Authors: Anna Kennedy
So often Patrick was probably seen by others as a naughty child. If only the cards saying, ‘This child is not naughty, he/she is autistic’, currently supplied by the National Autistic Society, had been around at the time, maybe we wouldn’t have had quite so many disparaging looks from other shoppers.
Angelo’s mood swings were quite extreme. Sometimes he would be really high, other times really low. I noticed how different foods could trigger him off. He used to like eating angel cake but that would make him really hyper and he would eat only certain brands of certain foods. For instance, he loved custard cream biscuits but, if I bought any brand other than Crawford’s, he wouldn’t eat them. We tried to get him to eat vegetables but he just didn’t want to know. He still won’t drink milk – nor will Patrick – and I’ve since discovered that many children on the autistic spectrum have an intolerance to dairy products.
When Angelo was five, we travelled to Disneyland Paris for a short holiday. Sean didn’t want to go at all really but he accompanied me, the boys and Coral. We went to Davy Crockett, a very nice self-catering area just outside the main theme park, where holidaymakers stayed in log cabins.
Our cabin had two outside doors, the first of which we locked; the other was blocked by suitcases to prevent the boys getting outside without being noticed. When we wanted to leave the cabin we had to distract the boys by moving the luggage to gain access to the door and made efforts to replace the luggage in exactly the same position afterwards.
However, one morning, our attention to detail must have slipped. As Angelo was sitting down on some stairs in the log cabin I got up to fetch him a chocolate bar but, in that instant, he disappeared. I wasn’t too concerned: it had been only a short moment and he couldn’t have got far away, could he? However, after realising Angelo had wandered off, Patrick became hyper and Sean went straight into panic mode. And, after a few moments, so did I, particularly when there was no response to our calls.
We knew that, if he got lost, Angelo wouldn’t have the language skills to get himself out of trouble. He couldn’t tell anyone his name or anything else about himself other than that he was hungry. Not only that, he had an obsession with caravans and the site was full of them. He could have wandered into any one of them.
The search began. We asked people in the other cabins if they’d seen Angelo, but most of them couldn’t speak English, which made the situation even worse and more frightening. Despite our best efforts, four hours had passed, by which time I was beside myself with worry, dreading what might have happened to Angelo.
Patrick made things far worse, shouting out that someone had probably taken Angelo and chopped his head off. ‘Oh, shut
up Patrick!’ I shouted. Coral was crying and Sean was in a desperate state as we climbed into a little golfing buggy to continue our search. I sat in the back, crying hysterically. ‘What are you crying for?’ demanded Sean angrily. ‘That’s not going to make it any better!’
On site, some building work was being undertaken about a 20-minute walk away from our cabin and it was there that a German fireman who didn’t speak English spotted our little boy playing happily in the mud – minus his trousers and socks. Angelo was caked in mud, but I just didn’t care, we were so relieved he was safe and well.
As for his trousers and socks, well, we never found them but they were the least of our worries.
When Patrick was five years old, he was very disturbed. He was soiling himself, sleepwalking and experiencing nightmares. He wouldn’t even sleep in his own room because he feared ‘the angry lady’, who visited him in his room each night, so he had his mattress by the side of our bed while Angelo slept between Sean and me. I know a lot of children have imaginary friends, but Patrick would talk vividly about the angry-faced lady with long white hair, a red dress and no shoes. Now I realise she may even have had a happy face; however, a lot of autistic children find it difficult to interpret happy or sad expressions.
‘She gives me a kiss on the cheek like you do, Mum,’ he’d say. I remember thinking it was a really weird experience when Patrick informed me the angry lady had at last moved out of his room and was now residing in the wardrobe in our bedroom.
Meanwhile, if ever I left the house, Patrick would stand at the window screaming his head off. His behaviour prompted me to
seek advice from our GP and I was reassured that boys generally develop more slowly than girls and that Patrick would probably ‘grow out of it’.
But Patrick continued to scream on the way to school each morning. I felt so desperate, that I was a horrible mother. ‘Stop it, Patrick, stop it!’ I’d say each time he wrapped his legs around Angelo’s buggy in an attempt to stop us getting to the school, and some mums would look at us, probably thinking I should get a grip on the situation, and I hated the looks of pity I got from the other mothers. Quite often it required a teacher to take hold of Patrick’s legs while I took his arms in order to carry him into school as he kicked and screamed at us.
It was a draining experience. Patrick was not sleeping well, which meant neither were Sean and I. It was a nightmare and I always knew what to expect when I tried to take him back to school again in the morning.
Once in school, Patrick would not go into the classroom. Instead he spent most of the day in the corridor and refused to join his classmates in the playground. One way he would avoid mingling with the others outside was to make his lunch last the whole hour. Eventually, though, he did go outside, but we were told he would rather walk around the outskirts of the playground than play with the other children.
But, when he did join the others, it was clear he had no idea how to interact with them. A couple of times, because he didn’t know how to ask for things, he would stroke the other children’s faces to get their attention, until one of them thumped him.
Then he would tell us he didn’t like school because ‘the eyes’ were looking at him.
‘What eyes, Patrick?’
‘There’s eyes there, they’re looking at me. I can see them in the classroom.’
Patrick was assigned a one-to-one support worker but she was able to spend only a very limited amount of time with him because she was needed for other children within the school as well.
Realising Patrick needed even more support, I also spent a lot of time at the school. Lunchtimes were particularly difficult for him because these were unstructured times. He continued to refer to ‘the eyes’, which obviously worried him. I eventually realised what he was talking about – his classroom door had the word classroom written on it and the two o’s on the sign were, in Patrick’s mind, a pair of eyes.
Furthermore, he was troubled by a ‘mouth’, which swallowed him at school. This was the pair of swing doors that led into the main hall. He didn’t like the sounds in school – ‘they hurt my ears’. It turned out he was referring to the sounds of metal chair legs scraping along the floor.
There were other instances that made Patrick stand out. For instance, when his teacher told the class, ‘OK, then, everybody, stand up and get on with your work,’ they would all do so, except Patrick, who would remain sitting on the carpet. ‘Go on, then,’ she’d say to Patrick, but he would just sit there. It was only later that she realised that, because she hadn’t said his name aloud, he didn’t think she was talking to him. ‘Patrick, stand up,’ she’d say, and he would do as he was told.
He would constantly draw angry pictures. Some would feature the school being blown up; others were pictures of
himself in his school uniform with his eyes bulging and smoke coming out of his ears. He was even making furious tape recordings in which he expressed his hatred of the school. It was at this point that I realised some of the other children had been saying things to him and this was confirmed beyond doubt when, one day, he asked me, ‘Mummy, what does “cuckoo brain” mean?’ then, on another day, asking, ‘What’s a “bird brain”?’
The pressure on Sean and me was mounting up as we struggled to come to terms with Angelo’s autism and Patrick’s distress and consequent behaviour. I remember being at the hospital one day when Patrick decided to have one of his major blowouts. A woman standing nearby stared across at us and asked, ‘Can’t you control your child?’ to which I angrily retaliated, ‘Here you are, then, let’s see if you can do any better!’
The woman’s face paled and she looked down at the floor, uttering an apology and excusing herself by blaming her dislike of hospitals, which had been making her feel very tense and irritable.
Having both the boys at home and looking after them
full-time
meant I’d had to abandon my plans of being a working mum. My life now revolved around our sons. I felt trapped and, in many respects, my life was a nightmare – especially when shopping.
One day, while shopping in a supermarket, we passed a basket containing pink balls. Unfortunately, Patrick had become obsessed with the colour pink. I agreed to buy him a ball but he wanted them all. ‘No, darling, one’s enough,’ I said, at which point he went
ballistic. Patrick screamed and screamed and struggled against my efforts to calm him down. Other shoppers looked on in amazement and it was only with the help of one of the store’s security officers that I was able to drag him back to our car.
Of course, undertaking any long-distance car journey with young children can be a nightmare, as most parents will readily testify. Again, I found this out to my cost when, in 1996, I decided to take the boys on the 266-mile journey from Hillingdon to Middlesbrough to spend part of the Christmas break with my family. This time Sean had decided to stay at home, so it was just Patrick and Angelo, who were six and three at the time, and I who made the long and boring trip along the M1 and A1 up north in our Ford Orion, accompanied by a bootload of Christmas presents.
As we travelled along the motorways in freezing-cold conditions, Patrick was endlessly asking me, ‘Are we nearly there yet?’ As we were 50 to 60 miles from Middlesbrough, a thick fog descended and I had to slow down to a crawl of 10 to 15 miles an hour. Things, though, were about to become a lot worse. Suddenly the car began to splutter and then came to a grinding halt in the middle lane of the motorway, a fault that was eventually diagnosed as a dodgy alternator.
We had found ourselves in an extremely frightening and dangerous situation. Frantically, I tried to restart the car, but without success. ‘Come on, Mum, start the car,’ Patrick called out. I could only watch helplessly as two lorries approached us from behind, then made our car sway as they passed us. I tried to call the Automobile Association from my, then analogue, mobile telephone but couldn’t get a signal.
It was far too dangerous to stay where we were so there was nothing else for it: I would have to get out of the car and try to push it to the hard shoulder. I was utterly exhausted when I released the handbrake and tried to steer and push the car while Patrick, helpful as ever, was asking me, ‘Why are you pushing the car, Mum? Just turn the key!’ The car, though, rolled just a very short distance, only partially making it to the hard shoulder, therefore remaining a potential obstacle to cars approaching us on the nearside lane of the motorway.
I got back into the car, switched on the hazard lights, and tried to ring the AA again, but still there was no signal and no one stopped to help us. Staying where we were, though, was not an option. I retrieved Angelo’s buggy from the boot of the car, wrapped the boys up and put Angelo in the buggy, then covered him with his favourite blanket that just had to go everywhere with us.
It was bitterly cold and there was a thick fog as I began to walk with Patrick and push Angelo in his buggy down the side of the motorway looking out for, maybe, a house or a petrol station where we might find someone who could help us. Not surprisingly though we hadn’t got far before Patrick began to cry with the cold and I realised I should take the boys back to the shelter of the car.
Returning, I settled Angelo back in the car but, somehow, I managed to shut the door on Patrick’s finger. He screamed and screamed, then Angelo joined in too. Desperate to calm the boys down, I began to sing, ‘The wheels on the bus go round and round… ’ This journey had become an absolute nightmare. I was stranded on a cold, foggy motorway with both my boys
screaming their heads off. What on earth was I to do? Suddenly, there was a knock on the car window. I turned and screamed out when I saw a man’s face pressed against the window.
‘Are you a lady in distress?’ he asked.
Seeing our predicament, he kindly offered to take us the rest of our journey in his car, so I took the decision to place my trust in him. He could have been anyone and I had to make an instant judgement as to whether his sudden arrival was either a blessing or just an extra aspect of the nightmare we were going through – but what choice did I have?
My anxiety was being sensed by the boys and my mobile telephone was still not receiving a signal. Thank God, though, that the driver turned out to be a very kind man who was making his way home after a business trip. I explained that we had been heading for my mother’s home in Middlesbrough and that I’d had no success in contacting the emergency breakdown service. I decided to accept his kind offer and emptied our bootful of Christmas presents, Angelo’s buggy and the boys into his car and off we went. Thankfully, the movement of the car helped to settle the boys quickly, and they both fell asleep.
Although this gentleman knew nothing of autism, he was very interested to hear more about this developmental disorder as we chatted along the way. When we eventually arrived at my parents’ home, I offered him some money as a contribution towards his petrol costs but he wouldn’t hear of it, and was happy just to wish our family luck in the future. In the end, all he would accept was a spare bottle of Italian wine and a panettone that I insisted he take in return for his kindness.
I
t was hardly surprising that there would be plenty of matters to raise when Sean and I attended Patrick’s annual review at St Mary’s School in June 1997, but the revelation that he had been diagnosed three years earlier with Asperger Syndrome without our knowledge really knocked us both for six – and that’s putting it mildly.
Now we knew.
One of ours sons had autism, the other Asperger Syndrome. While recognising some parents of children with debilitating conditions face far worse situations than autism, at the time we couldn’t help thinking how things could get any worse. Well, as far as Hillingdon Borough Council was concerned, it seemed some councillors were prepared to prove things could, indeed, get far, far worse if they were to have their way.
We first became aware of the barriers about to be put before us when it was time to try and get Angelo into mainstream education at St Mary’s School. Angelo had already attended the
nursery at the school, as I was keen to help him establish some form of interaction with other children.
His time at the nursery had not been without incident, though. One day, after managing to leave him there with a
one-to
-one support, I returned later in the day to pick him up, only to be informed by one of the support workers that he had gone missing for half an hour.
They had been so worried that he might even have left the premises but eventually they found him locked up in a galvanised shed full of bicycles, scooters and outdoor equipment – and it had been a boiling-hot day. Because Angelo had very little ability to speak, he had been unable to shout for help, as all the toys had been piled up in front of him.
I remember the looks on the faces of the staff at the nursery. They had been so shaken up by the incident and were, to say the least, very relieved to have found Angelo safe and well.
After I enquired about the possibility of Angelo joining Patrick at St Mary’s School, we received a letter telling us that they didn’t feel they would be able to meet Angelo’s more specialised needs.
We were told he could be kept for a further term in the nursery because his needs were ‘too complex’ to handle in a reception class, but the afternoon sessions would not be a guarantee of full-time admission and would be subject to regular reviews. A taste of what was to come arose when I was informed by a statementing officer, ‘You might as well take that extra term, Mrs Kennedy, because no one else wants your son.’
If I could have put my hand down the phone and strangled her, I would have done so. I was livid, frustrated and hurt all at
the same time that someone could say something like that to me, particularly as this was in the wake of my reading all about the importance of early intervention. What a nasty thing to say! I was grateful to the nursery for offering Angelo the option of an extra term but speaking to this statementing officer made me feel as if she was just writing off any chance he might have for his future.
A number of meetings and assessments were held to establish the best way forward with Angelo’s development. Because he would still not allow other children to come near to him and was showing only flickers of ability with words and numbers, it was considered that he was very much a baby, stuck emotionally at 18 months in development. This was particularly obvious whenever he resisted leaving his pushchair and also his attachment to a dolls’ house at the playgroup. If ever Angelo could not find the dolls’ house, he would refuse to stay there. He would make very little attempt to communicate with the other children and, despite being encouraged to work and play alongside a member of staff, this resulted in very little success.
In spite of our doubts, it was considered that the nursery at Grangewood School in Eastcote would be a more appropriate place for him, although significant concerns were raised as to how best to separate Angelo from me, particularly bearing in mind the significant stress that we, as a family, were undergoing at the time.
Meanwhile, Angelo’s sleep patterns were showing no sign of improvement. In fact, they were worsening. It wore us down whenever he refused to settle. Most evenings he would become
much noisier. He would laugh uncontrollably and begin running and jumping around the rooms. When, at last, he did sleep, it would be for only a short period of time before he was running around, jumping and laughing all over again.
The situation became practically unbearable and led me to ask a doctor for help. Two types of preparation syrup were prescribed on a short-term basis in an effort to calm things down, but they made them even worse, one causing Angelo to be completely hyperactive, the other turning him into a
zombie-like
state that made him very pale and lethargic with no sparkle in his eyes at all. He became very heavy-eyed and sleepy but, desperate for sleep as we were, there was no way we felt we could continue to administer the medication to him because of the adverse effects it was having on him.
At this time Angelo was also attending weekly sessions at the Child, Family and Adolescent Consultation Service, which he particularly seemed to enjoy but which, sadly, folded owing to a lack of resources.
At home, Angelo was constantly demanding my attention. However, I was encouraged by an improvement in his eye contact with me and by his allowing me more physical contact with him. One vignette from a psychotherapist’s report emphasised this improvement: ‘Angelo fell hard. I felt he must have hurt himself. He stood, seemed shocked. Mum went to comfort him. He went rigid. She could not hug him or comfort him. He was so resistant. He continued as if nothing had happened.’
Later she wrote, ‘Angelo banged his knee. He stopped. He cried, ran to Mum who hugged him. They looked at his knee together.’
Problems aplenty remained, though. Angelo was fiercely resistant to being washed or bathed, and would become very easily distressed whenever his surroundings were unfamiliar.
At an interim review of Angelo’s progress at St Mary’s School I would have settled for two days’ teaching with three days’ home tuition, while Sean tried to convince the governors that home provision would, in fact, be cheaper for the borough than sending Angelo to a residential school. Nevertheless, we failed to persuade the governors to accept him at St Mary’s because they felt the school would be ‘unable to provide for his needs in the highly structured environment of full-time education and within the limited space available’.
Meanwhile, I was still struggling to get Patrick to go to school. One day, six months after his diagnosis with Asperger Syndrome, things came to a head. On arrival at the school, I really had to struggle to get Patrick out of the car. When I finally succeeded he put his hands and head against the brick wall outside the school and just sobbed and sobbed and sobbed.
‘Please don’t take me in that place any more! I don’t like it! Please!’
Another mother taking her child to school was passing by. As I had Angelo in the buggy I asked her if she would ask Mrs Docherty, the head teacher, to come outside to see me. To be honest, I was at my wits’ end.
Mrs Docherty came out and saw Patrick sobbing his heart out. ‘This can’t go on,’ she said. ‘What are we doing to this child? We’re just damaging him.’ She offered to write a letter to recommend Patrick no longer attend St Mary’s and that he should be offered home tuition instead.
With this in mind, Sean and I decided to convert our garage into a classroom for Patrick, but getting home tuition didn’t happen overnight. Eventually, however, a lovely lady called Vanessa arrived to give Patrick five hours of education a week – two and a half hours one day and two and a half hours another – but all that rather depended on whether Patrick wanted it.
Patrick would find it very difficult to distinguish what was real and what was not. He’d try to fit us into a world he’d seen portrayed in videos. While he had an obsession with
Thomas
the Tank Engine
and anything to do with dinosaurs, he had at the same time an intense dislike of human beings. He thought people were rubbish and this was reflected in the angry pictures he would draw. He hated it if people came to our house. To him, they were intruders and he would shut himself away upstairs in his bedroom if anyone arrived. ‘They’re intruding. They’re not showing respect,’ he’d insist. As for me, I hadn’t been showing him respect because I had taken him to school each day.
For some reason, Gordon the Engine in his
Thomas the Tank
Engine
book had ‘angry wheels’. Could it be the thought of steam coming from the wheels? If he saw models of the engines in the shops, he’d want them. If I told him I would buy him one it was never good enough, he wanted all of them and this, invariably, led to tantrums.
Patrick knew
The Gingerbread Man
and
The Three Little
Pigs
videos word-perfect and would constantly ask the same questions over and over again to ensure he received the same answer each time. He would read dictionaries and ask the
meanings of words he’d read so he could see that what he’d read was correct. He needed constant reassurance. He was a very anxious little boy.
His obsession with dinosaurs began after he watched the 1993 movie
Jurassic Park
. We’ve since been to visit the Natural History Museum in London dozens of times to satisfy his appetite for anything dinosaur-related. Nothing else there interests him. He can look at any bone on display and tell you what Cretaceous or Jurassic period it comes from.
I remember one particular incident when he was seven years old. It was the occasion of his Holy Communion at Our Lady of Lourdes church. Patrick was looking very smart and we tried to prepare him for what would happen. However, when he heard that the priest, Father Collin, would say ‘Body of Christ’ before giving him the host, Patrick became very anxious. At that time, we had no idea that many children with Asperger Syndrome can take anything said quite literally.
When it was time for Patrick to go to Father Collin, he pursed his lips and said that he didn’t want the host because he would be swallowing Jesus Christ. After much explanation at the altar that it would be like eating a piece of bread, he finally agreed to take the host. ‘Is there any butter on it?’ he asked loudly. We were very fortunate that Father Collin is a patient man.
Mary Milne was head of client services on Hillingdon Borough Council. She was also in charge of the statementing process and I had already given her a pretty hard time over Patrick’s and Angelo’s statements – first, because there had been so many
woolly comments in them and, second, because they were not applicable to children with autism.
A statement is a passport to get the right sort of support and education for a child and the financial package. If the statement is not right, you are not going to get the correct support, so it is crucial that the statement be absolutely relevant to that particular child. Children with autism require speech-
and-language
therapists, not because they can’t speak properly, but because they have a communication impairment. They need to learn how to interact socially but, while looking at the statementing process, Sean soon realised that the council tended to write particularly woolly statements.
The statements would highlight the need for regular
speech-and
-language therapy, but what does regular mean? I have a regular Christmas dinner – i.e. once each year – but therapy should be held on a much more frequent basis. Parents who don’t know this may think regular means frequent and often, but, if it doesn’t, it’s no use to anyone, especially if the child has a communication problem. With that in mind, Sean and I took a lot of time and effort to ensure the statements for Angelo and Patrick were exactly as they should be.
We already felt let down by the powers that be. Angelo was due to have been assessed for speech-and-language therapy in the nursery because it was felt the statement had not been meeting his needs, but this had not been undertaken because of a lack of funds from the London Borough of Hillingdon, the consequence of a
£
20,000 overspend. Two hours’ autistic support for Angelo was, obviously, nowhere near enough and we were determined not to lie down and allow this situation to continue.
We were desperately looking for schools that would accept Patrick and Angelo. Our desire to find somewhere suitable saw me making dozens of telephone calls and, in all, I visited 26 schools within an hour’s drive of our home after being told by the statementing officer of the London Borough of Hillingdon that the ball was in my court, that it was up to me to find a school because my son Angelo was ‘unique’, although we now know there are a vast number of children just like him in the area.
The officer’s opinion seemed particularly harsh to me. Where would I begin? I couldn’t understand how she could make such an assumption about a child she had never even met. It seemed so impersonal.
At first I looked for schools for children with autism, but the ones I visited were for children at the more severe end of the autistic spectrum, and some were like institutions. The scale of the challenge was brought home to me when I realised that one of the schools had just five places for the 55 applicants and several others were also full to bursting.
I was becoming increasingly worried. Having discovered the importance of an early start in education for autistic children, I was looking for a place that seemed more like a mainstream school that had been adapted in some way to meet the needs of my boys. To me it was obvious that there was no way Angelo would have been able to cope with around 30 or 40 other kids in a classroom.
I have since discovered that many teachers in mainstream schools have found it very difficult to cope with children with such specific needs when they also have 30 or more other
children to teach at the same time, and that many parents of autistic children have been forced to send their offspring miles away from home to obtain a decent education, most notably to the specialist Boston Higashi School in America. This was even suggested to us by an educational psychologist but, after consideration, Sean and I decided against sending Angelo to a residential school and decided to press ahead with our search for a specialist school in the UK.