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Kirsten - Interview 43

Age at interview: 34
Brief Outline: Kirsten's middle child, Andrew, was diagnosed with autism when he was two. He attends a mainstream primary school in the mornings and does a combination of ABA and DIR therapies in the afternoons.
Background: Kirsten lives with her three children aged 9, 7 and 4. Ethnic background/nationality: White Scottish

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Kirsten is separated from her husband and lives with her three children; two daughters aged 9 and 4 and a son aged 7.  Kirsten went to the health visitor when Andrew was about ten months old because she was concerned about his behaviour.  He was climbing all over the furniture and nipping and biting people.  She was told not to worry because “you know what boys are like.” Andrew walked quickly, sat up quickly and could do jigsaws and shape sorters at an early age. The family moved house just before Andrew was two and Kirsten took him to the doctor who arranged an assessment straight away.  Within a couple of months Andrew was diagnosed with autism.

Kirsten was not surprised when they got the diagnosis and read widely on the subject.  Within a couple of months, Andrew was on a gluten, sugar, yeast and casein free diet and Kirsten had started ABA therapy.  The diet has helped with Andrew’s digestive problems and he began to feel pain which he hadn’t previously. 

Kirsten, who works as a supply teacher, ran ABA therapy with the help of local volunteers non stop for nearly two years until Andrew had learnt as much as she would expect of him at his age.  She is now running a part time programme; he attends mainstream school in the mornings and does a combination of ABA and Greenspan’s Developmental Individual Relationship model in the afternoon. Kirsten has found that the use of rewards works well to motivate Andrew and to reinforce good behaviour.  He also wears glasses with coloured lenses which have helped him to focus and concentrate on his reading better. 

Andrew likes climbing, swinging, jumping, spinning and bouncing on the trampoline. He has considerable sensory issues and has very sensitive hearing.  He does not sleep beyond 4am most days which is very tiring for the whole family. He has no sense of road safety and would eat what he could find so all the cupboards are kept locked and there are no cleaning chemicals in the house.

Kirsten feels she has learnt a lot over the past few years and she has made good friends with other families in similar situations.  She has separated from her husband but gets a lot of support from her family and friends.  She also receives Direct Payments and so can employ carers to help out at different times.  While the family do not do typical family activities like going to the cinema or days out, Kirsten feels that “it’s something you get used to” and there are benefits like not being caught up with wanting the latest fashions or agonising over football practice.

 

Kirsten runs on adrenaline all the time when she is out with her son.

Kirsten runs on adrenaline all the time when she is out with her son.

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When we’re out and about I wouldn’t go outside to town unless I’ve got someone with me. Preferably an adult but if not then his big sister because she can run, she’s a very, very fast runner because she’s had to be to catch him. Safety is very much an issue at school. He’s been in an infant playground within gates but now he’s going to be in an open playground so that’s another… shopping he still has to hold my hand for a seven year old boy holding my hand going round the shop is a bit much. I can let him on a good day he can push my trolley for me but I’ve still got to be holding the trolley or he’d be off. He’s very excited with it being the school holidays so Saturday he just took off in the supermarket, that was him twice, I just have to let go of the trolley and run and even his wee sister knows that should he bolt in a car park getting in an out of the car, she stands where she is. She doesn’t move, she stands with my bag because I just drop my bag and run and she just freezes and waits.
 
Road safety is a nightmare. He just has no idea that the traffic's dangerous so that’s why I always have someone else with me. In [town] there has to be two of us and I just cross any main road with Andrew without being on either side of him so when you’re out you’re running on adrenaline all the time. People think I’m skinny because I don’t eat much but I do, I eat loads [laughs], I’m always hungry but I burn it all off because I’m living on my nerves all the time.
 

Kirsten’s son wears coloured glasses to help his concentration.

Kirsten’s son wears coloured glasses to help his concentration.

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Andrew is completely opposite. He has super balance he can walk along the back of the couch and balance on it and balance on the narrowest kerb and he will walk on that. He rarely falls. But this is for his reading concentration and it should help with his fine motor skills as well. And virtually his eyes are just all over the place. Andrew’s eyes don’t settle on something and concentrate. He is just totally… but that is a sensory thing again. It takes him too much sensory input and he can’t focus on what is important and see what is best and see what he needs to be looking at.
 
So we went to [doctor] – now [doctor] is from [city] but he has recently, he has sort of opened a practice in … near, so he is part of the … he is still part of the week in [city] and part of the week in [town]. We have been looking for coloured glasses for about two years …we saw the programme on the Jackson family and they went to this chap [doctor] for coloured glasses and it took me two years to hunt down where I could possibly … we tried different appointments, we went to [town] and everything, no he doesn’t need that if he can already read as a five year old, he doesn’t need coloured glasses and things. So we eventually tracked down [doctor] who was opening a new practice in [town] which is half an hour away so that was good, so we have been several times to him. Once Andrew is a bit older he can get a more complex test, a more specific test and get the tint more accurate but because it just happens that they are both wearing blue although Rachel’s is a different tint. A lot of people think that is a bit funny they have both got blue and just think they are sunglasses.  “What are you wearing your sunglasses for, here?” And things like that but that have made a difference in concentration and the school feels that as well, that his reading and concentration is better.
 

Kirsten’s day starts at 4am when her son wakes up.

Kirsten’s day starts at 4am when her son wakes up.

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Since he was born he got up at 4 o’clock in the morning. Occasionally he will lie in to the back of five, but 4 o’clock has been his time for waking up. So last summer, I took him to [centre] and we have been working on sleep, so gradually getting a wee bit more sleep but then come the lighter nights and lighter mornings, it has kind of knocked it off again. And because he has such sensitive hearing, he can hear the birds, he can hear sirens, he can hear somebody cutting their grass in the evening two or three streets down, you know he hears a lawn mower that we haven’t noticed so he struggles to get to sleep. But we are working on that. Bless him!!
 
He is on fish oil, you know to help him, to calm him down a bit, help him sleep, but he still can wake, yesterday we were up from 3 until the back of five and then he dozed him but the girls were then getting up the back of six. So I think we have probably only had about half a dozen full nights of sleep since Andrew was born in seven years, and people say, “How do you do it?” But you just get used to it but when he was small that really, really got to me and when I was getting up to feed Hannah as a baby and things that really got to me, the sleep thing. And another mum who actually works in the chemist shop here, whose son has autism, he is a teenager, she said, “Well you will just get used to it. I have been up doing it for how many years, from three o’clock each morning. You just get on with it.” And so you do.
 
It is probably harder in the winter when it is freezing cold to have to get up at 3 or 4 in the dark and see what is wrong, see if you can put some music on and get him back to sleep. He likes listening to instrumental, like Bach and classical stuff like that to help him get back to sleep but sometimes it just doesn’t work. Sometimes we arrive at school and they say, “Oh Andrew, you are looking lively. When were you up today?” And you say, “Oh 4 o’clock actually.” But I think that is why he struggled with afternoons at school, because he was just tired and grumpy. He is definitely a morning person.
 

Kirsten encountered some difficulties initially when she put her family on gluten and dairy free...

Kirsten encountered some difficulties initially when she put her family on gluten and dairy free...

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Okay. Andrew is now gluten free, casein free, sugar free and yeast free. But at first it was the gluten and casein which we cut out which looking back Andrew had always craved food and he was always eating loads and loads of crackers all at once or loads of rolls and he would steal food out of the cupboards, even as a tiny tot, he was in the cupboards raiding it for food. So it was hard at first to change, but then on the other hand, I’d had allergies for years. I’d had allergies myself so I was still looking at ingredients and making things at things at home anyway. When we cut out the dairy free. Andrew’s wee sister (who was covered in eczema when she was born), her skin cleared up, so she would never go back on dairy. So we made a decision that we would all go on the diet. My husband was very resistant to that. He thought that was unfair. He wanted to eat all his food but having allergies myself I know what it is like if you are at someone else’s house or you are out somewhere and they are eating something and you want it and you can’t have it, it is like torture seeing something on somebody else’s plate that you can’t have so I was determined I wouldn’t do that to him. Plus the practicality of trying to keep it away from him because he leans over and takes food off our plates still so we just cut it all out.
 
Was that really difficult?
 
No. Time consuming because I have to bake everything but Andrew now bakes his own bread and rolls and cakes. He loves baking. The girls bake as well. They know the recipes. It was difficult to find ingredients up here though, that was hard because it is just a wee tiny health shop in [town]. It is not easy to get things. So actually I order a lot from down south and get deliveries.
 
Have you had help from the doctor with that?
 
We did get a gluten free prescription but it was very limited what you could have. Some of the gluten free breads contain milk which Andrew can’t have. They contain yeast, they contain sugar, they contain lots of other additives and they are like cardboard [laughs]. So we used a prescription at first for maybe about a year and we haven’t, simply because we didn’t really like most of the things that were available on it. And there was also the hassle of then having to go and collect it from the chemist. We couldn’t get it from the chemist in the town here because it is a wee place, it had to be a chemist in [town]. So that just wasn’t worth the hassle.
 
And do you think it has had an effect on his behaviour?
 
Yes. Within I would say two or three weeks of being on the diet, Andrew ran into a table and felt pain for the first time. He was howling, absolutely howling because he had banged his face and crying and so distraught and we were all cheering because he actually felt that something was sore because before he had no sense of pain. So he had no sense of danger, he was into fires, he was into gas cookers, so the fact that he felt pain was good, you know for his own safety [laughs].
 
And he has always had digestive problems, right from a tiny tot. So that began to ease. He still has digestive problems, it is still not fully sorted, but it is definitely less pain. When he was in nappies he was so distraught sometimes, and like doubled up and definitely in pain. So the diet has definitely made a difference. He once accidentally got, something with milk in it, canned fish, and I had bought a different brand and I didn’t realise. The supermarkets don’t all, they declare the ingredients in the tin, but not how they prepared it, so this company actually cooked their fish in milk, so he had had sardines and
 

Kirsten found the Son-Rise programme didn’t work for her son and also was too difficult to manage...

Kirsten found the Son-Rise programme didn’t work for her son and also was too difficult to manage...

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Since then we have looked into Son-Rise. We did a wee bit of Son-Rise for a few months. I have got a friend who has really stuck with Son-Rise for years and really believes in it. For us it was great, so optimistic, so positive but we didn’t really get the progress with Andrew. He stimmed more. We joined him and he stimmed, he just thought that was great fun and he stimmed more. So it didn’t really. In fact more of Andrew’s difficult behaviour from the past came back and it didn’t really work with the set up because this playroom is for all of them. Although it has got a lot of specialised equipment for Andrew it is for all of them and the girls are allowed to use it too and they are very much encouraged to play with him and go on the things, you know, go on the wee bound and the sling and all that to. So I think for Son-Rise we really would have needed a separate room and not have the distractions of too much else going on in here. I think that is the difficult part of it. My friend who has done Son-Rise they created a room, a basement room that is just for that, so there is no interruptions, no distractions. So we did six months of that and then I felt no it wasn’t and I went back more to this kind of thing. It may be partly depends on your personality type and your personality is real and it is sort of the family dynamics actually with what works.
 

Kirsten describes her experiences of ABA and DIR.

Kirsten describes her experiences of ABA and DIR.

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It is actually called the DIR model, Developmental Individual Relationship, better check what it’s called.

 

Because I should know Let me just summarise it; it is kind of a cross between the ABA and the Son-rise. It is going with your child’s interests when they are playing, going along with what they like to play at, what they are keen on and what is their motivated, I think they even call it the child’s sort of passion and enthusiasm, going with that but trying to use that to get interaction with yourself, to use exchanges back and forward, these things up here that is the kind of steps of the DIR thing.

 
So first of all you are looking for the child to share attention with you, then you are looking for engagement, two way communication, whether it is verbal communication or just looks, gestures, something back and forward. It is so that even, even if you are playing a game with a ball that – you are trying to get interaction rather than you just throwing the ball and the child walking off. You want the ball to come back and you can throw it back and you can throw it back so you are getting smiles, laughs, looks, back and forward exchanges. And then obviously once you get onto the problem solving that is if they can’t reach something or can’t do something, well how could you do it and could you ask for help and could you use such and such, that is sort of thinking and logical stuff. The creative use of ideas is kind of where we are getting stuck because that is the imaginative… and Andrew is not too keen on imagination.
 
But I got the DVDs from the States, Stanley Greenspan sort of working the…commenting on parents working with their child that has been fascinating to just picture what you are reading because you can read it and get an idea from it. but then to actually watch these kids and how their parents are doing it and Greenspan coming in and saying “Oh you could try such and such and how about asking them”… and just how the parents are getting a lot more interaction.
 
Fascinating how you can get so much more out, I suppose out of your child, less of the switch off, tune out thing and my own world and a lot more back and forward just by having, using the right questions not just asking something where the answer is yes or no, because that is all you will get. Where a typical child would go on to expand on what they are saying, if I asked Andrew, “Do you want to put this in the box?” He would say, “Yes,” or “No” and that would be it. We had to try and phrase it so it is “What do you want to do with this?” “Where do you want to put it?” “Why do you want to put it there?” “What will you do with it next?” Just to get more language. That is why we have got these questions up here to help us.
 
So I think that to me the floor time Greenspan approach is more positive and I have certainly seen a lot more progress in Andrew with that then I was with the Son-rise. But maybe it suits me more, because it is more structured. I can see more of a method in it, so what Greenspan would recommend is you try and build up to 20, and 30 minutes of this interaction. Constant back and forward exchanges and then have a break and do some sensory play and then they do semi structured activities, which is more the educational things, either with some language cards or a language board game or some maths. So you try and get 46 spells of sensory play in, four to six spells of semi structured play in and then the rest on this floor time because it is more kind of on the floor down on your knees playing with the kid at what they want to play at. So we are definitely getting places. He will pretend for a few minutes to be a lion or a tiger rather
 

Kirsten talks about how she manages Direct Payments.

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Kirsten talks about how she manages Direct Payments.

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But through the social work department we get a direct payment from June for 14 hours care a month. At first we had a home help but that wasn’t working because she could only come at a scheduled time and she was trying to dust and hoover as we were trying to get ready to go into school in the morning so that didn’t work. So they got us a direct payment so I am responsible for employing carers. They have to get a disclosure, you know I have to go through disclosure tests but I am responsible for employing them and the payment, paying their wage and their tax and National Insurance. So one night a month I have to sit down with Inland Revenue forms and fill it all and keep all that up to date and every three months the financial forms all go back to [area] to check that it has been used for the right thing. But it gives us the flexibility of, if we have got an appointment paying a carer to come with me to the appointment but somebody to stay at home with the girls because to drag everybody to hospital appointments and sit in the waiting room, that is just a nightmare and it is not fair on them the amount of appointments they would have to go to.
 
It means having somebody like yourself here or a professional out to the house to see Andrew. Then again I can change the carers hours to say well can you come extra or can you come early that day. It gives me the flexibility to pick who are the best people. We found out that young people are the best, like teenagers, students, because they have the most energy. They don’t have preconceived ideas of what a child’s behaviour should be. Some of the wacky things he does are just cool to them. That is okay. Whereas an older person, would be oh no, no, I don’t think you should be doing that, and no, no that would be dangerous to stand up in that stool Andrew. Where it is not dangerous because he won’t fall off. He is not allowed to go to somebody’s house or climb up on the furniture but he knows that is his and that is his climbing stool.
 
We got that because he used to climb on the worktop and worktops are not allowed. So young people are okay. They are flexible about that kind of thing. And they have got the energy levels and they will run about or jump or they will go on the trampoline or play with the balls and get him interested in it. They will have a go on a scooter, if he is on one scooter they will grab another scooter and go on it. So that definitely works the best. And if he has got a notion again to be on the computer then again young people are more comfortable. So that has definitely worked better.
The one difficulty with the direct payment is it is a small amount of hours so it is not enough to be somebody’s main job. So somebody whose is looking for, I suppose a working wage and is looking for a full time job it is not any good. It is either maybe retired people or students that are available at the times we are looking for. And certainly to students that is great because they are available during the holidays and they get plenty of holidays so that works out and he loves young blondes. So … [laughs] so he is very, very cuddly towards one of the girls, actually has been with us for three years and she is very much part of the family. That is brilliant. That has just made such a big difference that that is someone I can now leave him with.
 
Technically with the direct payment there is hours built into it that I can off to the pictures or go to the hairdressers. Realistically I don’t. When somebody else is here, if they are willing to play with Andrew then I will go and get some housework done, or I will play with Andrew and they will go and go and tidy up and put the washing away. Maybe it is partly my personality but I don’t see me swanning off and saying oh well you are here I will go and do such and such
 

Kirsten talks about the various factors that could have contributed to her son’s autism.

Kirsten talks about the various factors that could have contributed to her son’s autism.

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Oh [laughs]. That’s quite a question. Definitely biomedical things. There are definite links there to the sensory things, to allergies. Again these couple of mums that I am particularly friendly with, we have brainstormed and discussed, we would like to do a wee survey locally amongst mums to see what we can find out. There is definitely genetics and it is definite because you can look back to other members of the family and see traits. And people who maybe 30, 40 years ago should have got a diagnosis, now they would. So there is that line definitely, biomedical. Andrews has never had any jabs but that is because my sister and had horrific allergic reactions to jabs when we were younger, particularly the rubella jab we were very ill after that.
 
So I made a decision and the doctors backed me up and now that they are back in the town, this is where my sister and I grew up anyway, the doctors are absolutely okay with that because they saw the reaction that we had but one of my friends is absolutely convinced that her wee boy was okay till he had it. And whether it has then triggered all the biomedical things, but Andrew definitely had the biomedical things from birth. He definitely had a digestive problems, sleep problems, although at one point looking back on old video tapes at one point he did have a few words. About a year he did have a few words, but by the time he was two and he was diagnosed he had none. So I can see why people say there is regression.
 
And as a baby the reason they didn’t… they weren’t terribly concerned - the health visitor and the GP - when he was a baby was, he was advanced. He walked quicker, he sat up quicker, he moved quicker, he could do things, he could do jigsaws, he could do shape sorters, like in two seconds, so he appeared advanced. So I can see where the regression thing comes in. Why people definitely feel that because their child seemed clever, bright, alert, advanced and then whoosh, come eighteen months two everything goes backwards and I think with some children it is, the jabs are just thing that just trips them over the edge.
 
Whether it sets up an allergy thing. I used to be a member of Allergy Induced Autism. They now don’t exist any more but there is definitely an allergy link and there is a big family history on my side of side of the family of allergies, asthma, migraines, skin allergies, reactions to foods. So that is definitely, definitely part of it. It is almost as if with Andrew all these things sort of fit and then sometimes I wonder why was it him and not the girls? And somebody said maybe it is something going back to his birth and who knows. Who knows because he was blue when he was born and he had to get oxygen straight away and the girls didn’t. Was it stress related? There was a lot of family stress at the time and I was on crutches with Andrew as well, but then I was on crutches with Hannah and she is okay. It is really very hard to pinpoint what is the exact but I can see why some of the charities have a jigsaw as logo because it is almost like all these pieces. I don’t think there is any one thing.
 
We did some hair tests with Andrew three years ago now and where some children with autism it is high levels of mercury or aluminium, he had high levels of tin, which that took a bit of working out but when Andrew was born we were in brand new house and the copper pipes had tin solder and a lot of it. The plumbing work wasn’t terribly well done, that is how we can remember because we remember my Dad inspecting the work and thinking they have made a right mess of this. And they had used a lot of tin solder on the copper pipes. So maybe because then as a baby he was exposed to that. Rachel was already old enough and then we moved from that house before Hannah was born. Maybe
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