Authors: Anna Kennedy
To our disappointment, our neighbour packed up childminding. We found another lady to take over but, after unexpectedly returning early to pick him up on a couple of occasions, we had not been impressed to discover that she had left Patrick outside the front door – which had been shut each time – and that he had been sick, unnoticed, in his buggy.
I took the decision to check Patrick in to an independent
nursery at St Mary’s School in Hillingdon but, although I was convinced this would be the best move for him, he had other ideas. To say he hated the experience would be an understatement. Whenever I left him there in the mornings he would scream and scream and scream. He wouldn’t play with the other children, preferring to sit by himself in a corner of the room. He wasn’t getting on at all well. I was, naturally, worried but I put his behaviour down to the facts that he had been so poorly for so long, and that he had become so used to my being with him almost all of the time.
In 1992, when Patrick was three, I became pregnant again. Once again I was diagnosed with pre-eclampsia, this time after 31 weeks, and was not impressed when I was informed it was rare to suffer it twice unless I now had a different partner! My condition meant I had to stay in hospital for nine weeks.
Because of this, Patrick had to stay with my mum in Middlesbrough. At first he would speak to me on the telephone but, after a while, he refused to do so, probably because he thought I had deserted him.
Because of my history, the doctors wanted to keep a close eye on me but, after being in hospital for four weeks and seeing other mothers come in, having their babies and leaving, I soon became pretty fed up. Eventually, I was allowed to go home at the weekends, but only on the condition I return to sleep at the hospital each night. At least that gave me something to look forward to.
When I got to 40 weeks, the consultant informed me he was about to go on holiday and that he would see me in two weeks’
time on his return. He told me my baby would be delivered by Caesarean section but he would like me to experience labour pains because I would feel ‘cheated as a woman’ if I didn’t.
Only a man could say that!
After returning from his holiday the consultant was informed I had not experienced any labour pains at all. As a result, on 21 January 1993, he took the decision to deliver my baby by Caesarean section straightaway.
I’d had to have an epidural, which was a weird feeling. Sean was supposed to be present at the birth but he chickened out, claiming there wasn’t a gown big enough for him. Instead, he stood outside, looking through one of the windows and giving me the occasional thumbs-up sign for encouragement.
There was no pain at the time of birth, just a tugging feeling as they pulled Angelo out from me. When he was born Angelo had the cord around his neck – and red hair! He also had an infection in one of his eyes, but at least he weighed 6 pounds (2.7 kilos), a much healthier birth weight than Patrick.
At first, Sean and I were pleased to believe everything would be more ‘normal’ with Angelo. After we brought him home, Patrick returned from my Mum’s. He went to run towards me to give me a hug but then saw Angelo in the Moses basket and refused to come either to me or anywhere near his newborn brother. He also declined to go anywhere near Sean. I suppose, in Patrick’s eyes, we’d replaced him with a new baby. However, I’m a very cuddly, kissy person and, over the next few days, I was able to reassure Patrick that we still loved him just as much as we ever had.
After a few months Coral and Sean’s Aunt Pam came with me and the boys to spend a brief holiday in a Pontin’s holiday camp
in Jersey. Sean didn’t come. He absolutely hates holidays, but at least it was a much-needed break – particularly as far as Patrick was concerned because it meant he didn’t have to be dragged screaming into the nursery for a while.
Everything seemed to be going well during the holiday and I was pleased to note that Angelo was passing all the milestones any parent would expect from their child as he or she grows up. In fact, we have many photographs taken during this holiday showing Angelo smiling and looking at the camera with loads of eye contact. As far as I was concerned, Angelo was a particularly good little baby who was happy just as long as he was fed and kept comfortable.
When Angelo was 18 months old I took him to have his measles, mumps and rubella (MMR) injection. From this point on, his health would become a major concern to us. During his belated christening, history seemed to be repeating itself when he stopped breathing, as we stood by the altar in the church. Then, suddenly, there was a huge gasp as he got his breath back. I suspected he too was suffering from sleep apnoea.
Later, Angelo came down with a severe ear infection and a very high temperature – so high that we took him to the hospital to be checked out. The infection had become so acute that his ear had filled with green pus. He was given antibiotics but he was allergic to them. As a result his neck began to swell and he developed blotches all over his body. A different antibiotic was administered to correct the problem but he was allergic to that one too and became really ill.
Eventually, the infection subsided but Angelo was now noticeably beginning to act strangely. For a start, he didn’t want
me to touch him and he would stare, fixated, at the patterns on our wallpaper. He would frequently line up a variety of objects in perfectly straight lines across the room and, if you moved any of them even slightly, he would go completely berserk.
He developed a high-pitched scream and boundless energy, and would repeatedly run from one corner of a room to the other – sometimes for hours on end – or he would bash himself against the walls. Other times he would walk around on tiptoes or just stand in a corner for really long periods of time. Worst of all, he wouldn’t let me cuddle him, which I found just heartbreaking. Although Angelo seemed to be a happier child than Patrick, his communication skills were extremely limited, usually no more than one-word demands.
Patrick’s communication skills were difficult nonetheless. In his mind, he had to be in control of a conversation and would be most upset if it didn’t go completely his way. We soon realised he had very little desire to listen to anybody else’s point of view.
His screaming fits each time he was taken to the nursery added to the stress Sean and I were experiencing. In all, Patrick was at the nursery for three years and there wasn’t a single day when he didn’t protest on the way. One day, he even released himself from his car seat and grabbed the steering wheel in an effort to prevent me from taking him there. Distracted, I turned to tell him to get back into his seat, which resulted in my driving into the rear of the car ahead of us. I ended up with whiplash but, fortunately, both Patrick and Angelo were unharmed.
It wasn’t the last time such an incident would occur. Later, on the way to the school, I was distracted by Angelo playing up in
the back seat. It was only a momentary lapse in concentration but it was enough to cause our car to collide with the car in front of us. Our car was very badly damaged but, fortunately, no one was injured and the driver of the other car was very understanding as we exchanged our details.
Nevertheless, I was in quite a state. Once I got home I was nauseous and headachy and just could not stop crying, especially since Sean seemed to be so cross with me. As was, and is often the case, I was relieved that a two-hour keep-fit session that night made me feel a lot better and washed away some of the stress I’d been under.
By the time Patrick was five he had moved on to St Mary’s School from the nursery but his behaviour was still giving cause for concern. He would constantly talk to himself and failed to understand even the most basic of instructions. He adopted a solitary manner of play, being particularly wary of large groups of children, and this became most apparent when he developed an obsession with jigsaws.
He 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.