Not Stupid

by 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.

  Chapter Four

  Battling Bureaucracy

  It 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 offic
er, ‘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.