Not Stupid. Anna Kennedy

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      Fortunately, within a few days, the tension between Sean and me subsided and, after I’d made it clear to him that we would have to work together if he wanted to see an improvement in Angelo, he made more of an effort. Meanwhile, I’d spoken to Ingrid, a trainee social worker from Network 81, a support group of parents of children with special educational needs. She was very helpful and assisted me through the process of obtaining disability allowance.

      After a couple more days Sean was in a much better mood, which was surprising, especially since Angelo had had a very disturbed night, not having slept until around 4 a.m. I was absolutely shattered. Unfortunately, the following night he wouldn’t settle again. I found myself getting increasingly tired and cross with him, even though I knew I shouldn’t. Sean eventually snapped, ‘Shut up!’ at Angelo and went up to bed, unable to cope with his laughing loudly and constant running around the room. Angelo eventually went to sleep at 2 a.m. – a sleep pattern that would become all too familiar to us in the years to come.

      The less Angelo would sleep, the more hyper he would become. With his seemingly boundless energy and night waking, it was rare to get any decent sleep and often I found myself sleeping on the sofa downstairs. I even took to doing my housework in the early hours, reckoning I may just as well be doing something useful if I was awake anyway. Sean and I were becoming exhausted. Both Angelo’s and Patrick’s disturbed sleeping patterns were having a detrimental effect on us and the resultant levels of stress often made us irritable with each other – even to the point that I wondered whether our relationship could survive.

      Jocelyn Phillips worked for Portage – a service that supports parents with strategies in the home – and she turned out to be a great support to our family in the months to come. However, she disagreed with my views on not having Angelo attend Grangewood School and considered that his going to a mainstream school would not do him justice. Jocelyn felt that Angelo needed a specialised way of teaching and that Grangewood School was particularly appropriate to his needs. What a dilemma!

      When Angelo’s diagnosis was confirmed, an appointment was made at the Central Middlesex Hospital for a brain scan and, it goes without saying, there was little chance Angelo would be too happy about it. When a nurse attempted to put glue on the side of his temples in order to attach at least 20 wires, Angelo became very distressed and refused to co-operate – even when I held down his hands and someone else held down his legs he was too strong. It broke my heart to see him so distressed.

      In the end it was decided to return to the hospital another time and to complete the scan under sedation in the children’s ward. I was asked if Angelo had been tested for epilepsy, since it was believed up to 50 per cent of autistic children either have or can develop it.

      All this uncertainty, the lack of sleep, the worry and strain that we found ourselves subjected to meant that every day resulted in a roller coaster of emotions for Sean and me. It all boiled over a few weeks after Angelo’s diagnosis and resulted in a major argument between us during which I even threatened to leave home.

      Don’t let anyone tell you that living with autism is easy. It is testament to our relationship that it has survived so strongly over the past few years in spite of all the heartache and challenges we’ve had to face along the way.

       Chapter Two

       What is Autism?

      It had been a real kick in the guts to learn of Angelo’s autism diagnosis and I remember crying for six weeks afterwards. Sean and I knew nothing of the condition – in fact, my first instinct had been to wonder how long Angelo would live. I didn’t know anyone else who had an autistic child.

      So, what is autism? I didn’t like the sound of it. It’s such an ugly, harsh word. Basically, we felt that, after Angelo’s diagnosis, we had just been left to get on with it, since there was very little offered to us in the form of advice or support. Some doctors assumed Angelo’s condition was genetic, though, so far as we were aware, neither Sean nor I had autism in the family.

      I realised I had to pull myself together and that feeling sorry for myself was of little use to Angelo, Patrick or Sean. I had a thirst for knowledge and I embarked on a voyage of discovery. The trouble was, the more I found out about autism, the worse the prospects seemed to be. The outlook, in my eyes, was so bleak and confusing. Nevertheless, I remained determined to find out all I could about the subject.

      That, however, was not as easy as I might have initially hoped. First of all, I contacted the National Autistic Society, or should I say I tried several times without success. I should point out, however, that nowadays these problems have been overcome. Nevertheless, it was so frustrating trying to obtain knowledge at that time from an organisation that I just couldn’t get through to.

      At last I managed to speak to someone who told me she would forward some information to me and she recommended a useful VHS video that would be enlightening, which I paid for over the telephone.

      Six weeks later, I had heard nothing from them. No video, no information. Coral rang the society a couple of times to hurry them along on my behalf. They apologised and, eventually, the leaflets and video arrived through our letterbox. Watching the video for the first time was a truly traumatic experience. In fact, after just three minutes, I ejected it from the player and felt as if I was going to be sick – not because of the children featured but because of the severity of their condition. Some were rocking, others swaying from side to side. No disrespect to the children, but I couldn’t help thinking that, if this was all Angelo had to look forward to, well, that would be pretty hard to bear.

      It got to the stage where I couldn’t even keep the video in the house – I preferred to lock it away in the boot of my car. Meanwhile, Sean didn’t want to read any of the information leaflets we had received. He simply buried his head in the sand and it seemed he was unable to accept that a child of his could have such a condition, which made me feel very alone in trying to come to terms with our situation.

      Sometimes, even now when I’m at home with three other people, I can feel so lonely. Everyone seems to be doing their own thing. Patrick could be talking to himself upstairs in his room; Angelo, bless him, is in his own world, maybe playing on his trampoline in the garden; while Sean might be studying or using his computer. He has a Masters in IT, which means he spends a great deal of time fiddling around on the computer at home. For that reason I’ve always hated computers – to my mind, they are like ‘the other woman’ in Sean’s life.

      Because I wasn’t computer-literate at the time, I didn’t have access to the internet, although I had been able to find out a certain amount through my work with Health Call, a doctors’ answering service. The deeper I dug, the more I found out, but sometimes that just added to the confusion. There were so many different therapies, most of which claimed to help but were very expensive, and we had no idea which way to turn for the best. At least, I thought, Angelo has a bigger brother to help look after him when he grows up a bit more. Even at this time I had convinced myself that Patrick would eventually grow out of his own problems.

      I knew Angelo was still the same Angelo we knew and loved, but I found myself observing his strange behaviour more and more. In fact, I frequently spent ages just staring at him. He would often just spin himself around and around, and was, seemingly, a happy boy, although his moods were interspersed with tantrums. Patrick had tried to interact with him in his own way, blowing bubbles for him and playing on the seesaw, even reciting nursery rhymes coupled with clapping at the end of each rhyme.

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