My condition first showed itself through my anxiety over the smallest things. Leaving the house in general was a big deal. I would burst into tears. But doing something like going to get my haircut would turn into a massive experience. I would erupt in a hysterical outburst. It was like the terror someone might feel at having to jump out of an aeroplane. It was that frightening for me.
My mum and dad were always very supportive and tried their best to alleviate my anxiety, but they often found themselves on their own. The understanding of childhood behaviour and its underlying causes was very limited back then.
Our two grandparents – my grandfather on my dad’s side and my grandmother on my mum’s – did not get me at all. They couldn’t begin to understand my problems. They just thought I was being silly.
‘Look at Jason,’ they used to say to me. ‘He’s younger than you and he’s not making a fuss.’
That became a theme. At an early playgroup I was so upset that Jason had to hold my hand the entire time. The assistants were forever saying, ‘Your brother’s younger but he’s looking after you. It should be the other way around.’
I would sit there crying, wanting to go home. I didn’t want to be separated from my mum and I didn’t want to interact with the other kids. I was aware of that from a very early age. I never played with other children. I just couldn’t get it. I didn’t like play, I didn’t like being around strangers, I didn’t like the smell of the building or the other kids being loud. It felt so enclosed: all the other kids screaming, the teaching assistants being near me. I just wanted to be left on my own. It was all too much.
The same went for the children in our street. My mother encouraged me to interact, but I just didn’t like the idea of playing with them.
By the time I went to the nursery where my ordeal with the milk took place, it was the same. I didn’t understand why I had to go to these places. Once there, I was able to calm down, and I grew a little more accepting of my surroundings as long as I was left alone. At playtime I used to sit and put different headbands on, looking in the mirror. The other children did try to involve me, but I preferred my own company. This probably doesn’t sound very nice, but I found from a very early age that other children weren’t the same as me. They didn’t get me and couldn’t understand why I simply didn’t want to talk to them.
I would do anything not to go to nursery. I would deliberately fall down the stairs. My parents would rush to my aid and comfort me, and wonder how such a thing could happen. I always told them it was an accident. My appeals for attention didn’t always have the desired effect, however. I used to stand on drawing pins and embed them into the heel of my foot. My mum would notice me hobbling around and ask what the matter was. When I showed her she scolded me for being so silly. Given that my older sister hadn’t behaved in such a manner, it must have been confusing and distressing for them.
When I started primary school it was a nightmare. I didn’t have any friends and nearly every aspect of it terrified me. It added vast amounts of pressure. I hated school so much because of the teachers’ lack of understanding. School was the worst possible environment for someone with my anxieties. I hated the noise, the smells, the idea of so many people in such a small space. When a teacher showed me the toilets I immediately thought, I can’t use that, something that’s used by all these other people – no way. I developed a phobia of germs and using public toilets that I still suffer from to this day.
When we had to sit on the carpet we always had to sit next to someone – even that made me uncomfortable. I hated eating with everyone at tightly packed tables. Even when I wasn’t hungry they made me eat it all. I didn’t understand why I had to eat if I wasn’t hungry. Why couldn’t I just have something later? Why was everything so regimented, so forced and tense? I spent a long time looking out of the window, planning my escape so meticulously, although I never had the guts to actually try it.
Sometimes, during playtime, the teachers put a movie on, and if it was something I didn’t want to watch, like the Mr Bean film, they made me sit and watch it anyway. I didn’t understand why I couldn’t do something else. I wondered what the point of it all was.
The way my brain worked was not compatible with the way the teachers taught. They hated it when I corrected them on something, and would shout at me. If I didn’t understand something, they would keep repeating themselves but with raised voices.
It didn’t help when a girl flooded the toilet and blamed me. Even though I protested my innocence, nobody believed me, so they made me sit in the corner for hours. I was only six and I felt persecuted. My anxiety hit new heights. Every morning I erupted in violent rages, screaming, lashing out and holding on to doors. The thought of going to school made me so stressed that I was physically sick. My hysterics left me wheezing and out of breath. The doctor referred me to a chest consultant who diagnosed asthma and prescribed me multiple inhalers.
At school I wanted to be on my own. At home, at night time, it was the opposite. I didn’t like being left on my own in the dark and I had trouble sleeping, often lying awake for most of the night. If I did eventually get to sleep, I’d suffer frighteningly real night terrors and wake crying and screaming. Mum took to sleeping with me to help comfort me. Every night before I went to sleep my mum and I clutched hands and she’d say, ‘Hand to hand, together we stand.’ When I couldn’t sleep she’d sing to me until the early hours of the morning.
During the day I used to love carrying Mum’s nightdress around with me because it had her ‘Mammy smell’ on it. I would breathe it in and it would comfort me. If I was having a really stressful night, my dad would take me downstairs and put old drama series like Secret Army or I, Claudius on the television until it was morning. This was especially hard for him, as he would then have to leave to go to work.
Despite their best efforts to soothe me, night time continued to be a particularly challenging time. My mother would routinely have to sleep with me in my bed until I was 16. I sometimes tried to copy her loving gesture. When Jason was still young, about four, he would climb into bed with me when it was time for his afternoon nap. I read to him and smoothed his hair until he went to sleep, just like my mother did for me.
My parents would take my brother and me to my grandfather’s house in nearby Penrhiwceiber once a week for an hour or two, just so they could have some time on their own. My grandfather couldn’t cope with me, though. If I didn’t want to do anything, he made a big deal of it. And on the rare occasion when we spent the night there I would be walking up and down the landing because I couldn’t sleep. He would yell at me, which just made me more anxious.
In the summer we would sometimes go to Porthcawl on the south-Wales coast and rent a caravan. It wouldn’t be relaxing, though, as I had a massive sand phobia. My parents would worry about me the whole time. I would be anxious about going there. They tried to accommodate my brother because he liked doing all the fun stuff, like going to the arcades, while I would stay outside, terrified to go in because of the noise and lights.
Even family days out presented problems. Once, we visited a stately home, where guides showed you round and told you how things would have looked back in the day. The guides wanted to involve the children with costumes and activities, designed to bring the period to life. It was too much for me. I wanted to leave straight away.
If we visited somewhere, more often than not we would have to leave halfway through. My parents tried to calm me down at first, but when they could see I was getting increasingly anxious they realised it was better just to leave. Jason was always understanding of my situation, but Leanne found it harder to accept. Her attitude was similar to that of my grandparents: I was being indulged and my parents needed to be stricter with me. It led to a lot of tension between us.
Life wasn’t always stressful, however. In the summer Mum and Dad would take Jason and me for chips from