Love, Lipstick and Lies (14 page)

I have lost count of how many TVs Harvey has destroyed when he’s had a temper tantrum and thrown something at them, even when they have been protected with a Perspex screen. Now I’ve had to put even thicker screens up. The worry is that he will hurt himself or whoever is near him, which is why he is always supervised and never left alone with Junior and Princess.

We try and anticipate when he’s going to have a tantrum and deal with it before it happens, but we can’t always do that because sometimes it happens too quickly. At other times there are warning signs. Harvey’s expression will change and his eyes roll more than usual and he begins making a moaning noise. If we can catch him at that point we can say, ‘No, Harvey, stop making that funny noise. If you don’t there will be no cake and you won’t get your treat on Friday.’ We are trying to show him that there will be consequences to his behaviour.

Usually that will do the trick, he’ll say ‘Sorry’, and there won’t be an outburst.

‘Good boy!’ we’ll reply. He is motivated by food and praise, which almost always win him over. But we
have to intervene quickly. Harvey gets really upset after he’s had a tantrum because I think it wears him out emotionally and he doesn’t like being told off.

Because he needs one-to-one attention and can dominate family life it is sometimes hard on Junior and Princess. I am sure that is the experience of many families with a disabled child. But it has definitely got easier now. They are still wary of him at times, although they do interact far more with him as they have grown older and Harvey has got better at communicating.

They can have fun together, playing on the trampoline outside for instance, or drawing, or we all watch films together in the cinema room. Junior, who is a born performer, has discovered a useful accompanist as Harvey will play the keyboard while Junior sings a Bruno Mars song.

On school days Princess and Harvey get up at the same time and have breakfast together, which is such a great development – sleepy head Junior is usually still zizzing away in bed. I used to lock Harvey’s bedroom door at night to make sure he was safe, and didn’t wander downstairs in the middle of the night, but I don’t have to do that any more. Princess and Junior used to worry that if Harvey’s door was open he might come into their rooms, but they’re not concerned now they know how to talk to him. The other morning I could hear Princess telling him to go back to his room because he was eating toast before Lizzie the nanny arrived and he is supposed to wait for her. Off Harvey went.

Both Princess and Junior copy the way I tell Harvey to do something or not do something, as if they are adopting my role. For instance, Princess will say, ‘Come on, Harvey, eat your tea.’ Sometimes that works and he’ll reply, ‘Okay, Princess.’ At other times he’ll put his foot down and say, ‘No, Princess’ or ‘No, Junior, only Mummy [can tell me this].’ It works both ways because if I ever have to tell Princess and Junior off and shout out, ‘Kids! Will you stop it!’ you’ll hear Harvey repeating it a few minutes later, imitating my voice exactly, so it saves me having to say it again!

We all have to be incredibly patient with Harvey. You can never rush him. For example, if we are running late at any time, we have to go at his pace and accept that there will be a delay. In the past we had a board with pictures on it so we could show Harvey exactly what was happening that day, but he’s progressed beyond that and we don’t have to rely on pictures any more. Instead, in the evening, we always run through what he is doing the following day. If we want him to finish an activity we have to say, ‘Right, Harvey, we are going to count down from ten and when we get to one we are going to move on to something else. Is that okay?’ Everything has to be negotiated and explained. We have all discovered reserves of patience that we didn’t know we had! Harvey also knows Makaton, which uses signs and symbols and helps people communicate straightaway when they can’t get the words out. So he can sign things like, I feel angry. And we can quickly respond.

His autism also means that he gets obsessed with things. At the moment it’s frogs and has been for a few years now; he also loves drawing Christmas trees. He’ll spend hours drawing colourful pictures of frogs and saying, ‘Ribbit, Ribbit,’ as he does so. His entire bedroom is decorated with pictures of frogs, and I’ve lost count of the number of toy frogs he has. Kieran bought him some frogs for his eleventh birthday and Harvey was over the moon when he saw them.

Recently I had my London flat redecorated and had all the walls painted white. Without me knowing, Harvey drew the biggest frog ever on his bedroom wall in crayons. It was quite a sight, I can tell you. He told me that he wanted his room in London to be exactly the same as the one in Sussex, where there are frogs painted all over the walls. Can you imagine if someone in the family had a phobia about frogs! Fortunately none of us do, and so we embrace Harvey’s frog obsession. Then again, you never know when he might become obsessed with something else, and that’s just part of his autism.

In 2013 we discovered that he had two more conditions – Attention Deficit Disorder (ADHD) and Oppositional Defiance Disorder (ODD). ADHD affects his ability to concentrate and focus, and ODD means he can become very aggressive. If he doesn’t want to do something, or something upsets him, he will immediately bang his head against the wall or the floor or throw the nearest object to hand. It is this behaviour that has always
held back his progress. It has affected his ability to learn, but if his aggression can be controlled and his concentration span can be increased, then it will open up new possibilities for him.

It took over a year and a half for the doctors to do their research into Harvey and come up with the latest diagnosis. They want to target the ADHD first. Of course this means yet more medication when he is already on so much. This time they started him off on a low dose of Ritalin. It is always a delicate balancing act giving Harvey a new drug, as the doctors have to ensure that it doesn’t affect the medication he’s already on. At home we have to keep a daily record of his dosages, along with what he’s had to eat and drink and what his weight is, so we have all the information at our fingertips for every hospital visit and also if he were suddenly to become ill.

Ritalin can also be an appetite suppressant, which could be beneficial as one of Harvey’s other conditions is Prader-Willi. This means he can’t control his appetite; has no idea at all when he is full. If, for example, we left a chocolate cake in front of him, and didn’t stop him, he could easily eat it all. We have had to move all food out of his reach or move the fridge to a room where we can lock the door, otherwise Harvey would raid it constantly. In the past he has taken frozen pizzas and cakes out of the freezer and hidden them in the cinema room, so that in the night he could sneak down and eat them. Well, not any more! The only thing he can reach
now are the vegetables and salad, and so far we haven’t found any stashes of broccoli …

I wasn’t sure if I could see a change in him at first from the Ritalin, but my mum was convinced that it was having an effect: that he was concentrating more as well as talking and becoming better at expressing his feelings. Hopefully it will mean fewer tantrums in the future as he will be able to tell us how he feels. Lately we have noticed that he has been able to say why he got upset and kicked off; usually it will have been because of noise.

At the same time Harvey is definitely becoming more independent. He is able to dress himself in the mornings for school, go downstairs and make his own breakfast, brush his teeth, tidy his bedroom, strip his bedclothes if he has wet the bed at night – that’s to do with the Diabetes insipidus which means his body can’t regulate fluids. Above all he enjoys doing things for himself, which is a huge step forward.

He is such a character and is turning out to be a really good mimic. He can take me off perfectly. ‘Hee-ey, hello!’ he’ll say to visitors. ‘Oh my God! So sorry I’m late! The traffic … what a nightmare!’ He also did a very good impersonation of Leo and kept saying, ‘
Fantastico
!’ Recently he has become obsessed with filming and recording all the conversations that he hears around him in the house or in the car. I keep having to say, ‘Harvey! Delete that!’ Can you imagine having a recording of everything that is said in your house! All
kids go through stages where they know what swear words are and they like saying them to shock, and Harvey is just the same. We can be sitting at the table eating and he will exclaim, ‘This is shit, isn’t it!’ And I’ll reply, ‘What did Harvey say?’

And he’ll say, ‘Oh, goodness, gracious me!’

And I’ll say, ‘Hmm, I thought that’s what you said!’

The latest thing he likes saying when we’re out in public, in a loud voice, is: ‘Mummy is Katie Price!’ And I swear he does it to be cheeky and to get a reaction from me. I am so embarrassed when he comes out with that!

I’m constantly amazed by how much progress Harvey has made. I used to worry that he would never be able to tell us how he feels or what he wants, that he would be lost in his own world, but he can communicate so much better than he used to. If he doesn’t want to do something he can tell you, if he doesn’t feel well he can tell you – though you have to watch that he isn’t faking it! He talks all the time now and he wants conversations, which is something he wouldn’t have wanted a year or so ago. He will ask, ‘When am I going to school? What’s happening on Monday?’ And although it is still all about his routines, his conversational range seems to be broadening. He can also come out with completely random things and one of his favourite sayings is, ‘When can I go in the racing car all the way to Tesco’s on a windy day and go to Andrew’s?’ I’ve no idea where he’s got that from! And he will often ask, ‘When are we going on the white boat?’ Again, I’ve no idea why.

In the car, when my mum is taking him to school and she is looking out of the window, he will grab her hand and say, ‘No, Nan! Look at me, talk to me!’ He has a strong character and always wants his own way … I wonder who he gets that from? He’ll say, ‘Oh, look at the traffic! I must ring the school to say that we’re going to be late.’ And my mum will call up the school and Harvey will speak to the secretary. He can definitely get his own way – though not with me, I have to say – with other people. Every morning my mum has to record him playing the keyboard and he won’t go to school until he is happy that she has the right recording. His latest favourite is Lady Gaga.

In April 2013 he started at a new school in Wimbledon. His old school, Dorton House, where he had been since he was a baby, was being closed down. Dorton had been brilliant for Harvey and the teachers had brought him on so well, I’ve nothing but praise for them. It was an extremely stressful time when we found out that the school was closing as we didn’t yet have a place somewhere else for him. We got together with the other parents at Dorton and even tried to start up our own Free School for children with special needs, but the Government turned down the proposal on the grounds that there weren’t enough pupils. I think they were wrong because there is definitely a need out there.

One of the big things about having a disabled child is that you feel you have to fight for everything for them, every step of the way. We had to
fight for the correct support for Harvey, for his statement of educational needs. We had to go to a tribunal because I didn’t want him put in a rubbish school. With any child you want to give them the best start you can in life, and just because a child has disabilities that’s no excuse for anyone to think that their education doesn’t matter; that they won’t be able to achieve anything anyway. That’s so wrong! We have proved with Harvey that the more stimulation we give him, and the more we push him, the further he progresses.

The new school looks as if it is going to be fantastic for him. It’s bigger than his old one, with 145 children with special needs. Harvey is one of nine in his class and he might not always have one-to-one support as the teachers don’t think he will need it – I never thought that would happen. There is always a great atmosphere in the school, and it feels really lively and friendly. I think the new environment will bring Harvey on even more. He has made such great progress there and continues to learn new things. He seems to have a real hunger for learning.

Like any little boy he is very active. He loves swimming and trampolining; plays football using a ball with a bell in it. He can ride a three-wheeler bike, but you have to go with him as he has absolutely no sense of danger because he can’t see what’s coming. ‘Turn now, Harvey!’ you have to shout, to stop him from riding into a fence, ditch, or whatever! He also absolutely loves going on the quad bike, he’s a complete speed freak. Just
like me, I guess. You can have so much fun with him. And now I feel that I can take him anywhere I go. We can stay at friends’ houses for weekends, which I never used to do. I would worry that the change in routine would be too much for him and that it wouldn’t be relaxing for anyone else. In the morning, if he wakes up too early and starts making all his frog noises, I will say, ‘Harvey, come to bed and have a cuddle before we have breakfast.’ And he understands that he can’t get up yet, and will cuddle up with me.

There was a time when we had to take the wheelchair, or black chair as Harvey called it, out with us everywhere because he would hardly walk any distance, but not any more. So, for instance, he comes shopping with me, we go to the cinema and we go bowling. If we go shopping at Churchill Square in Brighton, we have to finish up by going to Costa where he always has to have a sandwich and a cake. He will eat the sandwich and then ask the waitress to put the cake in a bag so he can bring it home. He puts it on the bedside table, and won’t eat it until the morning. Such self-control! I don’t know if I could do that. A lot of his treats are about food. It’s part of his condition. He always wants to know when he is getting his next meal or snack.

During the week he has a strict routine because of school so at the weekend I like us to be more relaxed and let him do what he wants. I don’t have a nanny then, though I do have to watch him carefully and it’s usually because of food. I can suddenly discover that
he’s hidden a bag of sweets somewhere. I’ll find him licking his lips and ask him what he’s doing and he’ll pretend to be all innocent. And I love that because it shows he’s just like any other little boy. He has a cheeky side to him as well, especially when it’s to do with not going to school. On Sunday night he’ll say, ‘Mummy, Harvey’s got a poorly belly. You must call the doctor and call the school.’ Monday mornings are especially difficult.