Not Stupid. Anna Kennedy

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СКАЧАТЬ hated it if I left him, whether at home or at the nursery, and, even if I was going to the toilet, he would want to come with me. Patrick didn’t want me to go to work and, at night, he would get out of bed to check I was still in the house.

      I had assumed that his behaviour had been down to all the problems associated with when he was a special-care baby, but we were eventually advised to take him to Hillingdon Hospital to meet with the consultant paediatrician who, unbeknown to us at the time, had already diagnosed him with Asperger Syndrome. The paediatrician then advised us to go as a family to see a psychotherapist, Mrs Porter, at the Child, Family and Adolescent Consultation Service, where children can get access to one-to-one or group therapy. We assumed this was because of Patrick’s screaming sessions at school, but this was not the case: the wheels had been set in motion regarding Patrick’s diagnosis of Asperger Syndrome. It’s just that no one at the hospital had seen fit to tell us!

      Mrs Porter noted that Patrick would benefit from individual psychotherapy and, as a result, we returned to see her on a weekly basis. Patrick made good use of these sessions, gradually becoming more talkative and expressing his ideas on paper, either through drawing or writing. He still reacted poorly when subjected to change or stress, but Mrs Porter reckoned he was responding well to clear limits placed before him.

      In fact, Patrick’s self-esteem benefited from these sessions. He felt more grown up when he was alone with Mrs Porter, although at times he was unsure who should be in charge of the sessions – an adult or himself. As time passed, she changed the sessions by moving into another room, a change that affected Patrick’s progress quite significantly, as his play immediately regressed to become repetitive and stereotyped.

      Mrs Porter pointed out that Patrick would continue to require psychotherapy in life to ensure he would be aware of clear and safe boundaries in all situations to enable him to function successfully. The psychotherapy sessions were clearly helpful to him but, one day, when Angelo was two-and-a-half years old, Mrs Porter said, ‘I think you need to have Angelo diagnosed by the consultant paediatrician.’

      ‘What do you mean?’

      ‘I think he may possibly have autism.’

      I gripped the sides of my chair. What a horrible-sounding word. ‘What’s that?’ I asked. The only thing I vaguely thought I knew about the condition was what I had seen in the 1988 movie Rain Main, starring Dustin Hoffman. I noticed the shock on Sean’s face and watched as his shoulders dropped. It was as if a hundred-pound weight had been placed on each of them. As for me, when the penny dropped, it was as if the world had exploded, but there was no noise.

      On the way home, all I could think was, Oh, no, more barriers and hurdles to overcome. Autistic tendencies? What’s that? Why us?

      Nor was I looking forward to breaking the news to our family. Of course, we knew the boys were no different from the way they were before this bombshell, but we realised, given this knowledge, that our expectations for them would undoubtedly change.

      We were not given any information other than that there may be a support group in our borough but, even then, no one at the Child, Family and Adolescent Consultation Service seemed too sure. Autism was hardly explained to us at 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. СКАЧАТЬ