Sandy - Interview 1
Age at interview: 38
Brief Outline: Sandy's older son, Joseph, aged 8, was diagnosed with autism one month before his second birthday. Her younger son, Adam, aged 6, was diagnosed with autism aged eighteen months. Both boys attend a special school which they enjoy.
Background: Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.
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Sandy lives with her two sons, Joseph aged 8 and Adam aged 6. She has recently separated from her husband. Sandy describes Joseph as the perfect baby who was never any bother at all. She vaguely suspected something may have been wrong because he walked late and was not talking by the age of 18 months. The health visitor became concerned about the lack of speech and referred him to a paediatrician who diagnosed autism at 23 months. Sandy had suspected autism and felt that at least they knew what they were dealing with.
Adam was very different; he was very sociable and wanted constant attention. At 18 months Sandy noticed him twisting a pencil in a similar way to Joseph at that age and became concerned that he could also be autistic. She contacted the paediatrician directly and found out within a couple of weeks that he was autistic too. Sandy found this very difficult to deal with because she had been so sure that Adam was a ‘normal little boy’. She felt very low for six months after the diagnosis.
Generally Sandy is very positive about her sons and says that while there are challenges, there are also considerable rewards. She and her husband attended two short residential courses which helped them to understand how their children experience the world and they have set up a playroom in their house for the boys to have one to one therapy with volunteers. It has been difficult to use this room very effectively, however, because there are two children. She has learnt various techniques to help manage some of the boys’ behaviours including brushing, communication techniques and holding.
Both sons attend a local special school and Sandy has a good support network with a local group for parents with disabled children, family and friends. She has made her house ‘autism proof’ by removing pictures and ornaments and keeps a fridge in her room which has a lock. She worries about the future for the boys and would like some advice on how to deal with issues of puberty.
Sandy thought her son had been practising in secret when he walked without crawling.
Sandy thought her son had been practising in secret when he walked without crawling.
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Did you compare his development with other children at that time before the diagnosis?
I think I did. I think I did. Yes. If I think about how he was then, he was always a bit unruly at his mums and tots group and he always used to find it really difficult to sit down in a group and do the singing, although he used to like the instruments and banging around he was never really content to sit down and do singing with everybody else. He just wanted to potter about and do his own thing.
He didn’t walk, this is Joseph the older one, he didn’t walk until he was fifteen months old, which I was a bit sort of concerned at, but then people say to you boys can be lazier than girls and he is a first child, he has got nobody to copy, but then the first time he did walk, he just sort of took off and shot across room and I just thought wow again [laughs]. So I don’t know if he had been practising in secret something just as if to just suddenly go, and say, “Hey look at me, I am off.” So yes, but the speech was the big thing as well because there was absolutely no little ‘mum’ ‘mum’ ‘mum’ sounds or anything like that. He used to do a kind of babble but it wasn’t even really like a baby babble it was just totally just little noises and things rather than speech sounds. But he would sit there going sort of ‘ooh’ ‘ooh’ ‘ooh’ ‘ooh’ and little things like that but not really ‘ba’ ‘ba’ ‘ba’ or ‘dee’ ‘dee’ ‘dee’ and things like that which sort of a lot of children do.
Sandy's two sons have very different personalities and she found getting the second diagnosis particularly upsetting.
Sandy's two sons have very different personalities and she found getting the second diagnosis particularly upsetting.
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And then Adam came along six months later and at Adam’s eight week check-up our health visitor sort of concentrated more on Joseph and lack of speech and by then he was two years old and not really sort of making any kind of noises at all. And she referred us to a paediatrician eventually who did diagnose autism, just before, …I think it was, no, it must have been about eighteen months he started the speech therapy and then saw a paediatrician at about just a month before his second birthday, he diagnosed autism. It was a big blow but at the same time we started looking into it and it did explain a number of the things that Joseph was doing, such as the constant video watching of Thomas the Tank Engine which I think really every sort of autistic parent experiences. Lining cars up, lining everything up, sorting out into colours and things like that. Never really took any notice of his baby brother at all, because Adam arrived at about the same time as Joseph was diagnosed.
Adam was totally, totally different, very different to Joseph. He was very into company, very smiley, a typical baby really. He didn’t sleep through the night, he wanted constant feeding and changing and generally being quite a pickle, totally the opposite to Joseph. And then one day when Adam was eighteen months old he picked up a pen and started doing this. And Joseph hadn’t done that for a good year and I did say to my husband, “I am absolutely convinced that Adam is autistic as well,” which was a big shock because that was the first autistic thing that he had done independently. He had jumped up and down and flapped when he got excited. But that was actually the first sort of really, I suppose, autistic trait that we got from Adam independently. I contacted our paediatrician who was absolutely fantastic and said, “Bring him in”. And unfortunately Adam was diagnosed as well not long after the eighteen month sort of thing. We were seen very quickly and that was a very big blow for us personally as a family because I think really we just thought we had a normal little boy and then all of a sudden he is autistic as well.
And the first thing that hits you is, is there something wrong with me? Can I have a normal child? The boys are still very, very different. It took me a good eighteen months I think. I almost went through a grieving because the little boy that I should have had felt as though he had been taken away and that was very hard to deal with actually. I did go through quite a down stage and I suppose even then we were just looking into autism. How it would affect the boys, trying to understand what was going through their heads. And sometimes you think you understand something and then they do something that you are totally not expecting which is, which is normal now I suppose [laughs].
Sandy went straight to the paediatrician when she suspected her second son may be on the autism spectrum.
Sandy went straight to the paediatrician when she suspected her second son may be on the autism spectrum.
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I suppose when he was at his mums and tots group as well, he didn’t particularly used to join in with things as such but he was always happy to be in the middle of a group, whereas Joseph used to go and sort find things to do on his own and then like I say, they used to sort of, if there was something on the telly, Joseph used to stand in front of the telly and he would always jump and flap up and down and Joseph’s flap has always been a hands out like this, whereas Adam's has always been a totally different thing, but of course we always thought that Adam was just copying Joseph and it always seemed to be if Joseph did it then Adam did it as well, but now we know that Adam was doing it in his own right, but of course we just thought that he was copying.
And then I suppose when it got to about, it must have been about eighteen months old and I noticed that Adam’s little friend Eddie the Shredder had started talking and things and I thought Adam’s not... But he was still sort of babbling away and sort of making funny little noises. And then I think really the crux of it for me was when he suddenly picked the pen up and you know there was a pen on the table in the living room and he picked it up and he did this and watched it go past his eye. Now Joseph used to do that a lot, but he hadn’t done it since Adam was about six months old.
And I said to my husband, I said, “I am sure Adam is like autistic as well”. And he said, “No he is not. He is just copying Joseph.” I said, “He is, he is. He has just done this thing that Joseph hasn’t done for ages”. And he was absolutely convinced that Adam must have remembered some distant memory. But I said, “No, he has got to be”. And I actually phoned my paediatrician directly. I didn’t sort of go through the doctor, the GP or the health visitor because I thought well, if he is, I would rather get a diagnosis quite quickly and he was brilliant. He arranged really quickly for us, within a couple of weeks actually to go and see him and sort of almost instantly he said, “Yes, he is on the autistic spectrum as well” which was an absolutely massive blow, because I think with Joseph we had always suspected that there was something different about him, but with Adam it was just, “Oh god, why us, why have we got two like it?” and I think for me the first six months after the diagnosis were really, really hard because you are coming to the terms with the fact as well, that I have only ever had two children and they are both autistic.
One of Sandy's son's will sleep through while the other one will wake up several times during the night.
One of Sandy's son's will sleep through while the other one will wake up several times during the night.
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Joseph when he goes off to sleep, and sometimes it might not be until ten or eleven at night bearing mind he is eight years old, he will sleep absolutely solidly through. It is very rarely that Joseph will wake up in the night. But the trouble is when he wakes up he won’t go back off to sleep. I mean if he wakes up, he normally wakes up, sort of five or six but on the rare occasions where he does wake up in the night then he can be awake from two and stay like that.
Whereas Adam will actually go to bed quite nicely but he can be up three, four, five times in the night and he has just recently come out of ‘pull ups’ and we did find that if he woke to go to the loo in the night, he would be great, and the bed would be dry, but because he had absolutely convinced himself that he had wet the bed, I would have to change the sheets and that was happening three or four times a night. And Adam is a much lighter sleeper but I must say last night he did one of his annual blitzes and he slept through from half past five yesterday afternoon until 6 o’clock this morning. I just couldn’t believe it. It was great. It only happens once a year.
Sandy's sons love Butlins which works well because it is contained.
Sandy's sons love Butlins which works well because it is contained.
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We have found that with holidays the best place for us to go is to Butlins. And that is because there is loads and loads for the boys to do and basically, I mean, we can go on the beach. We can go swimming in the pool, we go you know have a go on the wave machines. There’s go carts, as long as there is something there for them to do then they are fine. And also the apartments that you get, they haven’t got ornaments, they haven’t got wallpaper they are basically quite family proof and that is another issue that we’ve had. I mean we tried to stay in a… tried doing a caravan holiday and I think because the boys are quite noisy as well, we did actually wake quite a lot of people up. So yes, finding the perfect … it was very noisy actually but I think they thought we were throttling the boys 24…
Did anyone say anything to you or not?
No, but we did get a few looks. We didn’t actually get anything said, but we did get a few looks and I thought probably when Joseph started his ‘yaaaa’ sort of noise then they probably think we are killing them or something, but Joseph does that when he is really happy and excited so of course he was doing it all week because we were away, but you know I remember nipping up to get and paper and coming back and thinking oh my God I can hear him, sounds like he is being killed. But they absolutely loved it. They love going away. Joseph does have a problem with coming back. He can’t deal with the going home thing. It did take two of us and a security guard to get him into the car last time we left.
Because he wants to stay there?
Yes. Yes. He absolutely loves it. He loves doing things. Costs us a fortune in the launderette as well because he will just sit 24/7 watching all the washing machines because when you have got sort of five or six in a row it is really great you know, sits there flapping away, “There goes more, mummy.” So, as I say, yes we hardly have to take any sort of clothes away with us. Because literally we just wash everything the minute we have worn it. And it is great, he loves it. Yes, but it is basically, it’s your surroundings and knowing that if they, you know they are not going to sort of get an open door and be able to run for miles and things like that. At least at Butlins everything is sort of safely contained and things and I know that if they did escape then they would be found sort of relatively quickly, normally at the sweetie shop bit. But yes, it is location and the actual sort of building or room or whatever you are staying in can be a bit issue.
Sandy remembers the first time she went to Sainsbury's without apologising for her sons' behaviour.
Sandy remembers the first time she went to Sainsbury's without apologising for her sons' behaviour.
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And I get an extra couple of hours every full week of the sort of school holidays. So I get an extra two hours then. So it is quite nice because it means we can take the boys out somewhere. We do swimming and then Burger King and things like that and [person] not in the least fazed by anything that they do. She understands totally the way they are and sort of how to deal with them. She’s not bothered at other people looking when we go out and things so.
Does it bother you that people look?
Not any more. No it used to.
In what way did it bother you?
I suppose I used to be quite embarrassed that people were looking at me and I used to think when Joseph was having a paddy in a shop or something I used to think, oh God, people are going to think he is horrible and he is not and I used to be saying all the time, “Oh I am sorry, my little boy is autistic, and he can’t help it” and feel like I needed to explain to people what was going on. And that actually carried on for a couple of years and then one day I realised I had actually got round Sainsbury’s and I hadn’t done it. I hadn’t apologised for my boys being autistic and I actually said to my husband when we came out, “Do you realise we have just gone all the way round. We have done a big shop with both the boys and we haven’t apologised to anybody once for the way they are”. And actually it was quite a nice feeling and now I feel that if the boys walk past somebody and wallop them, I do say, “Sorry, they are autistic, it is part of their condition”.
But I quite enjoy talking about the boys and why they are the way they are now. I am not fazed. I am proud of them. I’m very proud of them. But it did take quite a while for this feeling of having to apologise. And I thought why should I? They are just my boys. So I don’t know. I suddenly smelt the coffee or something. I don’t know.
Sandy describes how the rewards of bringing up her sons are "fantastic".
Sandy describes how the rewards of bringing up her sons are "fantastic".
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There was actually an autistic unit half a mile up the road from where we lived before we moved and I knew – a young lad he was only eighteen and he worked there and he used to say, “It is fantastic. You know when they learn to do something new. It can be something, such a little step for your sort of typical child and then for an autistic child to suddenly get the grasp of how to do something, it is absolutely huge”. And now after thinking back I keep thinking he was right. He was right. Just a little tiny thing for my boys is such a big step for them. And that is what I tend to sort of think of now. Rather than what they can’t do I think of the little things that they achieve and it is absolutely brilliant.
You know they can be so rewarding as well. So it's … yes, it is definitely, you have to see it as a bit of a challenge I think. But at the same time the rewards are fantastic. It is like the first time Joseph said, “I love you, mummy”, independently, it was just great. And I can remember the first time he answered me back as well. I mean he would repeat things that I was saying to him but he never used to sort of really answer any questions or anything and he was upstairs and he was being a bit of a pickle and I said to him, “Right,” I said, “You get down these stairs now”, and he just looked at me and he went, “No”. And I just thought, he has answered me back. I thought this is great he has just answered me back and I was just so excited, I just went off into the question and did a bit of a dance, because I thought, “Wow he has answered me back. It is great, you know. He has done something normal, some normal behaviour totally independently.” I mean most people would be horrified the first time a child answers back but to me it was fantastic. So it was, yes it was great.
Sandy banks up her allocated hours so if she is having a 'really, really bad time' she can ring up and get support
Sandy banks up her allocated hours so if she is having a 'really, really bad time' she can ring up and get support
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And you mentioned having respite care. Have you had respite all the way along?
We used to get an hour a week, sort of four hours a month probably from quite early on. I think it was after Adam was diagnosed as well though, so we were just getting four hours a month which we have had increased to two now.
Two hours…?
Two hours a month… a week, yes, sorry two hours a week. Yes. So what I have been sort of tending to do is use those when my husband has been away working or if I may be go out for a evening or something then he has somebody to help him. But I think our main problem is we weren’t actually using those hours to go out together. So… I would strongly recommend if you get any respite care go out with your other half and don’t let that slip, because that was our problem.
Do you have direct payments or..?
We did look at direct payments and found it all a bit confusing with how you work out all the sort of monetary side of it. I’ve got people that would come and babysit for me but we actually use somebody from Social Services and it is somebody the boys … she actually works at the school where the boys go to as well and so she has known them for sort of five years, so I know she can cope. We could use two people at the same time as well which is still …
Is that within the two hours?
Yes, yes, because we have got the two boys, but generally [person] who comes like, should I have said her name. Is that all right? [person] who comes out to us she is absolutely brilliant and she can deal with both boys at the same time. And at first I was thinking God it is like having a sergeant major in your house but she has actually taught me a lot as well, and taught me that I do have to be very firm with routines and she is fantastic. She can get Adam to brush his teeth no bother, whereas I have got him in a headlock and really struggling with him, sort of half sitting on him, headlock and brushing his teeth and she says to Adam, “Open your mouth”. And he is brushing them for her. So I would love it if she could move in with us. But …
Is two hours a week enough? Or would you like more?
I suppose it is. Because I would like more, I suppose obviously everybody would like more wouldn’t they, but I tend to bank it up and the nice thing about [person] as well is if I know that I am on my own with them and if I’m having a really, really bad time with them I can actually ring her up and she’s pretty good at just coming out and sort of coming to me at the last minute as well and I just try and sort work my hours and try and bank some up so I’ve always got a few in hand.
Sandy describes the very different approaches she has to take with her two sons.
Sandy describes the very different approaches she has to take with her two sons.
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And also on the course, it was strange but we found toilet training a bit issue as well and we were taught that you know if it’s like for Joseph it took ages to get him out of, well I suppose he was out of nappies by about three and a half, but we were taught you know really make a fuss of them, if they do something good, really make a fuss of them, so with Joseph, the first time he went and had a wee, we were literally “you have done it, you are brilliant. What a good boy!” And he sort of was grinning you know as if to say, “Yes” and he kept “Yeah” and making all these noises as if to say I have had a wee and that is great and we were so excited and because we had this sort of reaction to him, it would be like, hey I am going to go and do it again and it was great.
And it was just everything that he did like that, if he did something really good then we used to have to leap around the room and be really happy and really totally over the top. I mean I even did it in the supermarket once, and somebody really looked at me like God she is raving mad and I thought may be I am, but my son has just done something really good. And he used to actually beam at her, beam at us, because he used to think it was great, “Look what I have done to mummy, she has gone mad” and then we tried it with Adam and it had totally the opposite effect. Adam went and had a wee in the toilet and, “Oh Adam, you are so clever, you are such a good boy”, and he just instantly hands went over his ears and he shot off to the bedroom and was really upset.
So we learnt to sort of change it to, “Adam that is really good. What a good boy”. You are really, really clever and because we had totally different reactions to both the boys which of course we weren’t expecting, but they are very, very different in character and everything. They don’t even look like each other. And that was our way forward with Adam and we just found that just quiet encouragement and telling him he had been really good, whereas Joseph you got, “Yeah” and Adam you got, “It is really good, Adam, well done” and a it of a thumbs up and things and for him that was the way forward with Adam and we have just found that you need to adapt your style to the child.
I mean Joseph has always been very reactive to sort of big cheers and “Yeah” and things like that whereas Adam has been, “Really good boy” and then he will do a little smile and sort of look at you and he might come over and touch you on the knee or something like that, which is quite an Adam thing to do and it is like “Okay mum, calm down”, you know. They do look at me like I am mad sometimes, so yes that was another thing that we learnt on the course, was, being enthusiastic, but I think with Adam we just learnt there is different kinds enthusiasm and you need to find the one that suits your child really. It was quite strange.
Sandy thinks it is important to focus on the positive things rather than look for things to blame.
Sandy thinks it is important to focus on the positive things rather than look for things to blame.
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I think the thing is rather than look for things to blame as well, don’t dwell on it. You have got to move on and look at the positive things, like the little steps they do, that are just routine to a normal child, but something so important to the sort of autistic child. I mean it’s like I say with Joseph answering back, I was just so excited because he’d answered me back and it was just amazing. It was just. Wow he has done it, he has done something normal and the other day they actually started really fighting and well it was just being normal, they are just fighting, look at them they are really scrapping you know. And Adam the little one did come off the better because he is faster, but I think you have just got to sort of be positive. Try and look on the bright side. They’re fit. They’re healthy. They are little monkeys. But I wouldn’t swap them. I just wouldn’t. Not for anything.
Sandy describes puberty as 'a fuzzy old area' and how she does not know how her son will cope with it.
Sandy describes puberty as 'a fuzzy old area' and how she does not know how her son will cope with it.
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Yeah. I do. Yeah I do very much. And I think I wonder how about how it is going to affect him. Will I be able to cope with him when he gets much bigger, because he’s very strong now. And it is if he is really having a big hissy fit it’s all I can do now to try and control him, or to get him to calm down. I don’t suppose control him is the right phrase, but to get him to calm down and get him to listen to me. I do worry about I suppose all aspects of the future. Like where will he go to school? Where will he live? Will he end up in residential care? It is already on my … I know it might happen, it might not. It might happen with both of them. Yes the puberty thing. I don’t know how he is going to change when he goes through it I suppose.
I suppose it will be like everything else. Take it as it happens. And just see what happens, but I know he is very attached to a young girl at school and I do think… I hope he doesn’t when he goes through the puberty thing, or going through it, attach himself to the wrong person and maybe behave inappropriately as well. Obviously that is a cause for concern but then I don’t know I suppose at the moment what is going to happen. So, I don’t know. It is such a fuzzy old area isn’t it? We just don’t know how he is going, how he’s going to be.