You Only Live Once (4 page)

Later, I was thrilled when
Pushed to the Limit
went to number one in the bestsellers list. I had been anxious about it. It was the third volume of autobiography I had written and it dealt with some tough and emotional issues, in particular my battle with post-natal depression and the strain this had put on my marriage. But I hoped it would help other women who’d suffered in the same way to realise that they weren’t alone. That they could get help and get through it, just as I had.

I then went on a nationwide book tour and did a number of signings. As always it was great meeting my fans. A special highlight for me was when I met a mum whose son had the same condition as Harvey. As well as meeting my fans on tour, I get a lot of letters and messages from fans on my website. Some of them have really tragic stories to tell about their experiences of looking after a disabled child, and they say that I inspire them and have helped them with the problems they face. I feel quite overwhelmed when people say that, but I suppose it’s because I’m in the public eye and have always been open about what it’s like being a mum to Harvey, and how much I love him. I’ve never tried to hide him away. I don’t ask for sympathy. People can see that whatever life has thrown at me, I have coped with it and got on with it. And they can also see that I’ve come from nothing and have made something of myself.

CHAPTER FIVE

HARVEY

In November 2007 I stared in disbelief at the picture of my lovely son which
Heat
magazine had made into a sticker with a slogan reading, ‘Help, Harvey wants to eat me!’ The magazine was openly mocking Harvey for his weight, which was caused by his medical condition. It seemed the lowest of the low to blatantly mock my disabled son. Take the piss out of me, but never my child. That is crossing a line that should not be crossed. How could anyone think that a sticker like that was funny? I was deeply shocked and upset.

I think
Heat
must have realised pretty quickly that they had made a terrible error of judgement as even before we got the Press Complaints Commission involved and threatened to take the magazine to court, they apologised unreservedly and made a donation to the Vision Charity, of which I am a patron, which raises money for blind and visually impaired children. Apparently the magazine’s internet forums had been flooded with complaints from readers about the Harvey sticker, and the Press Complaints Commission also received a large number of complaints about it.

A month later I agreed to do an interview on
GMTV
with Phillip Schofield and Fern Britton and to take Harvey with me. I was so proud of how much progress Harvey had made. I didn’t want to show him off and make him perform in some cringe-inducing way; I just wanted people to see how much he had come on. I’ve done so many TV interviews but this was the one I was most nervous about because I was not completely in control . . . I can’t say it was an easy experience! Harvey was very well behaved while we were on air, apart from throwing his stick and Phil having to retrieve it from behind the sofa. It was getting him there which was the problem. He had a tantrum in the car about putting his shoes on. He always likes taking them off in the car and is never keen on putting them back on. As we walked along the corridor to the studio, he sat down at one point and refused to move. And since he weighed around eight stone then, he was a force to be reckoned with! But I’m so glad we did the interview, for the sake of all those other mums who are struggling to bring up a disabled child.

Phil asked me why I wanted to come on
GMTV
with Harvey and I replied that my reality series could never really show just how hard life with Harvey can be as it has to be edited, while this appearance was live. Harvey can only ever be himself and I knew the viewers would get a better understanding of what that meant from a live interview. I also told Phil that I wanted to show that you shouldn’t be ashamed of having a disabled child; that to me living with Harvey is normal. I love him as I love all my children; he is so special to me and I wouldn’t change him. Above all, I wanted to prove that doctors aren’t always right.

When Harvey was born we were told he would never see and that he would hardly be able to do anything. His prospects seemed really bleak. But I refused to believe that and, helped by my mum and by Harvey’s specialist teachers, worked hard to provide him with the stimulation he needed to develop. And the older Harvey has become, got the more he has developed and the richer his life has become. For a start, although he is visually impaired, he can see, especially out of his left eye, and possibly sees a lot more than we realise. He recognises family and friends when they come into a room, and if, for instance, I walk in and ask him what colour t-shirt I am wearing, he will be able to tell me. On his regular car journey to school he knows all the landmarks.

He is also getting on really well at school. Harvey attends a specialised school for the blind and they are fantastic. We go and watch all the children at sports days and concerts, which makes me really proud. He now knows all his colours and shapes. He can hold a pen and draw, and write the letter ‘H’ for his name, and if you show him the alphabet he knows all the letters and numbers. He works on touch-screen computers and still puts me to shame with his ability to use the computer, even though I keep saying that I must get more computer-literate! He can switch on the TV and DVD player when he wants to watch something, and he will look through his DVD collection and be able to choose which one he wants to watch. He loves counting and showing off what he knows. When, for example, I make his toast for breakfast and cut it into squares, he will look at it on the plate and say, ‘1,2,3,4 squares, good counting,’ to himself before eating it.

He has music therapy at school, which he loves. Music is really important to him. He particularly enjoys playing on his keyboard. He has also become much more active, which has helped control his weight. He goes horse riding, swimming, and uses the trampoline. He loves running on the treadmill, at school and at home, and particularly likes the assault course they have set up at school. He still has a wheelchair but wants to go in it less and less, preferring to walk, which is a brilliant development.

When he was younger he had a real issue with eating and only wanted things that felt hard to the touch, like toast or chicken in breadcrumbs, and it was a constant battle to get him to eat healthily. But now he eats anything and always has healthy food. The downside is that I think he might have Prader-Willi Syndrome, which makes a sufferer eat compulsively. He doesn’t know when he’s full, and could easily carry on eating. For instance, if you were to put a loaf of bread or a chocolate cake in front of him – not that I would! – he’d eat it all.

The older he’s got, the more affectionate he’s become. There was a time when he didn’t seem to want to be cuddled or hugged, and would give you a hug only if you asked. But now he’s really affectionate. He’s grown so tall and heavy that I can’t lift him any more, and when he sits on my lap to have a cuddle he practically smothers me! He loves me cuddling him when I say goodnight to him, and especially likes me to massage his head and shoulders when he’s about to go to sleep. He still likes massage cream being rubbed on his leg where he suffered the burn injury, even though it has completely healed. The doctors were really pleased with the outcome and Harvey doesn’t need to go back to the hospital for any more checks for that.

Harvey will say, ‘Mummy nails, itchy scratchy,’ to get me to massage his leg. He’s also obsessed with my boobs and loves pointing at them and saying, ‘Boobies! One! Two!’ You’ve got to smile . . . I try to involve him as much as possible in all aspects of family life, so for instance when I cook a roast dinner, Harvey likes to help. I’ll chop up the carrots and he will put them in the saucepan. He’s got a certain chair he likes to sit on at the table. We call it the King chair.

For months after suffering the burn Harvey was terrified of having a bath. I would have to run the cold tap and let him check it was cold before he would get in. Throughout his bath I would have to leave the cold tap running, so he would know there was nothing to be afraid of. But fortunately he has got over that fear; it helped that during the summer of 2008 we spent a lot of time in Cyprus and Harvey loved swimming in the pool there. Now he is obsessed with cold water! I will run him a warm bath, and he likes me to fill a bottle with cold water and then pour it over him while he giggles! He especially loves having a bath in my bathroom. If I put my bubble bath in he will lie back in complete contentment. I sometimes think he would live in the water all day if he could!

As he has Septo-optic Dysplasia, along with his visual impairment he is deficient in all the hormones the body needs to function healthily. He also has cortisol deficiency, which affects his stress responses and makes it harder for him to fight off illness and cope with shock. He has to take medication five times a day, to make his hormone levels normal, and an injection of growth hormones. He has regular hospital check-ups to ensure his medication levels are right. His cortisol deficiency is extremely serious because if he gets ill or has an accident, he needs an extra cortisol injection straight away. Without it, he could potentially have a fit and die. This was one of the reasons why his burn injury was so serious. I can remember begging the paramedics to give him the injection when they arrived to take him to hospital because I feared he could die without it. Even when he was given it, he still had breathing difficulties.

Whenever we go away we always have to prepare in advance, with Great Ormond Street making contact with the nearest hospital to where we’ll be staying so they know exactly what to do if Harvey does become unwell. He’s only partly potty trained; in the day, you do have to keep asking him if he needs to go to the loo. At night he still wears nappies.

Harvey is also on the autistic spectrum which affects his behaviour. It is this possibly more than his medical condition which is the biggest challenge. He is obsessed with his own routine and cannot cope with anything that happens to disrupt it. And by that I mean he can kick off into a massive tantrum, where he will throw himself back, lash out, and potentially hurt himself and anyone else who is near him. Everything, and I mean everything, has to be done in the order he expects, and we have all developed a particular way of talking to Harvey that’s unique to him. It’s like Harvey language. Whenever you want him to do something he will say, ‘And then?’ and you will have to outline each of the things that is going to happen, in precisely the right order. He likes to know the whole scenario of whatever you do. We have a board that we go through at night, which Harvey goes through with us so he knows what he will be doing the next day and where he is going.

For example, he loves Cheerios and likes having them without any milk in a particular bottle of Princess’s, and he likes you saying half the words with him. So I will say, ‘Harvey, do you want some Chee . . .?’

And he will reply ‘. . . rios.’

And I will say, ‘In a . . .’

And he will reply, ‘In a b . . .’

And I will have to say, ‘. . . ottle with a white lid.’ Sometimes I will speed him up by saying it all but he’ll still come back with ‘And then?’ He always wants to know what’s happening next. There is always an ‘And then?’ with Harvey.

I wouldn’t have him any other way. When he is happy he is so fantastic and loving, but his disabilities, especially his autism, mean that to some extent our lives have to revolve round him. For instance, you have to warn him about what you’re going to do every step of the way. If you walk into a room and switch the lights on without warning, he’ll fling himself back and create a scene. But if you say, ‘Harvey, do you want the lights off?’ he’ll stop having a tantrum and say, ‘Yes,’ so then you have to turn the lights off and say, ‘Lights on?’ and he’ll say, ‘Yes,’ and you can switch them on again. You can never rush things around Harvey; everything has to be done at his speed. If he does lash out in temper he has been known to break things, especially TVs. If he doesn’t like what’s on, he gets angry and he will throw the television and break it. He’s very strong. Afterwards he’ll say, ‘Oh, broken,’ not understanding the connection. We have got through quite a few tellies! Now his flat-screen TV has to be mounted on the wall, safely out of reach.

He gets obsessions with different things, too. At the moment he has one about undoing the Velcro on his shoes. And now he’s becoming more independent, he doesn’t want anyone to do it up for him. When you’re running late it can be frustrating, but you really can’t rush him. He wants to be the one in control. Everything has to be done in the order he expects. It’s part of his autism. We have all had to learn strategies and techniques on how best to cope with Harvey’s behaviour. My mum, one of his teachers from his special school and the special needs nannies we employ have all been on a course run by the Autistic Association. Now we have a series of cards with pictures on them that we can show Harvey, so he will know exactly what is going to happen next.

If we’re about to get in the car, he will wait for the doors to be unlocked and then he has to open his first. That’s the way it has to be. When we’re in the car and we go under a bridge he will always say, ‘Over your head, turn around, look over.’ If we come to a roundabout he will say, ‘There’s a circle roundabout.’ He constantly talks like this in the car and you have to give him your full attention, which is sometimes very tough on Princess and Junior. Plus he only ever wants to listen to Usher and if you put anything else on he goes mad! I mean, I like Usher, but I wouldn’t mind listening to something else! When we play music and stories in the car, he sings along and mimics the voices and sounds.

My mum plays a big part in Harvey’s life – I don’t know how I would manage without her. One of the many things she does is to take him to and from school each day, with a driver, and it is a bit like a military operation where Harvey expects everything to be done in the precise order he is expecting. He knows the exact point in the journey when he’s allowed to have his apple. He recognises the landmarks on the journey, and knows when they reach the M25. He can get very upset if they have to change routes for any reason. He’ll say to my mum, ‘Harvey got dressed today’, and then she has to list every single item of clothing that he has put on, and if she forgets any he will almost certainly have a tantrum.

When they arrive at the school, Harvey mentions the three speed bumps they go over and then they always have to park by the yellow bin. If someone is in the way, they will have to wait until they move. Mark, the driver, then has to ask Harvey if he can turn the engine off and there is a particular order Harvey expects things to be done in – even down to my mum waiting for Harvey to unclick her seatbelt! And it’s not over until they have walked him into school, the way he expects, along the yellow path. Once they have arrived at his classroom, he will say, ‘’Bye, Nanny, go in black car,’ close the door, and then my mum is free to go.

It sounds like hard work, and it is, but I suppose we have all got used to it being normal now. It is very difficult coping with Harvey when he has a major tantrum, and it’s only going to get harder as the doctors predict that he will grow to be very tall, quite possibly six foot four. So as well as keeping him in the routine that makes him feel happy and secure, we also try and teach him to control his temper with a range of strategies. Sometimes you can get him to calm down by telling him that he can’t do something he likes. So, for example, that might mean he won’t be allowed to play with his train track, one of his favourite toys, and that can be effective. He will say sorry and calm down. But sometimes he goes beyond the stage where you can reason with him and has to be left to come out of the tantrum by himself. Our main concern is to help him through it, by making sure he doesn’t hurt himself and keeping him safe and secure.