Pauline’s son, Patrick James, is 14 and has severe autism. PJ has a mental age of 2, cannot speak and is still in nappies. He attends a special-needs school and is taken out by carers two evenings a week for two-hour outings. Otherwise Pauline is a full-time carer (PJ has virtually no contact with his father, who split up with Pauline when PJ was two). She once briefly contemplated suicide but immediately sought help. She is now on antidepressants and has asked for counselling.
Pauline lives in a three-bedroomed semi-detached house near Manchester with PJ, Richard (her partner of two years) and Rick, her stepson from a previous relationship (Rick and PJ share the same father). For three years, PJ has spent two nights a month at the Mount Carmel, a care home run by a Catholic charity, but the home will close next month. Every year, Pauline spends a week in Spain without PJ; her sister Breda moves in to care for him.
Of the case of Alison and Ryan Davies, Pauline says: “It has happened before and it will happen again. That woman was the same age as me and her son was only two years younger than PJ. I read that Ryan could ride a bike and play football, which PJ has never been able to do. But I know what that poor woman went through. I know how scary it is to have a child that is getting bigger than you, and who you’re going to lose control over. People should know the reality of caring for a child with severe autism. It’s an absolute nightmare that you hope you’ll wake up from, but you never do.”
Here, Pauline describes her life with PJ...
I know it’s a terrible thing to say about your own flesh and blood, but PJ is like a little animal. He doesn’t talk; he grunts. Nine times out of ten, PJ wants to run about wild. He’s very, very hyperactive. He can’t sit still for two minutes. That’s why he’s only 5½ stone (35kg). He’s always jumping up and down, grunting, and he’s bitten his hands so much out of frustration that the skin around his knuckles is dead. He does try to speak, and says “mum mum”. But I know he’ll never say, “I love you mum mum”. If he ever spoke, those would be the few words I’d want to hear.
He knows that I’m his mum and that I love him with a passion. When I say, “Give me a big love (hug)”, he’ll offer me his cheek and cuddle me. He doesn’t know how to kiss properly. When PJ tries to talk to people, he goes right into their face and starts babbling.
The best times are when he smiles and gives me a little bit of eye contact. It gives me so much pleasure because I know that at that moment in time he’s really with us. Otherwise he’s in his own little world. The most upsetting thing is looking at other 14-year-olds and thinking that that should be my PJ, and instead I’m still changing his nappies. It breaks my heart.
He is still a very young baby, so there’s no way he can play outside. I’ve been in the garden and seen a slug in his mouth. He’ll eat anything — worms, grass, mud, slugs. It sounds disgusting but if he could get faeces out of the toilet, he’d eat that. He’d eat the contents of his nappy if I wasn’t watching. When he was younger, he used to smear the stuff in his nappy around the room. We have laminate flooring in his bedroom and plastic covers over the bed. He’s still got a baby gate on his bedroom door at 14, God love him.
When he’s at home, he spends most of his time walking up and down the kitchen, holding a tea towel for comfort. He also likes the music channels on television. He’ll sit on the settee with his legs crossed, shaking his body and nodding. He’s always smiling, always got a grin on his face.
He eats the same food as me but I feed him, otherwise it would go everywhere. He loves Rice Krispies, sausages, trifle — all the foods that kids love. He’d eat a whole trifle by himself if I let him. I like to dress him well — in the same things that other 14-year-olds are wearing, and his brothers buy him nice things like Reebok trainers. The neighbours always tell me what a wonderful job I’m doing. But they don’t know how extra hard it is behind closed doors.
About two years ago, I got really depressed. For a split second, I thought, “If I do something stupid, like take these pills, and die, then PJ will be really well looked after.” But I thought about my other boys. And I’d never have taken PJ with me.
I went to my doctor and told him. He gave me antidepressants. I’ve also arranged to go for counselling. Now, I’m ashamed that I even thought that way. I’m a strong person, but I think there are a lot of women who are not as strong as me. Alison Davies probably wasn’t strong enough to go to her doctor and say, “I feel suicidal”. It’s like admitting defeat, that you can’t look after your own children. I also think parents fear that their children will be taken away from them.
As far as I know, PJ was normal when he was born. He was just starting to talk, at 2, when he got really poorly with bronchitis. He went into intensive care and when he came out, he couldn’t do the same things as before. But I didn’t really know anything was wrong until he was 2½, and the health visitor said that he didn’t have very good eye contact. A paediatrician told me he had mild learning difficulties, and suggested nursery, so that he could be around other children. He didn’t come on.
When he was 3, I went to a group run by parents of children with special needs, and a few of them said PJ was showing the signs of autism. That’s when I realised he was autistic. I knew it in my heart and soul — I just needed someone to tell me. In fact, autism was diagnosed only last year. It needs to be diagnosed by a psychiatrist and we saw one only last year after I kept badgering people about it. He went to special-needs nursery, and then a special-needs school. I have a nephew with learning difficulties; I think the women in my family are carriers of a faulty gene.
As soon as I knew something was wrong with PJ, when he was a baby, I felt like I’d lost him. It was as if someone had handed me back a shell who just looked like him. It was as if the real PJ had died, and here was this strange little person that I’d have for the rest of my life. I was grieving for the perfect baby that I used to have. I still find it very very hard to accept him the way he is. I can’t get my head round it. When it’s your child, it’s devastating. And what have I ever done to deserve this? I feel cheated. I still believe in God but I’m angry with Him because He’s made my PJ suffer. PJ hasn’t received his confirmation or communion. He wouldn’t understand it so it would just be a big show for everyone else and I still feel so angry.
You know what the problem is? Sometimes, I feel like it’s just me and PJ against the world. You get so low. From the minute you open your eyes to the minute you close them, that child is on your mind. You don’t want to lose your patience but your head is pounding. You feel like running out of the house screaming, but you can’t. It’s as if someone’s ripped out my heart. People say, “I don’t know how you do it, Pauline,” but I have to do it. PJ is my son. I think I love him more because I know he depends on me.
PJ’s condition affected my relationship with PJ’s father — it broke us up. We’d been together for five years. I don’t think he could cope, although he’s still in contact with Rick. When I met Richard, he said, “I don’t know if I can cope with this.” I told him, “Thank you for being honest with me.” It’s very hard on him, because he’s not PJ’s dad, but Richard’s so good with him. He won’t change nappies but Richard will mind PJ if I want to pop to the shops. And he’ll give PJ his food.
With Mount Carmel closing, I’ve lost a lifeline. When PJ was away I would light candles, have a bubble bath and just chill. I’m told that he’ll probably get a place somewhere else. I’ve noticed that social services provision has improved as PJ has got older, and his carers are brilliant. If PJ had Down’s syndrome, everyone would feel sorry for him. But when he starts playing up, people see him screaming at the top of his lungs and think, “Why can’ t she control her own kid?” People look really, really shocked. I can’t take him shopping, and he misses out on his cousins’ birthday parties because he can’t cope with crowds. He can’t visit Santa at Christmas.
And now it’s such a shock to see him turning into a young man. He’s got spots, and I shaved him for the first time two weeks ago. I cried. I have to wash him, and it upsets me to see him in the shower. Soon he’ll be getting sexual urges, and that worries me big time. Puberty frightens the life out of any mother, and it scares me because I won’t be in control. My baby is a young man now, and soon he’s going to be bigger than me. His brother’s 6ft tall.
He’s very placid now but what if he turned violent? I worry about what will happen when I die. I hope that he’ll reach 21 before that happens, and he can move into sheltered accommodation with someone else his own age. Even though Rick and Keith love PJ and worship the ground he walks on, I don’t want either of them to look after him out of duty. I don’t want their lives ruined.
I’d like to meet other parents in Manchester in the same position. Just someone to have a cup of tea with, or whatever. It would have helped so much if, when PJ was young, there was somewhere I could have gone and said, “Do you know what? PJ ate what was in his nappy.” And someone else would say, “Oh, my kid did that last week.” People need to know that they’re not the only ones with severely autistic children.
Parents wishing to contact Pauline can write to her c/o times2, 1 Pennington Street, London E98 1TT.
National Autistic Society 0845 0704004 www.autism.org.uk
Mind 0845 7660163 www.mind.org.uk
PJ's daily routine
6.30-7am PJ gets up. Pauline showers him if his nappy has leaked — “nine times out of ten”, she says — and changes bedding. Rice Krispies plus 20mg atomoxetine, which calms hyperactivity. Nappy change and second shower, if needed. Pauline dresses PJ in school uniform and applies cream for eczema. PJ runs around to some music. Toilet and nappy change.
8.30am Taxi arrives to take PJ to school. He is accompanied by a carer. “PJ loves going to school,” Pauline says.
3.45pm PJ returns. Has orange juice and some crisps.
6pm Tea followed by trifle or yoghurt.
7pm Shower and pyjamas. Orange juice.
7.30pm PJ shakes hands with Rick and Richard, and chooses a teddy to take to bed. Quick runaround, then bed.
Why PJ's care home, his mother's lifeline, had to close
Kathy Batt, director of the Catholic Children’s Rescue Society, says the decision to close Mount Carmel was agonising but they had little choice.
“The local authorities are not using us enough, and they are not paying enough for the services that they do use. It would have cost us £200,000 to keep it open.” Pauline Newman, director of children’s services for Manchester City Council, said: “It is regrettable that Mount Carmel should have to close. It is held in high regard by the council and the families of the young people who use it. We are working with them to find a suitable alternative.”
ELLA STIMSON
