs] Probably yoga. Well we are both … I mean [husband] is very positive about, my husband is very positive and just I don’t know really, you have just got to get on with it, you know. I think if you were uptight all the time and upset about it. I mean you have your moments obviously, but your life would just be a misery you know and you have been given these kids and there you go, you know, you have got to, but the yoga helps me a lot. You know when they have gone to school in the morning, I go to a teacher on a one to one basis. I have a little practice I do for about half an hour and that sort of sets me up for the day and then sometimes I do a little bit at night if I think I am not going to get to sleep because sometimes you are so hyped up by the time they are in bed you think I am never going to sleep tonight.
 
And just my family has helped to support. The group, the group I go to [support group] that were a real turning point, because I have got somewhere I can go and talk to people. You know. I think without that, I think if you didn’t have that sort of network of support, you would just feel isolated. And I am sure you could… and I mean just, like we try and get out even if it is something that we know that, even if it is something that is going to not be easy we still go. You know if we are invited the temptation is to oh no, we are not going to go, it is too much like hard work but we go, we go and you know if they are good that is great and if they are not, then we come home or we try and deal with it there. We have carried on… we still go on holiday abroad every year. We go on a ferry to France every year and you know it is stressful but you know you have got to sort of keep going doing things and you know try and get them used to … you know they are frightened of a lot of things and the world is scary for them but you have got to try and gently do it, you know get them out, get them doing things and keep on with it really. But yes, I am not sure how we stay calm actually, sometimes, yoga and wine I think [laughs].
 

Amanda was pleased with the information pack she was given.

Amanda was pleased with the information pack she was given.

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Were you given information at that point?
 
We wasn’t, we wasn’t sort of told that it was autism until the diagnosis. The doctor, you know, said she couldn’t rule it out, but they are quite reluctant to sort of tell you, you know, get you along that line unless they are sure. But once he was diagnosed we were given a pack, you know with lots of information, lots of details about you know local support groups, local authorities, and you know, different help he could get. We were given information about, you know, the disability allowances we could claim. But again I am not sure that happens everywhere. You know to be honest, I think in [town] we are pretty, you know obviously it is never going to be perfect but we are pretty well served. There seems to be a lot of help, a lot of positive things. You know, but you sometimes speak to people in other counties and you know they have not got access to the same things really.
 
And you didn’t know anything about autism beforehand?
 
No. No.
 
Did you start to read about it before the diagnosis?
 
Yes. Yes. I started to sort of – well we want on the inter… well I did know a little bit, because we had, the first thing I heard about it… because just before Louis was due for his MMR injection it was all on the telly all the time about that link that people had made so I knew a little bit. But the children that were shown and a lot of documentaries were very severe. And you know, I think, it scared me a little bit, you know. Oh I don’t want to happen to my child. So we went and paid and had separate injections and then it happened anyway. But I must say now that the fear I felt beforehand it is not, nothing as bad as you fear is it? You know it is not that bad. He will go to school. He will do things. You know, its… you have got to try and stay positive really as much as you can, and you know hope for the best. But yes, we started going on the internet but you just get absolutely reams and reams of things. It is too much. I think we looked for a while and then I stopped because I was just… I don’t know I was just making myself quite anxious about the whole thing so I just sort of, I will wait until you know, the diagnosis and then take it from there. Yes.
 

Amanda recommends support groups because it 'brings a bit of normality to it for you'.

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Amanda recommends support groups because it 'brings a bit of normality to it for you'.

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And I would just say to anybody with a newly diagnosed child is you know, I mean it is not every body’s cup of tea going to support groups, but just don’t be alone with it. You know. Go and talk to people, get out there. You know. You might think that you can’t take your child anywhere but if you go with a group then you know they do organised trips and things and you can go and you realise that you are not on your own. There is other parents and you will make some friends. There is other parents going through the same. You know I mean without [support group] I probably would be not as calm as I am today because it is just, they are at the end of the phone if you need some advice, they are at the end of the phone. You know it is just and I think what can happen sometimes is – and I found this myself, but I am quite determined no to lose all my friends who haven’t got autistic children. I am quite determined that that is not going to happen.
 
But it is quite hard sometimes to always be around kids that aren’t autistic because it sort of drives it home a little bit sometimes that your child is different and it can be quite upsetting. But then you don’t want people having to step round you on egg shells but you know if you can go to a group as well and be around other people you know you just feel like, you feel normal, you know, it brings a bit of normality to it for you. You are not in a group where your’s is the child that is always, you know, on the outskirts or kicking off. You know you are going to go to a group and everybody has got their own story and you feel quite normal, whatever that is [laughs]. I don’t think there is such a thing is there?
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