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Nicki and Mark - Interview 14

Age at interview: 32
Brief Outline: Nicki and Mark's son, Tyler, was diagnosed with autism when he was four years old. He attends a special school and they are delighted with his progress.
Background: Nicki, a local authority employee, and Mark, a full time carer, have two children; Tyler aged six and Emma aged five. Ethnic background/nationality: White British

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Nicki and Mark have two children; Tyler aged 6 and Emma aged 5.  Tyler was born after a difficult birth and was slow to develop speech.  His parents had some concerns about his development and asked the health visitor about it but their concerns were not taken seriously until he started playschool.  The staff there suggested he might be exhibiting autistic traits and when he was four, autism was diagnosed.

Nicki and Mark take a hands-on approach with Tyler’s schooling; they were very vocal about the support they thought he needed and the type of school he should attend.  He is now settled in a special school and they are delighted with his development.

Nicki had difficulty accepting the diagnosis for approximately eighteen months and dealt with this by reading about autism, by actively seeking support for Tyler and by talking about his diagnosis with others.  She jointly co-ordinates a local parent support group and suggests that while it may seem bleak at first, things do get better and she is very optimistic about Tyler’s future.
 
Tyler and his sister are very close and have an excellent relationship.  The main issue for Nicki and Mark is dealing with other people when they go out to various places.  They are happy with their experiences with health and education professionals, but the reactions of other people make it difficult to take Tyler to places such as the cinema or shopping. 

Nicki's Poem

“We think it’s a boy”
they said at the scan
and from that day to this
you were my little man.

Then 2 days before
The date you were due
After three days of labour
You were born – I loved you.

You were perfect to me
With a headful of hair
And those twinkly eyes
That gazed into my stare.

Each milestone came
You hit every one.
Walked before a year
My amazing son.

But speech wasn’t good
Something’s askew
Too young to tell
Was Doctors view.

At 3 you started pre-school
A ‘different’ boy is seemed
Time to undergo some tests
To find out what it means

Suddenly support came
From every way it could
Special Groups on Fridays
The progress made was good.

More tests for diagnosis,
My son a ‘subject’ now.
I knew what name was coming
But I ignored it anyhow.

But there it was just weeks ago
In black ink print on white
My baby is autistic
I knew I had been right.

But I wasn’t ready to hear it
And crumbled like a cake
It’s a mis-diagnosis
They’ve made a big mistake.

Was it me?  Or MMR?
Or a difficult birth to blame
Wherever the fault lays for this,
the outcome’s still the same.

So now I am accepting
That his behaviour has a name.
He’s still my little baby
No-one is to blame.

There’s a reason why he screams out loud
Or pushes me aside
But every day each thing he learns
Fills my heart with Pride.

He still looks into my eyes sometimes
and I fall into his gaze
I remember how, when he was born,
he set my heart ablaze.

The fire burns as strongly now
as it did when he was new.
But now I know the love I have
no ‘illness’ can undo.
 

 

Nicki struggled with feelings of guilt and anxiety about Tyler’s future for 18 months after...

Nicki struggled with feelings of guilt and anxiety about Tyler’s future for 18 months after...

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Mark' And with me it was more like take it on the chin. Deal with it.
 
Nicki' Yes. I struggled. I really struggled. I felt guilt. Should I have insisted on a Caesarean? Should I have let the labour go on for three days? I thought did I wash strawberries when I was pregnant? I ate brie, heavens was that it? Mark considered for a while that it might be the jab. And we were both really looking for something or someone to blame. As a mother, my own private thoughts were awful for a while. I thought, you know, how could I possibly exchange Tyler for a normal child? Is there a way I can do that? Extremes. Real extremes. And then feeling guilty because I had thought it and then being really desperate within myself thinking how can I have ever protect him? How can I make sure he grows into adulthood? Is he going to have an independent life? I don’t want a disabled child. I want a normal child. And all those emotions were an absolute roller coaster for me. And probably if I am honest lasted about eighteen months and when he was diagnosed I burst into tears and … but I knew that that was what the diagnosis was going to be. I knew it. We knew it.
 
Mark' I was kind of relieved when he was diagnosed I was kind of relieved because I knew he was going to get the help that he needed you know. Because it had been identified and I suppose the way things are and everything else I was relieved I suppose. And …
 
Nicki' The other option was a lot worse because they could have said it was unspecified learning difficulties. Where do you go with that? You know with autism, yes it is whole spectrum and yes, every child is different and there can be all sorts of traits of it that they display and you know it is complicated and it is difficult. But we knew what it was. And that is the better alternative we felt, then having something that was, we don’t quite know why Tyler is the way he is. You know we can’t put our fingers on it. So for us that was the trigger then to be able to get all sorts of help so we applied for Disability Living Allowance. We applied for all sorts of different types of help didn’t we?
 
Mark' Yes.
 

Nicki received good advice from another parent soon after her son’s diagnosis.

Nicki received good advice from another parent soon after her son’s diagnosis.

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Nicki' Yes. Just after Tyler was diagnosed, I went to a friend’s daughter’s birthday party. Tyler goes into meltdown with birthday cakes then the candles are blown out.
Mark' Hm.
Nicki' One of his things. And I said to her before we went I don’t want people looking at him like he is a freak and this happens, so can you warn people. She went don’t worry, she said, “My husband’s cousin, is autistic, and he is 16 now and everybody understands. That is fine.” I went into this party and start chatting to this young man without even realising it was this person. He was very clear on which subjects he would discuss with you and have a conversation with you and which ones he wouldn’t and if you diverted from his chosen list of subjects, he would steer you straight back on. But other that than he was a very competent, able young man.
 
I then had a conversation with his mum and I said, “I am terribly worried about what the future holds for Tyler.” He had only just been diagnosed. I was going through that emotional roller coaster, blame, guilt, dread, regret. What if I had got pregnant a week later? What if I had got pregnant a month later? Would my child be okay? All of those things and she said to me, “If there is one thing I can say to you, is don’t waste your time worrying about it. Don’t worry about it. He will be fine.” She said, “I wasted a long time worrying about how my son would turn out.” She said, “He has just finished with his girlfriend because he was bored with her. She didn’t finish with him. He is going to college.” She said. “And he is lower functioning then your son.”
 
I mean for me, I think the message would be. It is still your child. They have awful lot to offer. They are just different. They are not wrong, they are not ill. I don’t even think that autism counts as a disability really. They are just different and you just need to understand the way they think, the way their mind works. There is nothing wrong with going through that cycle of you know, “what did I do, is it me?” You are going to go through that anyway. But at the end of the day you will come out the other side of it and you will appreciate your child and you will realise that actually it is not all bad.
 
One of the things that I saw about children with autism, it was a badge actually and it says, ‘God gives special children to special parents for special reasons” and I think that is a lovely expression because you become, you become a different type of parent I think to a child with autism.
 

Nicki and Mark experienced a straightforward process of getting a diagnosis after nursery staff...

Nicki and Mark experienced a straightforward process of getting a diagnosis after nursery staff...

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Nicki' Tyler was born after an extended labour of three days and was born with a normal delivery but needed to be revived after he was born. As he developed he didn’t really have any health problems. He had a number of cysts on his eyes which are just one of those things we were told. When he got to the age of about a year he was still developing normally, crawling, walking, etc. and then his speech didn’t really come on very well at all. We had some concerns about it, he wasn’t really babbling and the normal baby talk that you get and I spoke to the health visitor and continued to do so.
 
They didn’t think there was anything too much to worry about and the health visitor, as he got older the health visitor arranged some speech therapy. They didn’t think he needed speech therapy because the few words he did say by the time he was about 20 months were very clear. There were only four or five of them. Eye contact wasn’t good and understanding didn’t seem to be particularly good. He had a series of hearing tests which all proved OK. By the time he went to the play school when he was three, on his third birthday we took him into play school and said, “We do have some concerns about Tyler.” He was clean and dry which was the requirement. But they said, “Oh don’t worry, it will be fine.” A week later I went back in and said, “What do you think?” And they said, “Oh we think he is displaying autistic tendencies.” It had been lurking in the background of my mind for a while. Neither of us were aware of any autism in our families were we?
Mark' No.
Nicki' And so he was then fast tracked through the PDDAG [Pervasive Development diagnostic Assessment Group]. Eventually he went through a number of tests with Griffith scores which were low. Initially they diagnosed just learning difficulties and said it probably wasn’t autism. But then he went through as I say a PDDAG assessment and was diagnosed when he was about three and ten months, may be just four. He was very young wasn’t he?
 

Nicki and Mark felt ‘overwhelmed’ when they first went into Tyler’s school because it felt so...

Nicki and Mark felt ‘overwhelmed’ when they first went into Tyler’s school because it felt so...

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Nicki' Then we got, because we had a diagnosis, so before Tyler went to school he had a statement which was fantastic. Because he was at our local pre-school at the time the natural progression there would have been for him to go to the school that was linked to that pre-school. So both of us took it upon ourselves to go and look at a lot of schools in the area. That particular school that he was supposed to go to, or that is the natural progression of things has a completely open playground. They don’t have a special needs unit until the child reaches 7 and there are at least 31 in a class. So knowing our son he would have been gone playtime he would have run, he would have thought it was have great fun and he wouldn’t have looked back and he would have been lost. He would have been sat disrupting all the other kids, not really knowing what was going on, wandering around thinking oh this is boring. It would have been awful. So we went to visit a number of schools didn’t we?
Mark' Yes.
Nicki' Including the special school that is actually quite close to us but the location of it is irrelevant because they get transport anyway. But we went to look at a school called [school]…. They specialise they just don’t have children with ASD but it is primarily children with ASD and we went to have a look round and we stayed for a very long time didn’t we.
Mark' Yes.
Nicki' And we were overwhelmed.
Mark' The minute we walked in there we knew that that was the right place for Tyler. It was …
Nicki' Safe.
Mark' Yes.
Nicki' And they understood …
Mark' I think that was our main concern, safety, wasn’t it?
Nicki' Absolutely. And you know we didn’t want him to be discriminated against or ostracised or any of those things and this school demonstrated absolute understanding of ASD and the way in which he would behave.
 
The class sizes are very small. There is only 8 in a class and that is with a teacher and two or three TA’s in every class. They do things, the sensory things as well. So they have bubble rooms, and they take them swimming to the hydro-therapy pool and they take them horse riding and all these extra things that he wouldn’t have got in a mainstream school. The other concern about mainstream is that he would have dedicated time. He would have a TA dedicated to him. The maximum he would have been able to get would have been four hours a day, which means that it wouldn’t be all day. So for the rest of that he would have been disruptive, wandering off, all those things I mentioned previously.
 
And the other thing is with TA’s and this is a purely personal view and I am sure there are fantastic TA’s out there, but it really is pot luck. You may be lucky enough to have a TA who has just followed a child who has just followed a child with ASD right the way through school and has a lot of experience, but you may also get a TA who is brand new to autism and almost learns based on your child. And I didn’t want my child to be the subject of someone’s learning. I wanted experience for him because he only gets one chance at being a child and having an education. So that was really important.
 
So we felt very comfortable the special school. We went back again and took Tyler with us and he loved it. So when the decision came it had to go to a panel to decide which school he went to Mark and I actually sat in the building where they made the decision and asked the question, “What happens if we don’t get the school
 

Nicki was very upset when a member of staff “tutted” loudly at her son’s behaviour at a...

Nicki was very upset when a member of staff “tutted” loudly at her son’s behaviour at a...

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Tesco on a Saturday is a joke I think almost. And … but I sat Tyler in the main part of the trolley and he is a big boy for his age, so he couldn’t possibly sit in the seat so we walked around Tesco and I gave him a magazine off the kids shelf and he was perfect. Sat there looking at his magazine, wasn’t flustered, didn’t go into meltdown, it was fine. I got to the checkout and the checkout lady, Tyler didn’t understand that the book had to be scanned so I could pay for it. So I took it off him and I gave it to her and said, “Please be quick.” And he said, “You are a naughty lady. You are a naughty lady.” Because he thought that she was taking his book and she went ‘Tch Tch hm’ very loudly so all her colleagues on the other checkouts could hear, got all of their attention, looked at me, looked at Tyler going into meltdown and looked back at them as if to say, “Look at this woman who can’t control her child.”
 
And that stirred up a whole load of emotions for me. I was torn three ways. Firstly it was to say to her; ”Who do you think you are? You don’t know me. You don’t know my son. How dare you judge me? And how dare you bring it to the attention of your friends.” That was my first reaction. My second reaction was to ignore her completely, ignore it completely, shut it out, pretend it wasn’t happening and just deal with Tyler. My third reaction was to say to her, “My son is autistic,” and approach it in a way that was, you know, please understand. And actually of those three I didn’t now which way to go. So I just stayed quiet, dealt with Tyler and got out the shop.
 
And a couple of weeks later we were in B & Q or, you know, a DIY shop and Tyler was playing with some things in the shop and it was time to go and he didn’t want to go. So you know he screamed a bit and banged his chest a bit and he was stood near a little boy who was also playing with the same things and the little boys mother came over and took his hand and moved him away from Tyler because she didn’t want him being near Tyler and I said, “It is not contagious you know.” But it hurt, it really hurt that somebody felt they should remove their child from where my child was.
 

Nicki organised one to one swimming lessons for Tyler at her local swimming pool.

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Nicki organised one to one swimming lessons for Tyler at her local swimming pool.

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But I was keen for him to keep some sort of activity, structured activity so enrolled both of our children, Tyler is the older one, Emma is 5, Tyler is 6, at our local swimming classes and took them over there.
 
Tyler was completely disruptive, you know all the other children were doing floating across the pool with a … you know kicking their legs with their float, and Tyler was doing backstroke up the pool, completely disrupted the class. So I went in to see the manager and I said “I have a need for my son to learn to swim. How are you going to meet that because he is disrupting the class?” And I was quite forthright about the fact that you know, he will learn to swim, and you need to find a way to do that. And they accommodated me very well and he now has a one to one lesson, the entire pool to himself, and the instructor gets in the pool with him and I don’t pay any for that. Because they recognize that there was a need that they needed to meet. So that was really good and then that continues and he is a very good swimmer now.
 

Mark used the NAS cards at the cinema.

Mark used the NAS cards at the cinema.

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Mark' One of my experiences, I took both our children to the pictures while Nicky was at work one day. It was a half term period for the schools. I took them on an early morning showing and we had to sit quite far back because I got there relatively late compared to other children and Tyler was constantly kicking the seat in front of him. Now it was an elderly lady, not an elderly lady, but a middle aged lady and man sat in front of me and Tyler and Emma was sat on the end. And he was constantly, constantly kicking the chair and I kept on telling him and touching his knee and saying to him not to do that. And he stopped for five or six minutes and then he would carry on again without realising what he was doing and the guy who was stood in front of me, actually stood up and was very confrontational and said, “Are you going to stop your son from kicking the chair?” So I stood up, took my wallet out and Nicky got some cards from the internet.
Nicki' From the National Autistic Society.
Mark' ...saying about autism. And I said, “I would love to stop him from kicking your chair, but he is autistic and doesn’t understand. Take this card.” And just sat back down again and on the way out from the theatre the guy actually looked at me and sort of I don’t … not apologise, he didn’t apologise verbally, but you could see that he was shamed by what he had done and way he had acted so I mean.
Nicki' Yes. Those two incidents I had actually prompted me to get some of those cards. Because they are just little business cards and they just simply say across the card, ‘This young person has autism.” And then it just gives you a couple of bullet points of what autism is and it says if you want to know more please contact the NAS or go to the website and for us, or for me they just stopped me getting into that, do I shout at this person for being so rude?” or do I get upset? How do I deal with this? So it is much easier to do what Mark did and just hand over a card and leave it at that.
Mark' I am quite a fiery bloke myself so, I mean for me to stand out and actually pull out my wallet and give him a card was a major achievement on my part as well as the guys and my son’s and everything else and to be fair it took a real lot of doing because it was really quite a stressful situation. I mean had things, had he have raised his voice, then I probably would have raised my voice back, but he was like very confrontational but not to the point where he was….
Nicki' Shouting.
 

Nicki describes how difficult it is for Mark, the main carer of their children, to get a job...

Nicki describes how difficult it is for Mark, the main carer of their children, to get a job...

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I mean the other thing that presents a small problem is that in terms of working arrangements because now they are both at full time school, most couples then both have full time jobs. Well with Tyler we can’t do that because school holiday cover would be very difficult. Emma can go to holiday clubs at her school but Tyler doesn’t have such a provision although they have just appointed somebody to look at the holiday provision and things that are across the special schools, so hopefully by 2008 that will be an option and for me that signifies that actually the government is changing its view on children SEN and they are starting to provide more facilities which can only be a good thing, but for now it means that I still work full time and Mark has to work hours around schooling.
 
So even when the kids are at school because he can’t switch between jobs every term, so he still does a part time morning job which he does before the kids go to school and we are looking at options for ways that he can do work that is term time only. But as a man that is far more difficult to secure than it is as a woman, because there are lots of jobs within schools that you can do term time only; you could be a school cook or a dinner lady. Lots of organisations offer jobs to women that are term time only because they understand about parents back into work and all those sorts of things but they don’t offer the same for men. So people who have role reversal per se find it much more difficult. Which is what we have got isn’t it?
 

Nikki and Mark have tried not to create routines for Tyler.

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Nikki and Mark have tried not to create routines for Tyler.

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We don’t take him. We don’t restrict ourselves from doing anything because of Tyler’s autism. He has to adapt. If he finds it difficult we help him do that, but we won’t set the routine. So for example when it is school, we bath them on you know regular nights, but when it is school holidays they might be bathed first thing in the morning instead of at night. We don’t give them the same things to eat all the time. We don’t have the same times for eating all the time. Sometimes we might go out for dinner. And we have always done that. We have made sure that our routine is constantly changing. Because I don’t want to get into a situation with Tyler where you know it is 6 o’clock and dinner is not on the table so he goes into meltdown. We just won’t have that. So we do all sorts of different things to test him I suppose.
 

Nicki now feels that there is no knowing what the future holds for her son, he has made such good...

Nicki now feels that there is no knowing what the future holds for her son, he has made such good...

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Nicki' And because now you know Tyler’s progression is such that it doesn’t play on my mind. I don’t think oh I have got a disabled son. What is the future going to hold for him? I don’t think those thoughts any more, because we have seen such movement and such improvement in the last two years that it is just, you know there is no telling what the future is going to hold. You know the sky is the limit. With the right support from us and the right opportunities, Tyler will develop into a very happy, well balanced adult, who has a fulfilling life. I am absolutely convinced of it. Why shouldn’t he? So you know, I think it is all about, not seeing it as a barrier to anything. If we see it as a barrier and we treat Tyler’s autism as barrier he will too and as far as I am concerned you know he is a great kid. He is worth getting to know. He has got some great qualities about him and we are very lucky to have him. So you know he is going to achieve. He is going to be…he may not be a rocket scientist. He may be, who knows?
Mark' He will certainly be a gamesworth.
Nicki' Yes, may be he will write video games for Nintendo when he is older. I am sure that would be his dream job. Games tester may be.
Mark' Yes.
 

Nicki's group have put forward their views about sports facilities for disabled children to the...

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Nicki's group have put forward their views about sports facilities for disabled children to the...

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I help run a parents support group for parents of children with autism and Asperger's and as part of that we had a representative from the Council come who is responsible for the leisure strategy in [town] and we were very keen to put forward our views as parents that there is very little in terms of special educational needs leisure facilities. There’s no holiday clubs for children with special needs, there is nothing like that. A lot of the pools in [town] have split changing rooms and no family changing rooms which means that once Tyler becomes eight, he needs to go into a changing room on his own. That is just not possible. He just won’t do it. He will get distracted. It won’t be that he can’t do it it will be that be that he will in there and he will wander round and he will think oh showers great fun and stand in the shower. It just won’t happen.
 
So we have put all those issues to her and she is considering those as part of the strategy. So we raised a number of other issues, you know there should be holiday clubs for special needs children, there should be trampolining if we want it. And Tyler loved that. And it is such a shame that he can’t do that any more. They need to accommodate the growing number of children with special educational needs in [town] so we put that forward as our views.
 

Nicki and Mark get a “degree of comfort” from the experiences of a relative who is on the spectrum.

Nicki and Mark get a “degree of comfort” from the experiences of a relative who is on the spectrum.

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Nicki' The good thing about it is, there are three or four other bus drivers in the same flat, in the same block, and none of those have ever been told that he is autistic, but it is not difficult to spot that he is not quite your average guy and I think they probably look out for him.
Mark' Yes.
Nicki' And that gives us the degree of comfort as well. Because you know he can be subjected to ridicule and, he is an adult, we can’t be there looking over his shoulder and protecting him all the time and he quite often doesn’t even realise that he is the subject of ridicule. And I suppose there is a degree of comfort in that but it is just knowing that there are other people around him who will be keeping an eye out for him you know and if he is put in a difficult situation that he will have somebody in the same block that he can call on. So… I mean he is independent isn’t he?
Mark' Yes.
Nicki' You know he drives and he takes himself off to bus rallies and all those sorts of things. He is living quite a …you know a satisfying life as far as he is concerned. And I think that is all we can ask for. That is all we want for Tyler. We want him to be the best that he can be and have a life that he is happy with, and so we are just doing our best to facilitate that aren’t we?
Mark' Yes.
 

Nicki and Mark’s daughter used to say that Tyler was 'fantastic', not autistic.

Nicki and Mark’s daughter used to say that Tyler was 'fantastic', not autistic.

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Nicki' Yes, I mean Emma now, we explained to her that you know Tyler is not like the children she goes to school with. In a very gentle way and for a while she couldn’t get the word autistic and she used to say Tyler is fantastic and we said, “Yes, we agree entirely.” You know it was always fantastic instead of autistic, which is fine. But now she knows that Tyler is autistic and sometimes she will say, “Why does Tyler do that…” you know when he gets he beats his chest, like Tarzan. “Why does Tyler do that?” “Well that is Tyler’s autism.” And the other day we were having a discussion and she said, “She needs to live in a very big house so that she can have Tyler come and live with her or at least have dinner with her, like [uncle], like Uncle [uncle] comes to have dinner with us.” So …
Mark' And we have never even mentioned to her that [uncle] is autistic.
Nicki' No.
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