Love, Lipstick and Lies (13 page)

When Boyle made a series of sick jokes about the Queen and the Duchess of Cambridge, his entire sketch was cut from
Give it up for Comic Relief
on BBC3. And I thought, So it’s okay to make jokes about people with disabilities but not the Royals? I fought back by making
my documentary,
Standing Up For Harvey.
If Boyle had taken up my invitation to meet him he would have seen that Harvey overcomes more problems before he has his breakfast every day than Boyle would have to in a month of Sundays.

* * *

I believe many people look at Harvey and think he is just a big kid who is blind. They don’t appreciate the full extent of his disabilities. I’ve had a set of cards printed so that, when I see people staring at him, I can simply hand them one. The card says: ‘You’re obviously looking because you’re interested. This is his condition, Septo-Optic Dysplasia, and if you want to donate to a charity that supports children like this then do.’ The details of Vision charity (which works with blind, visually impaired and dyslexic children) are also printed on the card. I have noticed that the stares are worse in posh places like Harrods and Selfridges … and whenever we eat out at a restaurant we get stared at because Harvey is very sensitive to noise and hates the sound of cutlery being clattered, or doors banging, and can easily get upset – and this is especially difficult because he’s obsessed with food. That’s because of one of his other conditions.

Septo-Optic Dysplasia caused his blindness. Besides that, put simply, his brain didn’t develop properly and that is the reason for all his other medical and behavioural problems. He was born with a limited pituitary gland,
which is like the body’s chemical regulator, so is deficient in all the hormones the body needs to help it function. He also has cortisol deficiency, which affects his stress responses and makes it harder for him to fight off illness and cope with shock.

When he suffered horrific burns to his legs in 2006, I was terrified that he would go into shock, that his windpipe would close up so that he wouldn’t be able to breathe, and he would die. An emergency cortisone injection has to be administered to him in such situations. The accident happened on New Year’s Eve when he got into a bath full of scalding hot water. The house was completely baby-proofed, with stair gates and the upstairs doors locked, but that day we were having a party and I can only imagine that one of our guests left the gates open and the doors unlocked, and Harvey, who was obsessed with water, slipped upstairs without anyone seeing. I wasn’t at the house when he had his accident but returned to discover him screaming and thrashing around on my bed in agony. The sight of my son in so much pain is something I will never forget. Thank God he has fully recovered from the accident now.

Harvey also has Prader-Willi syndrome, a genetic disorder that means he is likely to eat to excess and is prone to obesity, and Diabetes Insipidus where he can’t regulate how much he needs to drink and without medication would have a continual thirst. As if that isn’t enough he is also autistic. Recently he was diagnosed
with ADHD (Attention Deficit Disorder) and ODD (Oppositional Defiance Disorder). His autism means he has to follow a strict routine, ADHD means that he finds it hard to concentrate and focus, and ODD makes him aggressive, so all three of those conditions really affect his behaviour.

While Harvey is the most fantastic little boy and I love him very much, it is a constant challenge looking after him. He has to have medication every day, at 7 a.m., 8 a.m., 12.30 p.m., 2 p.m., 4.30 p.m., plus hormone injections at 8 p.m. I am not exaggerating when I say that, without regular medication, Harvey would die. He needs to be supervised all the time, and his condition constantly monitored by us at home and in regular hospital appointments. He has to have regular hospital blood tests to check that all his medication is balanced, and to do this has to have a general anaesthetic where a line is put into his arterial vein so they can take blood every two hours. He is so brave about this, especially since he hates needles, though he is fine with me giving him his hormone injections at night. I find it really upsetting going into theatre with him. I stay by his side while he is given the anaesthetic, I have to be brave for his sake. I hope people understand that when I say Harvey needs specialist nanny care while not at home, this is no dramatic overstatement. It is a simple fact that there has to be someone always on hand who is trained to deal with his many issues.

When Harvey was born he seemed like a perfectly
healthy baby boy. But at his six-week check up the midwife shone a torch into his eyes and commented that he didn’t seem to be following the light. It was a complete bombshell. The doctors told me that my son was blind, that he would never be able to see and would hardly be able to do anything either. Just as I was coming to terms with this, twelve months later he was diagnosed with Septo-Optic Dysplasia. Thank God for my family and their constant support, especially my mum who gave up her job to help me look after him. I must say a few words about my family here.

My mum is my rock. She gets all my emotions and helps me deal with them. I would be lost without her. She is so good with Harvey, and I have always employed fantastic, highly trained nannies to help us.

When it comes to looking after my son, I’ve never looked for sympathy. My attitude has always been that I have to deal with it, get on with it, be strong and give Harvey the best possible life. Of course there are times when I’ve cried, but I know I would be no good at all to Harvey if I wasn’t fighting for him, especially as he only has me to parent him. His dad is Dwight Yorke, the footballer, but he doesn’t play any part in Harvey’s life at all. When I fell pregnant with Harvey, Dwight wouldn’t even admit that he was the father until we both took a DNA test that proved he was.

What has always upset me greatly is when the press or others suggest that Harvey’s disabilities may be my fault in some way. When he was a baby there were suggestions
in the press that I had caused his problems, that I was a bad mother. One newspaper blamed me because I went clubbing when I was pregnant. But for God’s sake! People can still socialise when they are pregnant, and I was only twenty-two! They printed pictures of me coming out of a club, but they never printed the pictures of me driving home afterwards perfectly sober. I’m pregnant with my fourth child as I write this and that all seems like a very long time ago. Now I’m such a homebody I hardly like going out at all. My idea of a good night is watching
The Voice
and
Britain’s Got Talent
. How times have changed for the Pricey …

I’ve often asked the doctors what might have caused Harvey’s condition and they always say that it’s nothing that anyone has done; it is genetic. No one is to blame. But some people still can’t seem to understand that and can be so cruel. Only recently in 2013 Katie Green, some model or other, suggested on a live TV show that Harvey was disabled because she had heard that I had taken drugs when I was pregnant. She has not apologised properly for this so I am taking legal action. And some MP’s son tweeted a vile comment about Harvey being a vegetable. His father is the patron of a brain injury charity, so you would really think that he should know better … It just shows what kind of attitude parents of disabled children, and people with disabilities, are up against. I wish all those people who show such ignorance could spend a day with Harvey and see the reality of looking after a disabled child.

Although we were told at first that Harvey would be blind, in fact he has limited vision. He can see at six metres what a normal child can see at sixty. He can read text in a
size font. He has glasses, which he is supposed to wear, and if he wore them all the time then he would be able to read a smaller font. However, he hates wearing them so he’ll put them on and say, ‘Wow,’ and then take them off a few minutes later. He can use a touch-screen computer, write and draw pictures, and if he needs to see fine detail he has a special glass to help him. His right eye is better than his left, where he has a nystagmus. This means his eye turns in towards the centre, so when he looks at something he has to turn his head and his eye is constantly moving. Imagine how hard it would be to look at something when your eye was constantly making involuntary movements in another direction. It must be so frustrating for him.

At one of his check ups at Moorfields Eye Hospital, we showed his consultant some of Harvey’s drawings and he was really impressed by one of a frog and a rainbow. ‘That’s amazing,’ the consultant said, ‘I would never have expected him to see colours.’

Harvey’s sight is actually the least of his problems. The same consultant told us that if my son didn’t have any of his other disabilities, including the behavioural ones, then he would have been able to lead a full life, have a job and live completely independently. But that
is not going to be possible for Harvey; he will always live with me.

Harvey and I have a very close bond. My mum and his teachers say that everything he does is for Mummy and that he always wants them to tell me how well he has done at school, and to show me his pictures. I think it’s unusual for a child with autism to feel this strong bond with a parent but it’s unbelievably strong in his case, to the point where if ever Harvey is having a tantrum and lashing out, he might hit someone else but he would never hurt me. In the mornings I can’t be the one to get him ready for school because the moment he sees me he would want to spend the day with me and refuse point blank to go to school. So my mum and the nanny are the ones to help get him ready and take him there.

Recently Harvey has started drawing pictures of me. I think he’s captured me pretty well; the big boobs are there, along with the long eye-lashes, pink lips, and the long black hair! He’s captured me pretty well, but he always makes my skin the same colour as his. Is he trying to say that I’ve overdone it on the sunbeds? Cheeky! He also draws a love heart on me and writes ‘Day 22’, which was the name of my fashion range. I have no idea how he knows about that, I guess he must have heard it in conversation.

When we were looking into new schools for him, we went to see one in Exeter that looked amazing and had the most incredible facilities. We wanted to see what was on offer and to get Harvey assessed there. I think it
would have been a brilliant place for him. But it was a boarding school and there was no way I could imagine him living there. It would break my heart, and his. The moment I come home he says, ‘Mummy, shoes off!’ because he knows I’m going somewhere if I’m wearing them. And if I am going out he gets really upset.

His dad has nothing to do with him. There was a time when Dwight would occasionally see him, but that was years ago. He actually spoke to Harvey on his tenth birthday because my mum had phoned his manager to say that he should. I think Dwight was gob-smacked when Harvey said to him, ‘So when am I seeing you?’

I texted Dwight to ask him if he wanted to see Harvey, although he seemed to be in no particular hurry. I thought that, while there was no urgency as such, the sooner he started seeing his son the better.

We ended up arranging to meet at a restaurant in Manchester in November 2012, to discuss the matter. We sat at the bar and didn’t eat. It wasn’t a friendly meeting. Dwight didn’t smile the whole time I was there. He accused me of stopping him from seeing his son, which I absolutely never have. I always wanted him to see Harvey regularly. It’s important for a boy to have a relationship with his father.

Dwight’s attitude made me really angry. ‘I’m not sitting here to be bollocked by you!’ I shot back at him. ‘I’m sitting here because you have a son … a son you could get on with and who you could see at weekends. Are you interested?’

‘I’ll have to think about it,’ was the reply. ‘And if I do decide to see him it will be on my terms, not yours or your mum’s. And I only want to deal with you.’

Dwight gave me such a hard time that I felt like standing up and saying, ‘Fuck you!’ Why was he being like this? It was his son we were talking about! I suppose I should have been used to it, as he had hardly been involved in Harvey’s life to date, but I still felt hurt for my son. I’m the only family Harvey has got, along with my mum, dad, sister and brother, there’s no one else.

I didn’t hear from Dwight afterwards. It’s such a shame. All I can say is that he is missing out on a very special little boy. Personally I think he is scared of seeing Harvey because he doesn’t know how to deal with him. And while I can understand that, I still don’t get why he doesn’t want to see his own child. I could help him connect with Harvey and there would always be a specially trained nanny there anyway. The door is always open to Dwight and his family, so long as they realise that it would have to be a regular commitment, not simply random visits when it suited them. It wouldn’t be fair on Harvey to settle for anything less. Dwight should try. He would get so much love in return.

* * *

One of the hardest things about looking after Harvey is dealing with his autism. Everything has to follow a strict routine or it can send him into a total tailspin. And by that I mean he can kick off with a massive temper
tantrum, where he will lash out, head butt the wall and floor, and throw things. Recently he smashed the glass door of my oven because I didn’t do the usual thing of clicking my nails on the kitchen door before I walked in. He pulled open the oven door and slammed it shut, and the glass shattered and fell out.