Authors: Anna Kennedy
And so it was that our interest in The Lawns ended with all our directors and consortium partners unhappy. Meanwhile, the problem of overcrowding at the Upper School remained unresolved and time was running out before the new term was due to begin.
Desperate times called for desperate measures. The decision was made to obtain a further three Portakabins to house the extra Upper School students and to make use of the Mencap building adjacent to Hillingdon Manor until a more satisfactory solution could be found.
It seemed to me the whole issue of purchasing The Lawns had opened up a very unpleasant atmosphere between some of the directors and Sean and me, and, in the end, it had all been for nothing.
S
o where are we now as a family? Well, as individuals, we have all changed significantly since we embarked on this journey. When Patrick was out of school, his behaviour, even though I loved him, had turned him into a child I really didn’t like that much. Nowadays, he’s a completely different young man.
At the moment Patrick is very much into Eminem’s music. He seems to enjoy the ‘bad boy’ image portrayed by the rapper and frequently asks if he can go out and wear a hood. I always refuse, but he just cannot see why. He cannot appreciate the danger he could find himself in if he tries to mix with the wrong sort of people, or how he could be so easily led astray.
Patrick is very good at mimicry. He does an excellent impression of the comic actor Jim Carrey and grew up with my Northern accent even though he’s not local to the area, which is common between autistic children and their mothers. Now, however, his Northern accent seems to have subsided to some degree and he is beginning to sound more like a Londoner.
My brother Tullio now lives in London, too. He’s a jokey sort of character and gets on well with the boys, particularly Patrick, who has taken a shine to him. Patrick insists that Uncle Tullio ‘puts me out of my misery because he makes me laugh’.
Patrick has become a handsome and sensitive young man. He keeps himself clean and presentable and he’s kind and thoughtful, although when he gets a bee in his bonnet about something he can be quite selfish. That said, once he’s got it off his chest, he’ll usually say, ‘Sorry, Mum.’
He’s made incredible progress and I’m sure he wouldn’t have done so without our school. In fact, even if I had to go through the heartaches and ups and downs of the last few years all over again, it would be well worth it just to see how well he’s come on.
Patrick will definitely continue to need support in a work environment but I am convinced he now has the ability to get a job. However, while I don’t think he’ll have a problem getting work, I wonder if he will be able to keep it. That could be another matter owing to certain anxieties that sometimes overtake him, and he’s still a bit vulnerable and naïve.
At the time of writing, Patrick has a girlfriend! We are so pleased for him, particularly as it’s done his ego the power of good and because he had been convinced no girl would ever be interested in him. She has been very understanding and, when she discovered that Patrick had a fear of the police, she even arranged for him to be shown around a local police station in the hope he could overcome his anxieties.
His fear of the police almost cost him his life in June 2007. Patrick had popped down to our local corner shop to buy some
shampoo. While on the way he heard the siren of a passing police car and instantly panicked, so much so he ran straight into the road in front of two other cars and was extremely lucky not to have been run over.
His anxiety was heightened even more when a police car stopped. A couple of policemen got out and stopped him running any further. ‘Why were you running?’ one of them asked. ‘You were almost killed.’
Patrick began to panic even more. He told the policemen he had Asperger Syndrome. The policemen apologetically admitted they had no idea what this was. Then one of them searched Patrick’s pockets for drugs. He asked that, since Patrick had this syndrome, did he need to go to hospital? Patrick declined and asked the policeman to telephone me on our home number.
My heart sank when the telephone rang and I realised I was talking to a police officer. Whatever had happened? However, I was told not to worry, but that Patrick was panicking and had become very anxious. At the time I was wearing only my pyjamas, so Sean popped down to the corner shop to collect Patrick and to speak to the policemen.
To be fair, the police officer and his colleague had been very kind to Patrick. They told Sean they felt he was a good lad, and that Patrick should have some assistance to help him cope with his fear of the police – maybe visit a police station – and that he was a very lucky lad still to be alive.
Patrick was still very shaken when he arrived home but, in a weird way, I think this experience may have done him a favour in that his perception of the police had been that they were to be feared at all times. Now he had seen them in another light.
They had been helpful and kind, yet he was most disappointed that they’d had no idea what autism was.
Of course, having his first girlfriend has led to his bombarding me with a myriad questions, which, at times, has driven me crazy! Patrick analyses everything I tell him and everything his girlfriend tells him to ensure there are no hidden double meanings. It’s bloody hard work to give advice, give it again, and then again when, all the time, a little voice in the back of my head is screaming, ‘Shut up!’
Patrick tells me of his difficulties when he was trying to explain the intricacies of Asperger Syndrome to his girlfriend. ‘Why can’t I be normal?’ he asked me. I tried to reassure him by telling him it didn’t mean anything, that he’d always been the same person since the day he was born, that it’s not as if he’d just found out he was different.
All I ever really crave for in my life is some peace. Is that too much to ask? I always know if Patrick is about to give me a hard time with all his questioning because he usually starts the conversation off with, ‘Sorry, Mum, but… ’ That said, he is far more aware of the pressures he puts on Sean and me nowadays. He’s definitely more empathetic, but still insists on getting his own point across first!
Patrick didn’t even like human beings at one time – now he’s got friends, and people really seem to like him. Although he had convinced himself that no girl would ever like him, I have to say the opposite is the case. He has plenty of female admirers, several of whom have expressed an interest in going out with him or even being his girlfriend.
So far, I’ve been most impressed in the way he’s handled such
situations. He has made a point of trying to let them down gently by telling them he already has a girlfriend and that, in no small way, is down to the strategies he was taught at Hillingdon Manor, the Upper School and at East Berkshire College in Maidenhead, through role play, to deal with these situations in a sensitive way. He even told me he felt bad afterwards in case he had hurt anyone’s feelings. There’s no doubt he’s learned to be loyal, understanding and considerate and, I have to say, as a result, I am immensely proud of him.
Patrick began attending East Berkshire College whilst still at Hillingdon Manor in September 2006. This was a big step for him. His progression to this mainstream college came about after Sean Pavitt assessed him as being capable enough to cope. Patrick had been doing well at the Upper School and Sean felt moving on to East Berkshire College would help prepare him for a degree of independent living.
When he first attended East Berkshire College he did so for one day a week, this was a particularly stressful time for Patrick. Prior to being picked up by the minibus on his first day, he had been very anxious, though I wasn’t because I felt Patrick was in the good hands of members of staff from the Upper School who would be shadowing him.
Of course, Patrick’s anxieties were not unexpected. After all, he was used to attending a school with another 79 students, but, with 1,600 students in East Berkshire College, it was obviously a daunting prospect for him. However, with the support of staff at the Upper School and the staff at his new college, his fears and anxieties were allayed within a couple of weeks and he now travels to Maidenhead twice a
week, spending the rest of the week at the Upper School, where he has already completed his Duke of Edinburgh bronze award and, at the time of writing, he’s working his way to gaining his silver award.
In 2008 Patrick was due to leave the Upper School so a special goodbye assembly was held for him and two other students. All three were presented with a Hillingdon Manor school diary that showed pictures throughout the years of them with their classmates. It was a very emotional occasion and I was glad when a member of staff passed me a box of tissues!
It was decided that training would be required to prepare Patrick for the journey he would need to undertake to get from our home to the college, as this would consist of a combination of bus and train journeys. This was practiced throughout the summer holiday period until we were satisfied Patrick would be able to cope with the daily commute.
Patrick is now undertaking a Higher Options course, which covers maths, English, IT, vocational and art. He is hoping to commence a media studies course next year.
Looking to the future, I can envisage a time when Patrick will be able to look after himself, although with some support, which is why I’m trying to plug every hole, support-wise, for him now before I’m dead and gone.
Sometimes he watches the original
Video Diaries
, which we recorded in 1999, and, more often than not, it makes him cross. ‘I was a real brat when I was little, wasn’t I, Mum?’ I tell him he wasn’t, that he was just a little boy with a lot of difficulties in his life. I remind him of the problems he experienced in mainstream school and try to reassure him that, now he’s spent
time developing his education at Hillingdon Manor and East Berkshire College, he has developed into a really nice, handsome young man, which he truly is.
In 2006 a charity called HCPT – The Pilgrimage Trust – took Patrick and four other children from Hillingdon Manor to spend a week at Lourdes in France where Christian pilgrims regularly gather. Once there, Patrick telephoned me two to three times each day and, even after only the second day, wanted to come home because Lourdes was ‘too holy’ and there weren’t enough shops selling Eminem CDs! ‘The shops here only sell holy stuff.’ He asked if I would be putting up a Welcome home, son poster on his return, which made me laugh, but I did it anyway. Once home, Patrick gave me a bottle of holy water and a party cake, which Angelo particularly enjoyed.
At the time of writing Patrick mentioned something to me that happened in the past that still upsets and angers him – a particularly sad incident that had a huge effect on us all as a family. 2004 was not a good year for us. Not only did we have to shut down and relocate the original college, but I lost the baby I was carrying at the time.
When I first became pregnant I had experienced a range of emotions. I remember being at home on my own after the pregnancy test and walking around in circles in the lounge. At first, Sean was none too happy about the prospect of the arrival of another child, but he soon got used to the idea. As for me, I was rather selfishly hoping for a little girl because we would then have a greater chance of having a child without autism. Not only that, when she grew up, she would be around to look out for her brothers after Sean and I are dead and gone.
But, just 12 weeks into the pregnancy, after attending the hospital with Aunty Zita for a scan, I was told our baby had died and that I had a cyst on my ovary. I was devastated. Was I being punished for wanting a child without autism and thinking a girl could, in later life, look after Patrick and Angelo? I couldn’t help thinking so – after all, these were not good reasons for wanting to bring another child into the world. Coping with those emotions was made even harder because Patrick had become very angry with me. Didn’t I want the baby? It was my fault, and God was bad.
After taking just two days off work, I threw myself back into my routine. I needed to keep busy, but I remember hating all the looks of pity from the staff when I returned to work, as I’d told them only a couple of weeks previously about the pregnancy.
I have to say I was surprised and had a huge lump in my throat when Patrick raised the subject three years later. He told me how upset he had been when I lost the baby and how much he would have liked to have had another brother or sister, particularly as Angelo is so autistic they cannot even have a conversation or go places together on their own.
These days I am noticing Patrick can be embarrassed about Angelo’s behaviour even though he knows it’s not his fault and that Angelo’s difficulties are more apparent. Patrick can become cross with Angelo for his autistic behaviour and sometimes I need to remind him that Angelo’s frustrations can manifest themselves in a different way from his own.
I would love to be able to get into Angelo’s mind – if only for a while – so I could get an insight into his world, realise what he understands, feel what he feels, and know what he likes and dislikes. So much of Angelo’s world is a mystery to us.
At least Patrick is able to express his emotions, his hopes and his fears, which is why it would be far more enlightening for him to tell you, the reader, of how he sees his life, rather than have me try to do it for him.
What follows, in Patrick’s own words, is how a 17-year-old youth with Asperger Syndrome sees his life as it is today, how he reflects on his childhood, and how he sees his future.
Among my earliest memories are my school days at St Mary’s School. It wasn’t very nice for me because they didn’t know what Asperger Syndrome was so they couldn’t meet my special needs. Also, some of the other children would take the mickey out of me sometimes.
I found this very confusing. They called me names like ‘bird brain’ and ‘cuckoo brain’ but I didn’t know what they meant. I didn’t understand what was going on so I asked Mum why they were calling me names. She was surprised the other kids had been calling me names. I remember feeling quite scared at the school. I would feel intimidated by people’s faces because I didn’t understand their expressions. I used to run away because I was a bit of a wimp.
I felt different from the other kids and I remember kicking off because I didn’t want to go to school. I was having tantrums every day, but I didn’t know I had Asperger Syndrome or what it was. I remember kicking and screaming on the way to school each morning and some woman trying to make me feel better by showing me her earrings, but that didn’t work. I made up excuses
not to go to school, sometimes telling my mum that there were weird things she didn’t know about in the school, such as the ground would open up there and I could fall through it.
I couldn’t understand what my teacher was telling the class. When she told us all to do something like stand up, all the others would stand but I never realised she wanted me to stand as well because she hadn’t said my name.
I remember drawing pictures of me blowing up the school. I drew myself holding a detonator with my eyes sticking out and smoke coming out of my ears because I was so angry. I would grab my hair and tug at it. I was trying to pull it out because of my frustration. I didn’t feel as though I fitted in. I was kicking against my frustration and I used to think I was really stupid. I would make furious audio tapes saying how much I hated the school.
I really like Eminem’s songs. Sometimes, when I listen to the lyrics and I hear him expressing his anger as he refers to his past, it reminds me of my own past and my audio tapes. It reminds me of the times when this or that was happening to me and I was getting so upset that I was trying to tear my hair out. Eminem’s lyrics remind me of that feeling.
Not everything at school was bad, though. Most of it was, but sometimes it was quite exciting. I enjoyed taking things in to show my class – anything to do with Thomas the Tank Engine or the Jurassic Park movie. I’d take in toy engines or dinosaurs. I was obsessed by them both. I still like dinosaurs, but I’m not obsessed by them any more. I
still like any programmes to do with dinosaurs because they remind me of when I was a kid. But there’ll never be another film with dinosaurs that can ever be as good as Jurassic Park.
I used to get fact mixed up with fiction. I used to think what I saw in movies was real, that it was actually true. In Jurassic Park the rampaging dinosaurs and special effects fascinated me. I was really influenced by all that. Were they really real? The movie really influenced my interest in films and special effects and I’m currently reading the Jurassic Park book by Michael Crichton.
Jurassic Park and The Lost World – Jurassic Park are probably the first movies I remember watching. I bought all the toys that went with them so I could act out the scenes. Sometimes, after watching the dinosaurs in the films I would get a bit over-excited and try to bite the wheels off my toy cars while pretending to be a rampaging dinosaur.
I used to enjoy going to the Natural History Museum in London to see the dinosaur skeletons. That was because of Jurassic Park. I still go there, but not just to see the dinosaurs but because I’m familiar with it. That’s not such a bad thing, is it? I find prehistoric animals really interesting. Life back then was nothing like it is today. I’m not so interested in cavemen but it’s interesting to learn about our planet before we were on it. It would be fascinating to know if there was life on Mars, wouldn’t it?
I can’t remember lining all the things up on supermarket shelves but I do remember collecting all the Thomas the Tank
Engine toys. In fact, if I didn’t get the toy engines I wanted I’d scream and scream. I remember lining them all up in straight lines. Why? Because I’d been watching the videos and I was trying to recreate the exact episode with my trains.
When I was a kid I used to have so many problems, but I enjoyed being a kid. It’s just a shame I couldn’t do some of the things like the other kids my age that I might have really enjoyed. Most of my childhood was happy, it’s just that I had problems.
When Mum took me out of St Mary’s School I was really happy. Wow, I thought, this is freedom, I don’t have to go back and I can do whatever I want to at home. I can watch cartoons or Jurassic Park or play on the computer, maybe watch Disney films like The Lion King and so on. But then I had a home tutor. That was a nightmare. I just didn’t like being told what I needed to do. I didn’t enjoy that at all.
I was a bit worried on my first day at Hillingdon Manor School because I thought it might be a bit like being at St Mary’s School, but it wasn’t – it was good. Once I got used to it I had more fun and made more friends. It was easier to make friends because the other kids were in the same position as me and we could understand each other better than we could at St Mary’s. I liked talking to the other kids and messing around with them. I felt I fitted in much better there and I felt a lot calmer than I did at St Mary’s.
All in all, it was excellent at Hillingdon Manor School. Sometimes I wish I was still 10 or 11 or 12 and back at the school because I miss some of the good things I did there.
I liked to draw and play with my friends, and the teachers were very good.
One day actor Ross Kemp came to the school. He played Grant Mitchell in EastEnders and I was very excited because I watched it on TV. I was interested in the programme and I was a fan. I’d look up the internet for clips of the programme and I really liked Ross’s hard man image. It was very impressive. I have a thing about looking like a bad boy. I like that image. I’ve been influenced by Eminem’s lyrics. Eminem’s image is great, the way he poses. I like that. I’ve got a poster of him in my bedroom. I’m much more confident now, though I don’t like people to think of me as a big softie. I like to think I can be a bit hard at times, maybe a bit stern.
I was very nervous when I first met Ross but he was a very nice guy. I met him again last year and that’s when I realised he’s not such a big man after all, though that could be because I’d grown quite a bit since I’d last seen him. He’s not big, just bald.
Moving on to the Upper School was a bit nerve-wracking but I got used to it in the end. I particularly remember, when I was 14, moving into Elm class. That was good. The Upper School teachers are very good. They’ve been preparing me for life ahead but I still feel a bit immature – Mum often tells me I’m immature when I start acting out scenes from films or videoing myself just for a bit of fun. When I play the same Eminem song over and over again she finds it very irritating. It gets on her wick! But I just like the rhythm. Anyway, she said it was OK at first.
In my last term at Hillingdon Manor I did quite a lot of work experience. I worked in McDonalds, Woolworths and Iceland. Part of me was sad to leave Hillingdon Manor but part of me was happy to be moving on, even though I was anxious.
When I left Hillingdon Manor I attended East Berkshire College one day a week, which was later extended to two days a week. It was a bit daunting going there for my first day because it’s a lot bigger than the Upper School or anywhere else I’ve ever been, but I’ve got friends there, one called Colleen and another called Jo. It’s kind of frustrating because there’s a girl there with a crush on me and she asked me out but I’m already in a relationship. I’ve got a girlfriend.
Sometimes though I think girls are nothing but trouble. Sometimes I think why bother with them, but I guess I can’t resist them! I like girls a lot. Normally I find it quite easy to get on with them – depending on what sort of questions they ask me. One girl asked me if I thought she was pretty. I did, but I didn’t know what to say to her. I was scared to admit it because I’ve got a girlfriend.
At East Berkshire College I’ve been getting used to communication. I’ve studied tourism which is quite interesting. Finding out where Wales is was very interesting. I like it at the college. I’ve rediscovered art and I find that very relaxing. I’ve made some new friends but I still have some difficult moments. Although it’s a mainstream college there are students in wheelchairs and there are students with Down’s Syndrome and other problems. I think several of the students know what
Asperger Syndrome is now and I think I fit in OK. I can ask them questions to see if they understand my problems and that’s something I could never have done when I was at St Mary’s. That often comes back to haunt me.
School can get boring sometimes and I’m often very relieved when it’s time to go home. Sometimes I lose concentration during the lessons – that’s been happening for a long time. I’m quite good at relationships and I still like reading dictionaries, which is good. I’m very good with computers, though I can’t fix them. I just use them for the internet and playing computer and video games.
I find computer games very entertaining. Loads of kids do but most adults find them quite boring. I like Lara Croft Tomb Raider, Half Life, Jurassic Park: Operation Genesis, Doom 3 and Resident Evil.
I like playing video games and watching action movies. I’m interested in movie making and I’m interested in animals, though I don’t like rats or mice. I love sharks and tigers. I really like to see wild animals. I’d love to get close to a tiger or a lion because I’ve been influenced by the Crocodile Hunter, Steve Irwin, on television. I was a very big fan of his and was very upset when he was killed by a stingray.
I love animals and, sometimes, I have more respect for them than I do for people. I feel more comfortable around animals than I do with people. At one time I didn’t really like people at all. I’m still a bit wary of some people but I like talking to people even though I’m not always sure what they’re going to be like. I like people who are nice,
especially if they’ve got a good sense of humour. If it’s an evil sense of humour that’s even better! I like my Uncle Tony. He makes me feel at ease. He lightens me up when I’m in a bad mood and he tells me I can ring him up at night if I’m not happy. Now I have a new interest – painting Warhammer models. I often go to Games Workshop in Uxbridge and take my models along to paint. The staff there are really helpful and give me a lot of their time.
Nowadays I like to hang out with my friends. I like to socialise with people, maybe find new things on my computer, or watch good films. I think Bruce Willis is an excellent actor. I love the Die Hard series of films. My friends and I play in the arcades and go out for drinks, but we’re not allowed in pubs. I like bowling and chatting to girls – that’s my obsession at the moment. When I was younger I always thought girls were YUCK! But now I’m older that’s so different. I can’t resist looking at a pretty blonde girl and thinking to myself, ‘She’s fit!’ But when I’m with my girlfriend I wouldn’t do anything like that in case it was to hurt her feelings.
She’s a really nice person. I was very happy to have a girlfriend and she often sends me text messages. I was tearing my hair out at first because it was a new experience for me. She didn’t want me to keep dressing up like Eminem, though. When I had an annual review at school my tutor Chris even told me: ‘Patrick, put it this way, she’s met YOU not Eminem. It’s YOU she wants to be with!’
My girlfriend tells me she likes the way I look, my personality and the way I treat her. That makes me feel
very good, even though we sometimes have
misunderstandings
. Because I’ve been scared of policemen I wasn’t amused when my girlfriend told me she wanted to join the police force but, recently, a meeting was arranged so I could talk to a policeman and that made me feel a lot better. I explained to him how I felt but he explained you don’t always have to go to prison for certain things – it had to be for something really bad.
I went on and on at my girlfriend, trying to explain what Asperger Syndrome was, but she just told me it didn’t matter – it didn’t bother her, which is good. I think I did her head in a bit when I kept going on about a bad boy image. She thought I was just being silly.
She seems to understand my problems. I was not impressed when she told me she wanted to be a policewoman – what would she do if I did something bad? Maybe I was getting a little paranoid. Of course, if I killed someone she’d have to report me. But I wouldn’t do that.
I get quite embarrassed about some things in my childhood. I remember Princess Diana dying and how curious I got about that. Then there was the picture I drew for her of Buzz Lightyear. That’s definitely embarrassing, especially as I wrote ‘To Infinity and Beyond’ on it!
I remember going to Disneyland Paris and being scared of going into The Haunted House. I thought everything in it was real, but when I returned a couple of years later, I thought how pathetic I’d been for being so scared of going in there. It felt so different although nothing much had changed there… but I had.
I cringe when I see the Video Diary. Watching myself having a tantrum is a nightmare, it’s just awful. I find that particularly embarrassing, especially if I’m watching the video with other people. Some of it was very good though, like the bit where I’m showing off my hand puppet of a
T-Rex
dinosaur and visiting the Natural History Museum.
Mum looked very tired in the Video Diary but I don’t really think it was really my fault, although it must have been very challenging for her to look after me and Angelo. Sometimes I feel that, if I hadn’t been born, she wouldn’t have had to go through all that. If I watch the Video Diary now, I fast-forward it past the tantrums. I was very confused when it was filmed.