Not Stupid. Anna Kennedy
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all and we left after being told we would have another appointment in six months’ time. I tried to find out about our local autism support group and was dismayed to discover it had folded because the lady running it could no longer find the time to continue.
After receiving such devastating and life-changing news, we were totally on our own, it seemed, to deal with our problems. After we had attended a specialist centre, Harper House in Radlett, and the Child Development Centre in Hillingdon, it was finally confirmed: Angelo was, indeed, autistic and the next few days in particular saw Sean and me trying our best to come to terms with the situation.
It really hit me when I rang my mother. I just cried and cried, but I knew it wasn’t going to help anyone. With me crying and Sean burying his head in the sand, it seemed the kids were just going to carry on doing what they were doing. Of course, Coral and Mum were very supportive, but with them in Middlesbrough and us miles away in London, they could offer only emotional support and I felt very alone.
Thank God then for ‘Aunty’ Zita, who used to work with me at Sanderson’s, the loveliest woman anyone could ever meet. She really stepped up to the plate and was a wonderful support to us all. She’s a small lady whom I used to pass on the way to work and had ended up giving lifts to. Zita has no family of her own and I guess I became the daughter she never had.
Meanwhile, Angelo seemed to be in a world of his own. I really wished I could get inside his head, just to have some idea of what he was thinking. I remember mentioning this to our GP when I told him about Angelo’s diagnosis but I’m sure he felt I was just being a fussy mother, particularly when he said, ‘Oh, what do you think about that, then? I reckon you must feel your son’s an alien, don’t you? Every time your boys come here, they never sit still and they’re always touching my things.’ Needless to say, I didn’t go back to him any more.
Five days after diagnosis, on Valentine’s Day, we took Angelo to Hillingdon Hospital for a blood test to eliminate the fragile X syndrome, which is a chromosome deficiency. After we had waited for an hour and a half, a nurse attempted to take blood from Angelo, who, by now, had become quite hysterical. The nurse called two of her colleagues to assist her while I held onto Angelo, but even then it took five attempts before they eventually succeeded in getting the required blood sample. At least the blood test revealed that Angelo did not have the syndrome after all.
Later in the day, I visited Grangewood School in Eastcote, which had been recommended to us. This specialist school had a facility for autistic children but, in spite of that, after viewing the school I didn’t think it would be an appropriate place for Angelo. Sean and I were convinced he would be better off going to a mainstream school with one-to-one tutoring. We felt he would have the added stimulus of other ‘normal’ children, which would help him integrate and progress more satisfactorily. I know this sounds cruel, but I did not want Angelo to go to a special school for children with learning difficulties and physical disabilities – I just couldn’t help the way I felt at the time.
The following day a health visitor called round to see us but, surprisingly, she didn’t have any information on autism for us. Instead she gave us an information sheet with names and addresses of help groups and voluntary societies. She remarked at how amazing Sean and I were, in that our marriage had not suffered in spite of all the problems we had already faced over the previous six years with Patrick. She told us she knew problems of such magnitude often split couples up and I remember desperately hoping that our marriage would be strong enough to withstand all the extra pressure it now faced.
After another depressing meeting with Mrs Porter, we learned that Angelo would need lots of help – at least two years of intense psychotherapy – and she stressed the need for us to prevent him from performing all his habitual rituals. By now, I was not feeling too good. I was beginning to feel like a wind-up toy, my brain filled to saturation point, but at least Sean and I had a nice romantic evening at a local pub that night, which made me feel a little better.
A couple of days later, though, the cracks began to appear between Sean and me, when he just stopped talking to me, even though the rest of the family were being supportive. I’d been finding it difficult to concentrate at work but the silence from Sean was even harder to deal with, because he was bottling up his emotions. To my mind, he was in denial, but I really wished we could talk it out between us, that we could work together, not only for our sakes but for Angelo’s.
As a child, I would keep diaries but, after a while, I had stopped doing so. Now I just felt the urge to write my feelings down on paper once again. I began writing each day. I guess it was my way of sharing my problems with someone – even if it was just myself.
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.