So your next thing was to get a statement?

Yes which isn’t as easy as it sounds [laughs]. You know getting a statement is a whole other battle, the same as getting a diagnosis. You are constantly pushing forward and asking to be assessed, asking to be seen, what do they think? And everybody else seems so laid back but you are living with it, day after day. They just see you once a month, you know, you do feel you are just a file on their desk. But with the statement, it is a very formal procedure you have to go through, and so you fill out the paperwork and you send it off and initially I just assumed that he would get one. I didn’t realise that people were turned down all the time and you know you have to really, really, really, really be struggling before they will even consider assessing you and unfortunately the school… I don’t know if I am being unfair if I say they weren’t terribly cooperative, but they just gave the line that he appeared to be coping which as far as the LEA is concerned means “well he doesn’t need a statement then”.

So we kind of like left it another six months as you have to and went through the procedure again and of course in that six months it was getting harder to get Callum to school and the signs were much more obvious and the teachers did have to admit they were struggling because just the procedure of getting him into class at 9 oclock in the morning was difficult because he was so upset. He had to be pulled away from me. He was in tears. We had to go in early so it didn’t upset the other children because it was starting to upset the children in his class and that needed an extra teacher. So it was requiring more hours of their time.

Callum was getting more frequently upset during class in the day, so again he is needing attention, extra attention then. So it sort of became undeniable that the school was struggling to meet his needs. Callum wasn’t able to access the curriculum fully because half the time he was crying, half the time he wasn’t going in at all. He was physically sick at school because he was so anxious and it just became, a ridiculous situation, so the school did start putting in reports to the LEA explaining the difficulties and I can’t remember now how long the whole process took, probably, well it was two years, but we eventually did get a statement and initially it said he could have support in the classroom but I think everybody agreed that the situation had gone so far we would never get him back to that school. And it is a very busy school, it is a big heavily subscribed school.

So he did actually end up going to this autism provision after a period out of school completely so again it was hard for him going into the provision. And he had to go in with support as well as the teachers. He went in with his respite worker but he made the transition and obviously a provision is only five other children in one classroom, but he still needed like the one to one and as I say he only managed an hour a day and that was still a struggle to get him there, because he has been so traumatised by the whole mainstream school experience.

The hardest thing, one of the hardest things I find is other people, you know that is the thing I am always bothered about. I know it is a problem more in my head and other people just say “I don’t care what other people think”, but you know from when he was little and he used to scream and head bang and people used to stare in shops. And going to school and in the playground and other parents that don’t know me, seeing me carry him or him crying and even now, you know when he goes out in his slippers he looks different and going into our local post office that we go into almost every day, and they say, “Hello.” And he doesn’t say hello back. I feel uncomfortable with that and apart from that the other hardest thing was the whole school thing; taking him, me dealing with the teachers. I would have counted that as the worst thing ever but it is history now and I have moved on.

But I think ongoing it is peoples attitudes and peoples assumptions and the way people look at you even now, when it is obviously a school day so why isn’t he in school? And I have not had anybody say it to me yet. I have had people say, “Oh aren’t you at school today?” in a nice way. And I have said, “Oh no, he is home educated.” But it is just everybody’s assumptions that, even other parents; “Oh but bring him along because he will love it” and I am like “he won’t, he will hate it”.

And just getting that message across is really, really hard because people just haven’t come across it or they have heard of it but they have got no idea about the implications on everyday life and as I say, we can’t do normal things. He won’t ever go to a birthday party or family gatherings. We have got a christening coming up in a couple of weeks. It is my brother’s son’s christening so it is immediate family but there is no way Callum could go you know, no way and even close family, I think, struggle with how difficult it is for Callum to do something like that. But it is. It is difficult and I have got to the stage where it is not worth making him do something like that. You know why would you make somebody do something that they really don’t want to do that would make them unhappy? So, other peoples attitudes.

For me and my partner [name] it has been just like a huge wedge again in the middle because all of my time is taken up with Callum. Both of our sleep for eight years has been disrupted by Callum and again [partner] feels the same resentment as Kayleigh that we don’t go out, we can’t watch a film, we can’t have a meal in peace. Nothing is simple and we don’t have, we can’t have a babysitter like anybody else because Callum couldn’t possibly just be left with somebody. We can’t go out as a family because he can’t cope with the noise or the change or other people. So we just don’t do anything normal like normal families do, which I think me and [partner] kind of accept now, but I think, I know Kayleigh is still very resentful and I think it will get worse as she gets older. But I am hoping equally that now Callum is out of school he will, not be more normal, but hopefully cope better with things that would mean that perhaps we could do some things that other families do, like have a birthday party or go out for a meal or things that at the moment have just been impossible. So yes, a huge impact on the family.

What did they actually do at the centre? Was it done on one day?

No, no, he has actually been to this unit a couple of times and we stayed for three weeks so it was a very, very comprehensive assessment. And during our time there Callum was observed 24/7 and he was filmed and he had therapy sessions with a one-way mirror or two-way mirror where people could observe him and observe body language and we came out with a sort of telephone book size report with all the different observations and he had specific tests that he had to undergo but yes the whole time was made up of me undergoing training and interacting with him and him interacting with others and him on his own in one to one sessions. And also they had reports from our local paediatrician so yes he had a very, very thorough assessments that all went together to form the final diagnosis.

I mean how did you find those three weeks?

I think really horrible in one way, really horrible you know just being away from home I didn’t like and being away from my daughter and knowing that she needed me too. But I knew that it was like the last stop. I knew that at the end of that they would either give me a diagnosis or they would send me away and say it is just a development thing, or it is emotional behavioural problems and I was a bad parent that is kind of like what I expected. I dreaded that being said. I dreaded it all being put back on me. I knew that wasn’t right because I am just so attentive with both my children and my daughter is so the other end of the scale, you know she excels at everything and it is a bit of a natural but I like to think I have played a part too and I just feel why hasn’t it worked like that for Callum? So I knew it wasn’t me but you do kind of like have to go through everything before it is eliminated that it is not a parent, you know it is not a parenting problem, it is a condition. So yes, that gave me a sense of relief as well.

Did you feel you learnt a lot doing this at the time?

Oh I don’t know. It is one of those horrible, you know big brother type situations I don’t think anybody likes to be being watched all the time, you know are you doing it properly, so I didn’t like that aspect of it. I mean I guess if I look back I will have taken something away from the experience, but yes the best thing for me was getting the diagnosis. It was worth it for that, but I can’t say I would ever want to go through that again. It reassured me that I was doing everything right really and it is not me, you know, it is the condition that Callum has got causing all these problems.

How did you get referred to [name of unit]?

Through our paediatrician, yes. Yes. We had kind of like exhausted everything locally I think and they were at a bit of a dead end and they actually referred us out of county to this clinic that they use. They are quite specialised in autism and autistic spectrum disorders so they felt it was the best place for us. I think it is really difficult when you have got a child who presents behaviours in one area, say at home, and presents very differently in school, which is very typical of Asperger’s children, because they are intelligent enough to be able to cope in school. They know it is not acceptable to throw things around.

Admittedly some children do that but Callum was one of the ones who bottled it in all day at school and as soon as he came out he was so aggressive you know it was so sad because you knew that there was a reason for his behaviour. He wasn’t just being a horrible little boy. He was really upset and having Asperger’s means that he can’t communicate,

The support group, [name of support group], it basically started out as a parent support group, and quite a smallish number of parents just meeting once a month of an evening in a church hall. And just kind of like a social group and we would all share experiences, you know, “this has happened at school” and “what should I do?” and there is always somebody who has been through it who is able to help you. The group has really grown over the last couple of years and it is amazing. Every month there is a new family and they came with the same old story, we all come with. Everybody still seems to go through the same hell basically and again primarily school related; lack of understanding in schools.

We have recently just registered the group as a charity and we are really trying to take the group forward. We have lots of big ideas about education and awareness, getting some training in the school, support for the over 16s of which there is none at the moment, things like respite care, social work teams, just everything and anything really. We just want to basically raise awareness and help our children and future generations and particularly our children for when they are older, when they leave school or become leaving school age. So yes, lots of work to be done.

But yes that was a really good source of local support, to exchange ideas with families, you know have you tried the diet, have you tried this and just people you can phone, and people who know what it is like, people who know, if they come round your house and your kid kicks off that is okay and we can just leave and you don’t have to excuse any behaviours or you don’t have to say “oh sorry, he won’t do this”, but … that is lovely you know. There is nothing better then not having to explain it all away. That is really nice and from that Callum has found his own friends who are like him so he doesn’t feel strange and he just has fun like other kids have fun with their friends you know that is lovely that he has actually had a bit of happiness for the first time in years I actually saw him laugh you know, and it was just lovely. Why shouldn’t he have a friend, you know? Brilliant.

I have got my elder daughter who is eleven, and she is a lovely little girl, very well adjusted I think considering everything that has gone on but obviously she has been through a lot. She has grown up and for a good three years or so, she was physically abused by her brother and she witnessed her brother attacking me physically on a daily basis. She witnessed him harming himself. For those two years they attended the same school together she had to be very grown up. She was called in by dinner ladies to find out what was the matter with him. She was asked by teachers in the playground could she come and calm him down, because he was crying and she just often found him wandering about upset and she just dealt with it herself.

So going back a few years she was only about eight herself and I just think that is an awful lot for a child to cope with. And then there is all the playground stuff, “is that your brother?” and she has had what she calls the embarrassment to deal with. She has felt neglected and in fairness to her she has been neglected, she has been pushed to the sidelines because by the nature of his behaviour I have had to deal with him as a priority, you know because he has been a danger to himself. Just really basic examples, like screaming all the time, so she hasn’t ever been able to watch a film, we haven’t been able to go out as a family because he wouldn’t go out for all these various reasons. We have had a few attempts when Callum was younger at going on holiday and we are usually lucky if we make the destination before we turn round and come home because he was screaming. And at the time we didn’t realise that it was the change, he didn’t like change, he didn’t like the journey. There are so many things.

We have actually made it on holiday and then come home the second day into it which has been devastating for Kayleigh. We have planned days out and then cancelled them on the morning, because we couldn’t get Callum into a car. So I feel Kayleigh has suffered more than anybody. I mean me and my partner [name], we are adults and we can rationalise it a little bit, but for Kayleigh it has been a terrible time.

And she gets jealous that Callum has all these appointments and she doesn’t understand they are boring, but he does get lots of stickers and he gets rewards if he has done really well, because we have just had such a terrible time with him, that if he did something good we were so pleased with him and he used to get treats if he went to school, which of course she didn’t. Because I just expected her to go to school but if Callum actually went to school for a whole week it was such an achievement I felt I needed to buy him a present. Well I actually had to use it as an incentive to get him to do it in the first place.

Yes, well Callum has had quite a lot of different therapy. Going back sort of right to square one he initially had speech therapy because he had no speech and then he wasn’t using speech properly. He had occupational therapy because of his sensory problems to get him used to touching things like water, which he just could not tolerate touching. The most recent therapy he is having is the CBT – the cognitive behaviour therapy – which is to help him with his irrational fears and his phobias, which as I say was the weather, blood, anything that would be like a world disaster or an extreme weather condition, a road crash, anything that he might be injured in, the beach, seaside, flooding, Callum could go for a walk for ten metres and think of ten different things that might happen to us even as extreme as a meteorite landing on us.

That is the sort of thing he came out with. There might be a tornado, an earthquake, so actually when we did have thunder storms it was a real, real problem and not just when there was a thunderstorm, but leading up to it. If there was talk of it on the news, if it even looked rainy… and then it got to the point where he was just obsessed with the clouds and worrying that they looked like rain clouds so it was just a huge part of our life. And, as I said, Callum didn’t want to leave the house you know and this was all while he was at school, but it was happening when he was out of school as well.

It didn’t matter, he was just so consumed with fears and anxiety and those were just the ones he could tell me about you know. There is still another million other things that he thinks of and he is quite a way through his therapy now, so, he has been going weekly, but he is much, much, much, much better. I mean on a day like today he wouldn’t even have considered going out, because the sky is not blue, it is grey and that would mean, you known, blah, blah, blah, but he is coping remarkably well now. But he still does have fears and I think my understanding of Asperger’s is that that will be lifelong and I am on quite a few email groups and it is not uncommon. I thought I must be the only parent in the world who had a child like Callum that worried about this that and the other but it is not uncommon for children to be worried about storms and natural disasters but equally they can be frightened of buttons and balloons and I do accept that even though we might be over the thunderstorms one there is probably another anxiety just around the corner, or an irrational fear because I think it is the nature of their condition.

Oh gosh, again [I’m] physically, mentally, emotionally completely consumed by it. I have been depressed. I have got to the point where I thought I can’t cope with this any longer when he is at his worst physically, he cut me, bruised me, held a knife to me, that little boy that you saw, you know it doesn’t seem possible but he did. He tried to get out of a car while it was moving. He has been out on the road. He has tried to jump out of his window. All this and no sleep and I have to say that up until April last year I worked full time as well, so I shared the care with my mum which you know bless her she has played a big part because he has been out of school so much. I was at the doctor’s , I had antidepressants, I take sleeping pills. I was actually made redundant from work last year which although I was devastated at first turned out to be a blessing in disguise because I then felt able to make the decision to remove him from school totally. But I do just feel I have had years of no sleep, lots of stress, lots of tears, just desperate feelings, you know, feeling on the edge, feeling like you can’t carry on, can’t live with him, but can’t live without him, you know. Where is the light at the end of the tunnel? And I feel in a much, much better place now he is out of school I must say.

But the last little while, while he was at school I just couldn’t go to sleep at night. I was worrying about the next day and predictably hed wake up and wouldn’t want to go school and just the thought of phoning the school every day made me feel sick. I worried so much and my whole life has been meetings for the last five years, six years, constant meetings. Meetings – why isn’t he in school? Why isn’t he going to school, just endless questions and pressure I feel all targeted at me, it has been so, so hard and really with no support.

What kind of information have you found most useful?

Probably books. It is amazing actually how many books on Asperger’s there are out there. The Jessica Kingsley publications, I mean there is just I would say hundreds of books on Asperger’s and I love reading and I have got this thirst for knowledge and I have the internet and I have read books on peoples experiences, going to listen to speakers, adults with Asperger’s , there is so much information out there when you can sort of uncover it and once you get your name on a few mailing lists and that then you tend to get to hear about what is happening and what is going on. Yes, just going to conferences and that sort of thing really, getting as much information as you can all the time. I mean even now I feel in quite a nice place but I still read everything and look into everything.

And is there anything in particular you would recommend someone else to read?

I think usually anything by Tony Attwood is good. It is difficult to think of one, just one thing really. There are so many good things. I have just read one very good book. It is about home educating children with Asperger’s which is good, well autistic children I think it is called. Sorry yes, really difficult to think of one good thing. I have just read so many over the years and I loved the fiction book, The Curious Incident of the Dog in the Night Time. I have read it about three times and just don’t get bored with it ever. I think everybody should read that [laughs]. I have got a few copies and I just hand them out to my friends all the time, and say “oh you haven’t read it, oh you must read it, it is brilliant.” So yes, I love that book.

What did you like about it?

I could relate to it and there was one bit, it was one of the first times it really brought it home to me, perhaps how Callum sees things because he had given a description and he couldn’t remember anything that this woman said, but he remembered like a brooch she was wearing in really good detail or the jacket or something. I just thought ‘oh that is so Callum, you know, they don’t take any notice of what we are yabbering on about it, it is all about attention to detail, maybe if you had one jewel missing out of your earring or something. How they have just got a totally different way of seeing things. Yes. But I loved it. I just loved his perspective and you know his perception of everything.