You Only Live Once
hates the sound of presents being ripped open. And while he has become much more affectionate, he doesn’t like being around large groups of people. He is perfectly happy playing on his own.
    His Septo-optic Dysplasia can also affect his behaviour if his medication is out of balance. If he is slightly unwell, we have to weigh up whether to give him more cortisol and constantly ask ourselves whether that is affecting his behaviour. There are so many things to consider with Harvey. But when his health is fine, and he’s naughty, well . . . he’s just being a typical naughty boy and you can’t make special allowances. For example, he’s got several keyboards and one day he asked me for his blue one. ‘Harvey find it,’ I told him. But he said, ‘No, Mummy find it.’ And when I said that I didn’t know where it was, he began making the moaning sound which is usually the signal that he is getting angry and is about to kick off. But I was firm and said again, ‘Harvey find it.’ And he went off and found it. I think he knew where it was all along, he just wanted me to get it!
    He can also be quite cheeky. On one occasion I was putting him to bed and he said, ‘Cuddles in bed.’
    ‘In a minute,’ I replied, as Princess had just called out to me. Harvey started moaning, so I left him to calm down on his own. The next thing I knew he had unzipped the large bag of colourful plastic balls which he has in his room, and had thrown them over the balcony so they had rolled all over the hall. When I asked him what he was doing he ran back into his room, knowing perfectly well that he’d done something wrong. But actually, although I told him not to do it again, I didn’t mind him doing it as it was more cheeky than naughty, and showed the fun side to his character.
    I love Harvey so much. To me he’s unique because of his condition and I can honestly say that I wouldn’t want him to be any different. But having a child with special needs can make family life a challenge. Harvey does need one-to-one attention and that can be difficult when you’ve got other children because they need your attention as well. If we’re in the car together and I talk to Junior or Princess, Harvey will start to get agitated because he wants to know that he has all my attention. He’ll always want to do the ‘And then?’ game or get you to finish his words. My mum could see that I needed to be able to have some time with Junior and Princess, so I could do some activities with them, and so she organised for Harvey to go to a respite centre at the YMCA on Saturday mornings, along with other children with special needs. Initially, I was resistant to this. I would always say, ‘We’re a family, and we should do things together.’ But the problem is, if we go out as a family, it always becomes all about Harvey and that isn’t always fair on Princess and Junior. Once the respite care was arranged, it meant I could take them riding at the weekend. As for taking all three children out together on my own, that just isn’t possible. For instance, on Christmas Eve 2007 I wanted to go to the supermarket to pick up some last-minute shopping, and thought I would be able to manage them all. But by the time I got there, they were all playing up. At that stage I couldn’t always rely on Harvey to walk, so I had to have the wheelchair with me as back-up and thought, ‘How the hell am I going to push a wheelchair and a trolley? I was going to insist Harvey walked, and promise him a cake as a reward, but then I thought, ‘I just don’t think I can do it. Harvey is so unpredictable. He could be in a good mood getting into the car, but then I could ask him to put his shoes back on, which he doesn’t like, and he’ll have a tantrum, and I’ll be stuffed, and I won’t even be able to get him out of the car!’ So I ended up forgetting the supermarket trip.
    Being a working mum, I sometimes have to take the children with me to work. A business meeting

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