A-Z

Rachel - Interview 8

Age at interview: 42
Brief Outline: Rachel's sons, Thomas and Matthew, have both been diagnosed with Asperger syndrome. They both attend a mainstream primary school with support.
Background: Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.

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Rachel and her husband have two sons, Thomas aged 9 and Matthew aged 6.  Tom was a very restless baby and was fearful of things from an early age.  His motor skills were poor and while he knew a lot about some things, like dinosaurs and Thomas the Tank Engine, he would also play obsessively with playdough and disliked wearing clothes with zips or labels.  He was very difficult to take anywhere and hated physical contact with people.

Before the diagnosis, Rachel and her husband could not make sense of Tom’s behaviour and blamed themselves.  This was very hard particularly because the family were getting no advice or support.  When he started school, his difficulties became more apparent and Rachel went to the GP who referred Tom to the paediatrician.  He was eventually diagnosed with Asperger syndrome and this was a huge relief to Rachel and her husband.  Tom has now been statemented, he is getting on well at school and is learning to manage his fears and anxieties. 

Matthew was a very different child, a very confident, cuddly toddler.  He didn’t really play with other children however, and when he started school, his confidence dropped and he became very isolated and anxious.  He was diagnosed more quickly than Tom and Rachel felt very sad at this point.  Matthew is in the process of being statemented.

Both boys have heightened sensory perception and find lights, noises, smells, textures hard to cope with.  Rachel has gone through a process of desensitising them which has been helpful.  Both boys found toileting difficult and regularly get severe nightmares.  They are very literal and so Rachel and her husband have learnt to talk to them in ways that they understand.  They are very close to each other and enjoy similar interests such as Star Wars, computer games, animals and trampolining. Thomas wants to work in a zoo when he is older, Matthew wants to be a Jedi.

 

Rachel’s husband can no longer look at play dough after their son spent hours making play dough...

Rachel’s husband can no longer look at play dough after their son spent hours making play dough...

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Tom, for instance, was a horrendous birth, a really, really difficult birth and then he slept after that for months and months and then one day at about three months he woke up and that was it; sleep patterns were out the window. He fed nicely but he was just a very stressed, restless baby. Right from an early age, his sleep patterns were disturbed. He was scared of things. For instance, we would go to my mothers and they have got an old farmhouse and they have got old beams and as a baby he used to sit there screaming of the beams, because he was scared of the beams. So from a very early age he was fearful of things and very anxious, a very anxious child.
 
He, let me think. He wouldn’t… his crawling and his motor skills weren’t great either. He couldn’t catch a ball and he couldn’t crawl properly. I had to take him to one of these classes to help him crawl. He wouldn’t do any arts and crafts but all he would do was playdough and we would get this playdough and these little animals and we would make the animal stamps out of the playdough and then he would scrape the faces off. And he would do that for hours. My husband can’t look at playdough any more because that is what he would do - scratch the animal faces off these little animals - and he would do that for hours and hours and sometimes we would think he was some sort of genius because he knew his alphabet at two and a half and he had encyclopaedic knowledge of Thomas the Tank Engine and the Telly Tubbies and then it moved on to dinosaurs and at three, three and a half he knew every dinosaur there was, which period they fitted into, Jurassic or Triassic or whichever period they fitted into. He knew everything about dinosaurs and we thought he is brilliant and that is why he finds things so difficult.
 

Rachel was relieved to get the diagnosis but then found herself frightened about the long-term...

Rachel was relieved to get the diagnosis but then found herself frightened about the long-term...

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Yes. I went into the school and it was such a relief. They were lovely. And they said, my nephew had just been diagnosed with severe dyspraxia, very severe dyspraxia and we worked out then that there was some emotional connection with severe dyspraxia and Tom had some signs of dyspraxia and I thought that is what we are going in for. That is great. And of course it wasn’t. And I went to the GP and his son is actually autistic. The GP’s son is actually autistic and I said what the problem was and he went, “That is Asperger's.” But of course it took quite a long time after that to formally get the diagnosis. We ended up going to [name of assessment centre], first the paediatrician and because it was our first child it seemed to take a long time to get a diagnosis for Tom because they had no history of him. And then we went to [name of assessment centre] because they wanted a full diagnosis to make sure they were absolutely right and that is when they gave their diagnosis.
 
It was such a relief to get that diagnosis. It was like OK that is fine. That is just what it is. Thank you. Just tell me what it is. It was a big relief to get that diagnosis and obviously I’d done a load of reading, a whole load of research and we had also, my family had also paid for some people called the [name of therapists] who are based to come out and [name of therapist] the OT came out and it was just brilliant. She said, “This is what you can do to desensitise him. This what you can do to help him with his toileting. Don’t protect him quite as much as you are,” which I haven’t since then and it was just… they were just brilliant, they were just brilliant.
 
So as soon as he got to school and the school started identifying the problem we were able to deal with it and just life just got better from that minute on really. I mean it was hard, it was frightening. It was just horrendous. It was so frightening to think that he was disabled and what was going to happen to him. It was terrifying, but you as time has gone on you kind of get used to it to an …. Well you don’t get used to it. You think you are getting used to it, and then he stops eating and you know something always comes up. When they first told me there was a problem and I realised it was autism, it was like this big hole and you were going to fall into it. It was just horrendous. But then they are just your kids aren’t they and you kind of get used to the fact that it is not as bad as that. It is not as bad as that. They are just your children and it is going to get better and it did.
 
When Matthew was diagnosed it was just really sad because we thought we had one that didn’t have Asperger's and when we found he did we were just really sad. But you know, then you think just get on with it. But not so much now, because again you just get used to it and it is just day to day stuff isn’t it and you kind of get used to it. But it was very, very sad.
 

Massage brushing helps de-sensitise Rachel's son's hypersensitivity to noise, smell and textures.

Massage brushing helps de-sensitise Rachel's son's hypersensitivity to noise, smell and textures.

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Tom is, they are both hypersensitive...their nerve endings, you know, Tom can smack the top of his head and not feel it, but if you try and cut his hair which means pulling his hair back every nerve is like pins and needles going through his head. So if you brush his hair or cut his hair you are like causing pain as soon as you pull his hair back but if you smack him on the top of his head he won’t even notice you have done it.
 
They are overly sensitive to noise, to smell, to texture... everything … and to light, their eyesight as well. And everything is like much more intensified for them and much more painful and much more difficult to deal with. And so when there are loads of people around them, it is all noise and bustle and people jostling them and their clothes are uncomfortable, it just all adds to their fear and they are not able to cope very well with crowds, and so there are massage techniques you can use on their head and their bodies and using different kinds of massage brushes on them in the showers, I used on both of them in the showers to de-sensitise them on their hands and fingers, put my hands through their hair, and you gradually put massage brushes through their hair, just to kind of de-sensitise and by doing these massage techniques you gradually start to de-sensitise physically their physical sensations.
 
I don’t know what you do about noise. I think, you can’t, I think they still don’t like loud noise and they still don’t like sunlight we just have to buy them a hat. But when it comes to clothes you can do that through massage which is what we did. So Tom can now have his hair cut. Matthew can’t yet, but Tom can have his hair cut without too much pain but again the clothes have to be comfortable that is where you have to buy them soft, no zips as we say, soft clothes and no hard waistbands or anything like that.
 

Rachel thinks that cod liver oil has improved her boys’ concentration.

Rachel thinks that cod liver oil has improved her boys’ concentration.

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Have you tried anything with their diets?
 
No, because they never had… Well they are funny about their eating but we have never had a problem with them having anything that is going to affect them. So we have never had that. We do give them cod liver oil because I do think that helps with their concentration and they have that regularly. Apart from the you know, odd fads, like one won’t eat potatoes in any form, and one won’t at the moment eat anything solid. They have their funny little ways. One will eat one thing, one won’t eat something else unless … you can’t have anything touching. Matthew has to have everything on the side with sauce on the side. Tom will only have certain kind of sauces with all food and so they have their funny little ways, but they never have had food that affects them food physically like that.
 
Tom used to have that with Coco Cola, not that he has Coke very often, but when he used to have full on Coke, I used to give them caffeine free, my dad used to give them normal Coke, and we would have a running dervish round the room. But that doesn’t happen any more and we have been lucky when it comes to food and they have been fine.
 

Rachel describes a trip to the shoe shop with her sons.

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Rachel describes a trip to the shoe shop with her sons.

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On Saturday we had to go buy some shoes from [name of town] and the screaming and the tears and the crying to get him to leave the house was just horrendous, because he just cried and cried and cried and he didn’t want to go to a busy city, [name of town] which is a moderate sized town but he did not want to go into those crowds of people and it took me half an hour of screaming to get him to get his shoes on, and I virtually had to force him out the door to get him there.
 
And it is the same when we try new activities, whether it is his drama club or his cubs that he has started. He still finds that really stressful. He says, “I don’t like the smell of the building. I just don’t want to go. I don’t know…” And even if he knows all the children there because they all go to his school, “I don’t like the oath of allegiance when we have to stand in a circle facing each other.” He hates that bit. He doesn’t like the feel of the toggle on his neck and he doesn’t like the smell of the building. And if something bad has happened on one week that is the one thing that he remembers. Of all the good stuff that has happened it is the one bad thing that plays on his mind and that stops him going back, so to get him to do these things is a really big struggle.  
 

Rachel's sons both have 'horrendous nightmares'.

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Rachel's sons both have 'horrendous nightmares'.

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With both of them their toileting was very, very difficult. It seems that was a frightening thing for them. So he still wets himself or he poohs himself, not Tom now, Matthew, but Thomas did at that age as well. It is very, very difficult and they have horrendous nightmares, screaming nightmares. Thomas will see things like dinosaurs coming to eat his face, monsters coming into his room, men coming into his room and killing his baby brother in front of him. Horrible. Matthew won’t tell me what his nightmares are but he just wakes up feeling frightened and he will be screaming in the early hours so one of us has to go and sleep with him or he comes into bed with us. When Tom was little one of us slept with him until he was about five, when we put them both in the same room and that seemed to help. With Matthew it is not every night but it is regularly that I go in and sleep with him because he has woken up feeling frightened and he can’t tell me what he is feeling frightened of.
 

Rachel’s son would not get in the swimming pool after the teacher said the water was ‘nice and hot’.

Rachel’s son would not get in the swimming pool after the teacher said the water was ‘nice and hot’.

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We were in the swimming pool last week and he wouldn’t get in the pool. Somebody had said, “Water is nice and hot,” and he wouldn’t go in. It took me quarter of an hour to get him close enough to the pool, because he is a big boy, so that his teacher could get him into the pool. But he just screamed, he thought… I said, “Do you really think I would throw you into a boiling hot pool, darling,” because it is full of other children who weren’t burning but of course he couldn’t make sense of that. When Tom was little we used to say, it's raining cats and dogs and he was so worried about our cat. He kept saying, “Where is Bluey?” and I didn’t get it. I didn’t understand, “Where is Bluey?” Now I say it is raining heavily. I never did that again. Oh he was so scared. “It is raining heavily Tom.” And he was terrified and it took me ages to work out, that he thought, he kept saying, “The roof, the roof.” And he just thought the rain was going to break the roof and break the house. He was really scared.
 
I took him, he was into Power Rangers, so I bought him a Power Ranges outfit, no it wasn’t, it was one of those super hero ones, ones with all the different flying machines. Thunderbirds. I bought him a Thunderbirds outfit and he got it and he cried all the way round the shop, and screamed and screamed and screamed. “I am ready to leave you mummy.” And I didn’t understand. “Baby, it is only costume.” But it is little things like that. And you don’t, when you have just bought them something and they are wandering round the shops and they are screaming and people are staring at you because you bought them what they want, and you think what have I done? It is obviously trying to understand about literalism, about what was going on in his little head. He was just terrified.
 
And he hated loud noises, and he hated dogs, because I know [laughs] not this dog. He hated dogs because they are unpredictable. It is something about their heads, the way they move, their teeth, he was just terrified, absolutely terrified of dogs and we used to take him to the woods, and he wouldn’t go into the woods. We have got a lovely big wood near us and he wouldn’t go there. He thought the bears were in there because he had seen some programme somewhere on Tellytubbies I think when there was a scary bear with rolling eyes and he wouldn’t go into the woods in case the bears got him. It was just little things all the time, you couldn’t really take him anywhere. If you took him to the beach he thought the undertow or the crabs would drag him into the water and eat him. Or everything. He was terrified of everything.
 

Rachel's son could not physically stand having her close to him when he was younger and has just...

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Rachel's son could not physically stand having her close to him when he was younger and has just...

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He loved needing someone to be close to him but he wouldn’t allow, he couldn’t allow you to touch him, it was like hugging a little board, he was so stiff all the time, and although he craved me to love him and hug him, he couldn’t actually physically stand me being close to him. So even when he was sick, he would sit like a board on my lap and play with my hair and that is as close he would allow me. I couldn’t put my arms round him. He couldn’t put his arms round me. He couldn’t face me or look me in the eye or anything like that. He was just stiff the whole time. So we got to the point where I would just massage his feet and he could stand that, but that is about all the physical contact he could stand when he was little. The last year or so he started hugging me, like arms round me proper hug, and he is nine now, so it is lovely. But it did take an awful long time before he could stand to do that and that was hard for him.
 

Rachel describes a typical Saturday at home with her boys which involves them staying in their...

Rachel describes a typical Saturday at home with her boys which involves them staying in their...

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Okay. They get out of bed really early, come down in their pyjamas and put the computer on and Tom wants to be a zoo keeper so he has got this game called Zoo Tycoon which is making your own zoos up. So the pair of them will sit there and play that or watch Star Wars, because we get to lie in now. My husband would go off and buy their breakfast which is usually chocolate doughnuts and croissants and things. And then the rest of the Saturday they will just play in their pyjamas and heaven forbid I should ask them to get changed. Sometimes if they are relaxed enough by the afternoon, friends will say, “Do you want meet over at the park”. Or we will take Bindie for a walk, and sometimes I will come out for a couple of hours or an hour or so and do that and then come back and just do what … and then sometimes by then they want to play a game with me. So occasionally we will play a simple game.
 
More Tom than Matthew. Matthew will just play his play station all day and not talk to any one if you gave him half a chance on a Saturday. We are mostly in our pyjamas eating and doing what you want. They play together a lot, so they are together a lot. They really don’t need us to play with them. They just want to be on their own or be together doing whatever they want to do. That is what they do.
 
And are they good at bedtimes?
 
They are, they are. I have got CD talking books for them in their rooms and so Matthew goes up and listens to Mr Wren and Tom will go up and listen to his or read his book in bed for a bit and then go to sleep. Neither of them go to sleep particularly early, but as long as Matthew has got something to listen to and Tom they will sit up there quite happily, unless they are very tense, unless… if there is a lot going on at school or they are very anxious they need us up there more often cuddling them, and helping them get off to sleep. Because often you find they are just in such a state and they don’t know why and they just need us to lie there and talk to them and cuddle them until they feel more relaxed and that can take quite a long time. But if they are relaxed they just go up and listen to their stories and go to sleep.
 

Rachel feels like a swan ' all calm on the surface but feet going ten to the dozen below ' as she...

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Rachel feels like a swan ' all calm on the surface but feet going ten to the dozen below ' as she...

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How have you remained so sort of calm?
 
It is like the swan isn’t it? It is all calm on the surface but it is not calm underneath. Your feet are like going ten to a dozen. You can imagine it. Yesterday I was sitting there and I noticed that Tom’s eyes are starting to twitch. They are starting to go up and back and I thought my God he is becoming epileptic or is it another … so it is another thing because you can’t let him know you are worried because everything will become… He is such a hypochondriac, as much as I love him, he gets man colds, the worst way. You can’t tell him that his eyes are twitching but you have to mention “have you noticed it happening?” without making a big thing of it. Everything, when you deal with them everything has to be calm because they will pick up on any anxiety and you go from a difficult situation, can escalate. It is like putting petrol on a fire, it will just escalate, so you train yourself to becalm around them, I think.
 
But I mean obviously they are sweet boys and I can see progress in them and you have stay like that. And it hasn’t always been like that. There have been points where I have been really, really not coping, but it is, you know. You just have to do your best.
 

Rachel felt too tense to carry on working. Not working is “a bit odd” because she has always...

Rachel felt too tense to carry on working. Not working is “a bit odd” because she has always...

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You said you had given up work. Did you plan to go back to work when the children were grown?
 
Yes. I mean I just gave up work because it was just so tense and I knew Tom would have acute problems settling in to school. I didn’t quite know how many. And my plan was to give up for a year or so and then go back when things had calmed down and he had had me at home for a little while, but no… And then I thought well in a few years… I thought if Matthew hadn’t had Asperger's this period of time between now and Thomas going to secondary school I would have got a little job for a couple of years. Obviously I can’t do that to Matthew because he needs me ever so calm in the morning and calm in the evenings and there’s a lot of appointments for him as well, but I think eventually I probably will go back to work. Mind you they don’t make it easy for social workers to go back any more so it depends if they still want me then. But my plan was always to go back to work eventually. But right now they’re my priority. So this is what I do. It is just getting used to the idea of not working is a bit odd I will be honest with you because I always did. So being at home all day is very, very strange.  
 

Rachel sees the future negatively or positively depending on what kind of day she is having.

Rachel sees the future negatively or positively depending on what kind of day she is having.

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How do you view the future?
 
It depends what kind of day I am having. I will be honest with you. When we discuss Tom’s statement I am not quite as positive because everything is so negative. I see two ways. I mean I see him going off to college and doing really well and having a relationship with somebody that sees him for the sweet, lovely, honest, straightforward boy, not one that is going to be saying something one minute to get what he wants and then running off. Somebody who is going to be honest and straight and love him for that.
 
And then at other times I see how much he struggles in school and then I see him still living at home when he is 40. But I don’t really, I don’t really mean it. I think he will probably find his way. He has got that determination that he wants to find his way in life and he wants to progress. He says that. He wants to be a zoo keeper so he is going to go and working Australia Zoo with Steve Irwin. “And I am going to live in Australia aren’t we mum?” [laughs] “All right sweetheart.” Because my husband is Australian, so we can actually go and live there. Matthew is much younger and right now he just now to be a Jedi [laughs]. I don’t think he is really going to get that wish [laughs] though he is practising a lot.
 

Rachel thinks her son will have a hard time with puberty because he will be bothered by bodily...

Rachel thinks her son will have a hard time with puberty because he will be bothered by bodily...

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Is there anything on your mind about the boys going through puberty?
 
Yes. It is the girl thing. It is. It is the girl thing and all that trauma of does she like me, or does she not, and this pressure at eight or nine, have you got a girlfriend or a boyfriend and that is at eight or nine. So that is ridiculous. So imagine what it is like. And then his body will be changing and he will be getting wet dreams and he will be doing all these physical things you have to explain and Tom gets so embarrassed by himself and by his body and by the things that happen to him. He is going to find all those changes, and changes in his voice, all of that very stressful and then that is before you get into relationships with girls.
 
And as you get older the kind of friendships you have aren’t just playing beef and stick in the mud any more are they? They are discussing relationships and Tom is going to be at a disadvantage. I am worried. I am worried about him going into adolescence. I think that is going to be hard time for him.
 
Have you been given any information or …?
 
No. No. Not yet. But I have just joined [name of support group] which is the Autistic Asperger's Support Group which I need to send the forms off actually, so … and I do think that is a good resource. I think they will be able to advise because they do a lot with adolescence and young people with Asperger's. I a hoping I will get some more advice from them, but I am suspecting we will just have to go through it and see and hope he is all right at the end of it. I mean he is interested in animals and I am hoping to may be get him to do some voluntary work in a local zoo and things like that and give him some interests because I don’t fancy him out on the streets. I think he is going to be too vulnerable. There are children that go up and play on the estate and there is one or two children I wouldn’t trust him with. There are one or two children that just wind him up and get him to do things. So I will have to let him go but ….
 

Tom and Matthew

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Tom and Matthew

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I mean, I wouldn’t swap them for anything because I just think having them is wonderful. I mean they are really sweet boys. You get more love and affection and consideration from them. You know, if they know you are upset and they can tell by my voice, Tom will say, “You have got that tired voice mummy, are you going to shout in a minute.” “Well I might do.” Or, “I can tell you are tired mummy, if I could get up and do that ironing for you I would to make it easier.”
 
And he is such a sweet boy, you know. They are just very loving and they are very kind and they are clever and they are just lovely boys. They are really sweet. They have got their odd little ways of doing things but that just makes them all the more endearing so… I just think they are lovely. I wouldn’t swap them [laughs].
 

Rachel found that everything became ten times easier once her boys were diagnosed and health...

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Rachel found that everything became ten times easier once her boys were diagnosed and health...

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How would you describe your dealings with professionals over the years?
 
I’d say the ones that knew about Asperger's have been brilliant, I would. I think as soon as I got a diagnosis for my boys, dealing with everybody is ten times easier. When it is the dentist or the hairdresser or wherever you go, or when it is talking to paediatricians or anyone else, they have all been really good. All of them have been excellent. If you go into see a GP and you say, “He won’t want you to put that stethoscope near him straight away, he has got Asperger's.” They will immediately stop what they are doing and they will take the guidance from me or in some cases obviously they just know how to handle it. So I think since the diagnosis they have been really good. Since we have had the diagnosis and knowing they are autistic they know how to deal with them and then if somebody understands that then life gets easier. Occupational therapists have been great. Paediatricians have been great and my GP has been great as well. So, yes, very good.
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