Not Stupid (20 page)

W
hile Patrick will be able to fend for himself to some degree in the future, the same cannot be said of Angelo. He is, and will remain, a very vulnerable individual. Several past incidents involving Angelo still give me nightmares because, even today, the possibility remains that they could recur, as his sense of danger remains as limited as it ever was. We cannot take our eyes off him for a second, and we found out the hard way what can happen if we do.

In the summer of 2003, when he was 10 years old, Angelo performed another disappearing act when we took a caravan holiday near Great Yarmouth in Norfolk – undoubtedly the worst holiday we’ve ever had. As always, Sean didn’t want to come along in the first place and his mood didn’t improve when the school’s Sunshine Variety coach, which we had borrowed, broke down on the way. ‘That’s it,’ he said. ‘We’re going back home!’ But, desperate for a much-needed break, I wouldn’t hear of it.

Once the coach was fixed we continued on our way, but within three days of our scheduled week’s holiday, Angelo went missing again. This time he’d managed to get out of the caravan unnoticed – it didn’t take a second – and off he went.

As soon as we realised he had gone, Sean whizzed off like a madman in the Sunshine coach to look for Angelo while Coral and I wandered around the site hoping to find him. I was worried sick because the site was situated near to a steep cliff. My heart felt as if it were coming out of my chest and I was hardly calmed when I heard a driver telling another that ‘some f***ing nutter driving a Sunshine coach’ had just cut him up.

It transpired that Angelo had decided to walk into someone else’s caravan but, as luck would have it, the caravan was occupied by a lady who just happened to be a special-needs teacher who taught children with autism! Angelo, it seems, just wandered in and sat down in front of the television and declared, ‘I want to watch Bambi.’ The lady contacted the site’s information desk and then sat with Angelo until we arrived to collect him two to three hours after he had disappeared. ‘That’s it,’ declared Sean. ‘Pack the cases. We’re going home!’ That was the end of that holiday.

I crave for Angelo to initiate a conversation with me. I’d love him to be able to tell me what he’d like for his birthday or for Christmas, the way other kids do. But it wasn’t until he was 10 years old that he ever showed any interest in his birthday or the Christmas festivities.

Prior to that Christmas I’d search his face for any expression of emotion or even just a smile, but each year there had been nothing of the kind. This used to make my heart ache and often
I found myself making an excuse – usually that I was going to make the beds – in order to get upstairs on my own for a little cry. Why couldn’t Angelo be more like Patrick, who was always excited and had often written out his Christmas wish list way back in August? Patrick was always thrilled to open his presents and would often be keen to help Angelo open his.

But, at Christmas 2003, I was elated when Angelo suddenly became excited when he saw his presents and even wanted to open Patrick’s presents too. It was as if a light had been switched on in his head. The previous January, Angelo had managed to blow out the candles on his birthday cake and these two incidents, which probably seem like very small steps to most parents, were very significant milestones for Angelo and our family. I cannot describe the feelings I experienced at these times, but they were very precious moments that truly lifted our spirits.

Angelo has a fascination for climbing. When he was 11 he scaled the fence at the bottom of our garden and jumped down into the garden of a neighbour, who became annoyed with him and called out, ‘What do you think you’re doing in my garden?’ Stressed out, I called over to him, ‘Why are you talking to my son like that? He’s autistic!’

‘Oh, I’m so sorry,’ he replied.

But, at the end of the day, how was he to know? Since then we’ve heightened the fence between the gardens to avoid a repeat of the incident.

Shortly afterwards, we had a particularly frightening incident when our neighbours, who were planning to sell up, had scaffolding erected in order to have their house reroofed. I became
concerned as soon as I saw the scaffolding. Because of Angelo’s love of climbing, I was worried the structure would prove to be just too big a temptation for him. I asked the neighbour if he would consider putting a tarpaulin around the scaffolding so that Angelo couldn’t get at it. Our neighbour agreed, but we had not reckoned on Angelo’s powers of determination.

Work commenced and a number of tiles were lifted from the roof and stacked in piles, leaving only the wooden slats that had previously lain underneath them. Angelo was in our garden playing on his trampoline. Obviously I cannot watch him every second of the day, although I do keep a very regular check on him through the back window.

However, on this occasion, I quickly became concerned when I couldn’t see or hear him. I hurried outside and called out to him but there was no response. At this time Angelo had been going through a ritual of clapping his hands but I couldn’t even hear him clapping at all. I became very worried and continued to call out to him. Suddenly I heard three claps, but, hard as I looked, I could see no sign of him.

I hurried to the front of our house. Patrick was already there. When we looked up to follow the sound of the clapping, there was Angelo sitting inside our neighbour’s chimney!

‘Look at him! What’s he doing? He’s going to get killed!’ screamed Patrick, who, by now, was going completely berserk. I was absolutely terrified that if Angelo moved again he could slip and fall further down into the chimney and I was wondering how he’d managed to get up there in the first place. Thank God he hadn’t tried to step on the piles of roof tiles. If he had he would certainly have fallen from the roof.

‘Good sitting!’ I called out to Angelo, a simplistic phrase we often use with autistic children in our care when we want them to continue sitting still. ‘Good sitting, Angelo!’ I was desperate not to say or do anything to panic him into moving suddenly and equally anxious to calm Patrick down. Suddenly, all the neighbours appeared – some carrying cameras – while I frantically called the fire brigade, who swiftly arrived.

A fireman asked me how Angelo had managed to get up there in the first instance and, on learning he was autistic, asked me how best to deal with him. I told the firemen not to speak to Angelo in long sentences because he wouldn’t be able to cope with that. ‘Just be concise in whatever you say to him and he’ll understand you.’

Meanwhile, Angelo had climbed out of the chimney and was now sitting quite happily on top, dangling his legs down the side of it, as he observed all the goings-on down below and watched excitedly as two firemen scaled the roof, managing to avoid the piles of tiles as they made their way towards the chimney.

While one neighbour tried to keep me calm by rubbing my back and comforting me, I telephoned Sean, who drove the short distance home with his mum and aunt just as fast as he could.

‘Angelo, out of the chimney,’ called the firemen when they got near him.

‘No, thank you,’ Angelo cheerily replied.

‘Angelo, out of the chimney.’

‘No, thank you!’

‘Get hold of his arm,’ I shouted to the fireman nearest to
Angelo, ‘and he’ll follow you.’ It worked and, slowly but surely, the firemen carried him down to ground level. What a relief!

However, this experience did little to put Angelo off his love of climbing. As far as he’s concerned, it’s the higher, the better, and I was very relieved to be able to stop him from repeating his escapade the following day.

A couple of years later, when he was 13, Angelo found his way onto our flat roof. I was working for Health Call at the time and, as usual, I rang Sean just to check everything was OK back at home. This time, however, there was no answer. I tried ringing again, but still no answer. On the third attempt, a breathless Sean picked up the telephone. ‘What’s going on?’ I asked.

‘Your son has just climbed out of the window and got onto the flat roof,’ he replied. ‘He’s jumping up and down on the edge and I’m trying to get him in but he won’t come!’

Eventually, Sean outwitted Angelo by showing him his
Thomas the Tank Engine
model. ‘Thomas wants you to come back inside,’ he said. It worked and Angelo climbed back indoors through the window.

Living with an autistic child is difficult for the carer, but it’s not too good noise-wise for neighbours, either – and particularly if your neighbours’ kid ends up sitting in your chimney! However, we have been fortunate in that respect, since the lady living in the adjoining house is sympathetic – in fact she now works with us – and, on the other side, there’s a lady who is often up in the night to tend to her own crying baby.

I find it difficult to speak about Angelo without getting
emotional because he needs so much help to cope with life. He’ll need support for the rest of his life and I worry about who will care for him when I die. No one knows Angelo as I do – he comes to me for everything and I find that so worrying when I look to the future.

Do I have any feelings of hope for Angelo in the future? Not really, more like feelings of despair, to be honest. The only way I can get a reaction from him is when, sometimes, if he says a word and I repeat it, I may get a fleeting moment of eye contact, so I say it again and he repeats it. It’s not a conversation, just a word here and there. He’ll throw his arms towards me when he wants something. I say, ‘What does Angelo want?’ Then he’ll do it again. I repeat, ‘What does Angelo want?’

Then I’ll say, ‘I… ’, he’ll say, ‘I… ’ before I add ‘want’. He’ll then say, ‘I want… ’ and, after a pause, he’ll say, ‘cake, please, Mummy.’

Often, when I give him what he wants, he gets muddled and says something like, ‘Thank you, good boy.’

You can almost see Angelo’s brain ticking over as he attempts to communicate. I think it’s important to encourage him and praise him whenever possible. If he wants to see inside a bag he’ll say, ‘Open box.’

‘No, Angelo, try again.’

‘…bag.’

‘Well done, Angelo, good speaking.’ And I’ll give him a big smile and the thumbs-up sign. If he looks at me when he talks I say, ‘Good looking, Angelo, well done!’

At the moment the conflict we have is over an old pair of socks. He wants to wear them every day. If I try to wash them
there’s a tantrum and they’re becoming threadbare. He’ll stand in front of the washing machine watching them go round and round and will often stop the machine early so he can retrieve them and put them in the drier. But he’ll rarely wait longer than five minutes. After that he’ll get them out and put them on. Now, whenever a hole appears in them, he’ll bring them to me, then come back with a needle and cotton expecting me to mend them, which I do.

He’s a much bigger boy now, but fortunately, his frequent frustrations are not expressed physically, although sometimes he’ll tap my leg with his hand to show how upset he is. However, as soon as he’s done it, he wants to pull his hand back. When he’s really cross he’ll just jump up and down, up and down, gritting his teeth and squeezing his hands together as his frustration increases.

Because he acts in a manner that would normally be associated with a much younger child, I sometimes find myself talking to him as if he were years younger and I have to remind myself not to. A recent psychologist’s assessment tells us that Angelo’s speech is equivalent to that of a three and a half
year-old
child, though I’m convinced it’s more than that. It’s just that he didn’t really know her when they met and he was not at all interested in cooperating with her. I sometimes wonder if I’m trying to cover up for him in my own mind.

Angelo’s very loving but, at the present time, still has absolutely no sense of danger. He’s still into climbing, which is a worry. He’s become a big, stocky lad like Patrick. With Sean being a big man, I’ve become the titch in the family. Angelo is sensitive in his own way and he hates to see me upset. If he sees
me cry he’ll come up to me and wipe my tears and give me a kiss on the cheek, so he’s certainly much more in tune with my feelings – probably more so than anyone else.

His relationship with Sean is much improved and they often go out in the car or to the park together. But I still can’t enjoy a conversation with Angelo, which is so frustrating. I’d love to know what he’s thinking. If he’s quiet I know he’s up to something. When I suspect he’s too quiet, I look for him and could find he’s taken a dozen yoghurts out of the fridge and eaten them all, or he’s emptied all the bags of crisps. One day recently he found a birthday cake and peeled all the icing off it so he could get at the sponge. Another time he emptied a box of washing powder all over the floor in the kitchen and I found him lying in it, shouting out, ‘Snow! Snow!’

That’s when he’s really hard work. Recently Angelo was diagnosed as having attention-deficit hyperactivity disorder. The diagnosis was made in less than 15 minutes and the central-nervous-system stimulant Ritalin, which is used to calm the recipient down, was prescribed. I could hardly believe the condition could have been detected in such a short examination. Nevertheless, I administered the Ritalin but it gave him really bad heart palpitations. He began screaming and shouting and waving his arms around, so I took the decision to discontinue the medication.

I have to say, I cannot really believe Angelo ever had ADHD in the first place. I believe it’s just that now he’s in his mid-teens he’s going through puberty and his hormones are going all over the place. ADHD is often cited as an excuse for bad behaviour but I cannot agree. The condition has a definite diagnosis and
its severity is calculated on what is known as the Connor Rating Scale (CRS), which we use at our school. Although some of the questions were difficult to answer, we used the scale on both Patrick and Angelo, but felt it didn’t really apply to them.

Now, even though Angelo’s in his teens, we have only a slightly better routine in the evenings. We usually try to get Angelo to bed at around 11 p.m. We could get him to sleep at 8 p.m. but, if we did, he’d be awake again by 11 p.m., and that’s no good for Sean or me. So, at 10.30 p.m., we start the process of getting him to bed. We take him upstairs to his room, though quite often he’ll just follow us downstairs. Again, we take him upstairs until he decides to stay there to watch either TV or a video, or perhaps to look at his books.