Re: It's us against the world

[Guest guest]

It's tragic, it's sad, it's understandable. It makes me sad. It makes me cry.

But it's even more:

FULL STEAM AHEAD!

It's us against the world

This is a very hard read. We hear about this happening more in the UK than here. Either way, it is a heartbreaker.

http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

The Times

April 20, 2006Times 2

It's us against the worldAnjana Ahuja

Alison Davies jumped off the Humber Bridge with her autistic son after an anguished phone call saying she couldn’t cope. A mother who faces similar pressures explains

When ine Leonard heard about the tragic case of Alison Davies, who apparently committed suicide with her 12-year-old son , she was sad but not surprised.

ine’s son, , 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 ine is a full-time carer (PJ has virtually no contact with his father, who split up with ine when PJ was two). She once briefly contemplated suicide but immediately sought help. She is now on antidepressants and has asked for counselling.

ine lives in a three-bedroomed semi-detached house near Manchester with PJ, (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, ine spends a week in Spain without PJ; her sister Breda moves in to care for him.

Of the case of Alison and Davies, ine 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 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, ine 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, ine,” 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 , 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 ’s so good with him. He won’t change nappies but 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 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 ine 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. ine 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. ine 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,” ine 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 , 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.” ine 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

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Come to America. We're full of heartbroken parents. Misery loves company and we're pretty good about talking each other down from the ledge.

It's us against the world

This is a very hard read. We hear about this happening more in the UK than here. Either way, it is a heartbreaker.

http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

The Times

April 20, 2006Times 2

It's us against the worldAnjana Ahuja

Alison Davies jumped off the Humber Bridge with her autistic son after an anguished phone call saying she couldn’t cope. A mother who faces similar pressures explains

When ine Leonard heard about the tragic case of Alison Davies, who apparently committed suicide with her 12-year-old son , she was sad but not surprised.

ine’s son, , 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 ine is a full-time carer (PJ has virtually no contact with his father, who split up with ine when PJ was two). She once briefly contemplated suicide but immediately sought help. She is now on antidepressants and has asked for counselling.

ine lives in a three-bedroomed semi-detached house near Manchester with PJ, (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, ine spends a week in Spain without PJ; her sister Breda moves in to care for him.

Of the case of Alison and Davies, ine 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 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, ine 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, ine,” 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 , 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 ’s so good with him. He won’t change nappies but 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 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 ine 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. ine 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. ine 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,” ine 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 , 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.” ine 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

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Me too. Covered in goosebumps. but can't help but wonder if there

was some biomedical intervention (specifically diet!) he wouldn't

greatly improve. treat the " leaky nappies " diarrhea...supps and of

course chelate. The kid's got eczema, gut issues, ADHD...classic

case. I feel for this " mum. " Anyone want to write her?

Any recc's for DAN-type doc in England?

>

> This is a very hard read. We hear about this happening more in the

UK than here. Either way, it is a heartbreaker.

>

>

>

> http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

>

>

> The Times April 20, 2006

> Times 2

>

> It's us against the worldAnjana Ahuja

> Alison Davies jumped off the Humber Bridge with her autistic son

after an anguished phone call saying she couldn't cope. A mother who

faces similar pressures explains When ine

Leonard heard about the tragic case of Alison Davies, who apparently

committed suicide with her 12-year-old son , she was sad but not

surprised.

> NI_MPU('middle'); ine's son, , 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

ine is a full-time carer (PJ has virtually no contact with his

father, who split up with ine when PJ was two). She once briefly

contemplated suicide but immediately sought help. She is now on

antidepressants and has asked for counselling. ine lives in a

three-bedroomed semi-detached house near Manchester with PJ,

(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,

ine spends a week in Spain without PJ; her sister Breda moves in

to care for him. Of the case of

> Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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 's so good with him. He won't

change nappies but 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 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 ine 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. ine 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. ine

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, " ine 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

, 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. " ine 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

>

>

>

>

> ---------------------------------

> Messenger with Voice. PC-to-Phone calls for ridiculously low

rates.

>

[Guest guest]

This article is painfully familiar. My seven year old is barely at the

development of a two

year old. And until recently, nothing we've done for her helped her development.

That

appears to be changing rather quickly on the Geiers protocol. I'll be able to

report more in

a few months.

It grieves me to hear about the mother who took both hers and her son's life. I

hope

nobody judges her, because we all know what autism has done to so many families

and

marriages. We all need lots of love and support from those around us just to

cope.

Emotionally AND financially!

>

> This is a very hard read. We hear about this happening more in the UK than

here. Either

way, it is a heartbreaker.

>

>

>

> http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

>

>

> The Times April 20, 2006

> Times 2

>

> It's us against the worldAnjana Ahuja

> Alison Davies jumped off the Humber Bridge with her autistic son after an

anguished

phone call saying she couldn't cope. A mother who faces similar pressures

explains

When ine Leonard heard about the tragic case of Alison Davies, who

apparently

committed suicide with her 12-year-old son , she was sad but not surprised.

> NI_MPU('middle'); ine's son, , 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

ine is a full-time carer (PJ has virtually no contact with his father, who

split up with

ine when PJ was two). She once briefly contemplated suicide but immediately

sought

help. She is now on antidepressants and has asked for counselling. ine

lives in a

three-bedroomed semi-detached house near Manchester with PJ, (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,

ine spends a

week in Spain without PJ; her sister Breda moves in to care for him. Of the

case of

> Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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

's so

good with him. He won't change nappies but 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 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 ine 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. ine 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.

ine 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, " ine 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 , 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. "

ine

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

>

>

>

>

> ---------------------------------

> Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

>

[Guest guest]

Judge her?? Nope. Not a bit. Judge the system that failed her, and him?

Yep. You bet.

If you cannot get help or support from anyone and cannot cope, what are your

choices? Give your kid up to the system? The same system who created this

problem to begin with? Hell no. it's more humane to take him with her than

to leave him to the mercy of the state institutions.

It's sad and it sucks, but unfortunately, I doubt that this case, nor the

countless others like it, will change this shitty system.

Re: It's us against the world

This article is painfully familiar. My seven year old is barely at the

development of a two

year old. And until recently, nothing we've done for her helped her

development. That

appears to be changing rather quickly on the Geiers protocol. I'll be able

to report more in

a few months.

It grieves me to hear about the mother who took both hers and her son's

life. I hope

nobody judges her, because we all know what autism has done to so many

families and

marriages. We all need lots of love and support from those around us just to

cope.

Emotionally AND financially!

>

> This is a very hard read. We hear about this happening more in the UK

than here. Either

way, it is a heartbreaker.

>

>

>

> http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

>

>

> The Times April 20, 2006

> Times 2

>

> It's us against the worldAnjana Ahuja

> Alison Davies jumped off the Humber Bridge with her autistic son after

an anguished

phone call saying she couldn't cope. A mother who faces similar pressures

explains

When ine Leonard heard about the tragic case of Alison Davies, who

apparently

committed suicide with her 12-year-old son , she was sad but not

surprised.

> NI_MPU('middle'); ine's son, , 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

ine is a full-time carer (PJ has virtually no contact with his father,

who split up with

ine when PJ was two). She once briefly contemplated suicide but

immediately sought

help. She is now on antidepressants and has asked for counselling. ine

lives in a

three-bedroomed semi-detached house near Manchester with PJ, (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,

ine spends a

week in Spain without PJ; her sister Breda moves in to care for him. Of

the case of

> Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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

's so

good with him. He won't change nappies but 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 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 ine 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. ine 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.

ine 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, " ine 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 , 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. "

ine

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

>

>

>

>

> ---------------------------------

> Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

>

[Guest guest]

Me too! His diet was horrible. What is a trifle?

> >

> > This is a very hard read. We hear about this happening more in

the

> UK than here. Either way, it is a heartbreaker.

> >

> >

> >

> > http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

> >

> >

> > The Times April 20, 2006

> > Times 2

> >

> > It's us against the worldAnjana Ahuja

> > Alison Davies jumped off the Humber Bridge with her autistic

son

> after an anguished phone call saying she couldn't cope. A mother

who

> faces similar pressures explains When ine

> Leonard heard about the tragic case of Alison Davies, who

apparently

> committed suicide with her 12-year-old son , she was sad but

not

> surprised.

> > NI_MPU('middle'); ine's son, ,

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

> ine is a full-time carer (PJ has virtually no contact with his

> father, who split up with ine when PJ was two). She once

briefly

> contemplated suicide but immediately sought help. She is now on

> antidepressants and has asked for counselling. ine lives in

a

> three-bedroomed semi-detached house near Manchester with PJ,

> (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,

> ine spends a week in Spain without PJ; her sister Breda moves

in

> to care for him. Of the case of

> > Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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 's so good with him. He

won't

> change nappies but 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 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 ine 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. ine 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. ine

> 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, " ine 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

> , 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. " ine 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

> >

> >

> >

> >

> > ---------------------------------

> > Messenger with Voice. PC-to-Phone calls for ridiculously

low

> rates.

> >

>

[Guest guest]

Me too! His diet was horrible. What is a trifle?

> >

> > This is a very hard read. We hear about this happening more in

the

> UK than here. Either way, it is a heartbreaker.

> >

> >

> >

> > http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

> >

> >

> > The Times April 20, 2006

> > Times 2

> >

> > It's us against the worldAnjana Ahuja

> > Alison Davies jumped off the Humber Bridge with her autistic

son

> after an anguished phone call saying she couldn't cope. A mother

who

> faces similar pressures explains When ine

> Leonard heard about the tragic case of Alison Davies, who

apparently

> committed suicide with her 12-year-old son , she was sad but

not

> surprised.

> > NI_MPU('middle'); ine's son, ,

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

> ine is a full-time carer (PJ has virtually no contact with his

> father, who split up with ine when PJ was two). She once

briefly

> contemplated suicide but immediately sought help. She is now on

> antidepressants and has asked for counselling. ine lives in

a

> three-bedroomed semi-detached house near Manchester with PJ,

> (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,

> ine spends a week in Spain without PJ; her sister Breda moves

in

> to care for him. Of the case of

> > Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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 's so good with him. He

won't

> change nappies but 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 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 ine 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. ine 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. ine

> 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, " ine 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

> , 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. " ine 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

> >

> >

> >

> >

> > ---------------------------------

> > Messenger with Voice. PC-to-Phone calls for ridiculously

low

> rates.

> >

>

[Guest guest]

I've got a friend with twin 6-year-old severely autistic boys. Not

potty-trained non-verbal nightmare. They weighed 6 pounds when they got

62.5 micrograms of ethylmercury from 3 vaccines, all on the same day. I

know the rest of the world does not give a shit, but this amount of

mercury EXCEEDS THE FDA METHYLMERCURY LIMIT BY 220X. AND PEOPLE ARE

DEFENDING THIS, CAN YOU @#$%^ & *! BELIEVE IT?! It's a friggin miracle

that half of these parents have not already jumped off a bridge.

[Guest guest]

Should someone forward the story to Gerberding? And the AAP?

>

> I've got a friend with twin 6-year-old severely autistic boys. Not

> potty-trained non-verbal nightmare. They weighed 6 pounds when they

got

> 62.5 micrograms of ethylmercury from 3 vaccines, all on the same

day. I

> know the rest of the world does not give a shit, but this amount of

> mercury EXCEEDS THE FDA METHYLMERCURY LIMIT BY 220X. AND PEOPLE ARE

> DEFENDING THIS, CAN YOU @#$%^ & *! BELIEVE IT?! It's a friggin miracle

> that half of these parents have not already jumped off a bridge.

>

[Guest guest]

Just a small note. My understanding is that the numbers we banty about regarding 100+ times EPA numbers are actually for oral mercury, not for the injected mercury in the vaccines. With lower absorption from the GI tract, the injected form is actually significantly more efficiently introduced into the child's system than it would be from the oral introduction (from which the EPA numbers are generated). Depressingly, it's actually much worse.

Re: It's us against the world

I've got a friend with twin 6-year-old severely autistic boys. Not potty-trained non-verbal nightmare. They weighed 6 pounds when they got 62.5 micrograms of ethylmercury from 3 vaccines, all on the same day. I know the rest of the world does not give a shit, but this amount of mercury EXCEEDS THE FDA METHYLMERCURY LIMIT BY 220X. AND PEOPLE ARE DEFENDING THIS, CAN YOU @#$%^ & *! BELIEVE IT?! It's a friggin miracle that half of these parents have not already jumped off a bridge.

[Guest guest]

They're not just defending it. In some cases, they're actively working to overturn legislation in order to inject toxic waste into the kids.

Re: It's us against the world

I've got a friend with twin 6-year-old severely autistic boys. Not potty-trained non-verbal nightmare. They weighed 6 pounds when they got 62.5 micrograms of ethylmercury from 3 vaccines, all on the same day. I know the rest of the world does not give a shit, but this amount of mercury EXCEEDS THE FDA METHYLMERCURY LIMIT BY 220X. AND PEOPLE ARE DEFENDING THIS, CAN YOU @#$%^ & *! BELIEVE IT?! It's a friggin miracle that half of these parents have not already jumped off a bridge.

[Guest guest]

A doctor actually told one of my state Reps that thimerosal is good

and needs to be in vaccines as much as possible. Nope, I'm not making

it up and yep, I'll try to get the name of the doc, lol.

Debi

>

> They're not just defending it. In some cases, they're actively

working to overturn legislation in order to inject toxic waste into

the kids.

>

[Guest guest]

Hey !

If she had an empathetic drop to her..yes!

But, I could see her just saying this happens in the UK,,not here!

Someone brought up Sheehan...maybe that is what would get

G and the CDC...before they cross the moat into the new CDC

castle, they would have to see a " " ,,or Dad..but as I am typing

this, her real response would be

" But the benefits outweigh any theoretical dangers..Just look at the

MUMPS " ..

> >

> > I've got a friend with twin 6-year-old severely autistic boys.

Not

> > potty-trained non-verbal nightmare. They weighed 6 pounds when

they

> got

> > 62.5 micrograms of ethylmercury from 3 vaccines, all on the same

> day. I

> > know the rest of the world does not give a shit, but this amount

of

> > mercury EXCEEDS THE FDA METHYLMERCURY LIMIT BY 220X. AND PEOPLE

ARE

> > DEFENDING THIS, CAN YOU @#$%^ & *! BELIEVE IT?! It's a friggin

miracle

> > that half of these parents have not already jumped off a bridge.

> >

>

[Guest guest]

" Any recc's for DAN-type doc in England? "

There are DAN doctors in 22 countries, including a few in Great

Britain. http://www.autismwebsite.com/ari/dan/danforeign.htm.

There are Rescue Angels in 22 as well, but none in GB.

http://www.generationrescue.org/what_rescue.php.

> >

> > This is a very hard read. We hear about this happening more in the

> UK than here. Either way, it is a heartbreaker.

> >

> >

> >

> > http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

> >

> >

> > The Times April 20, 2006

> > Times 2

> >

> > It's us against the worldAnjana Ahuja

> > Alison Davies jumped off the Humber Bridge with her autistic son

> after an anguished phone call saying she couldn't cope. A mother who

> faces similar pressures explains When ine

> Leonard heard about the tragic case of Alison Davies, who apparently

> committed suicide with her 12-year-old son , she was sad but not

> surprised.

> > NI_MPU('middle'); ine's son, , 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

> ine is a full-time carer (PJ has virtually no contact with his

> father, who split up with ine when PJ was two). She once briefly

> contemplated suicide but immediately sought help. She is now on

> antidepressants and has asked for counselling. ine lives in a

> three-bedroomed semi-detached house near Manchester with PJ,

> (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,

> ine spends a week in Spain without PJ; her sister Breda moves in

> to care for him. Of the case of

> > Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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 's so good with him. He won't

> change nappies but 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 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 ine 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. ine 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. ine

> 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, " ine 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

> , 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. " ine 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

> >

> >

> >

> >

> > ---------------------------------

> > Messenger with Voice. PC-to-Phone calls for ridiculously low

> rates.

> >

>

[Guest guest]

Well said . I've been wondering how the Gier's protocal was going for your

daughter. We recently started valtrex for my low functioning 6 year old son and

saw great immediate viral flares mixed in with great cognition and interactions.

Hopefully we will all find the right protocals for our children. I only wish

for this woman the knowledge that there is hope and where to go find it. I cry

for the ones it is too late to reach. -

>From: Nanstiel <erik@...>

>Date: Thu Apr 20 12:43:55 CDT 2006

>EOHarm

>Subject: Re: It's us against the world

>This article is painfully familiar. My seven year old is barely at the

development of a two

>year old. And until recently, nothing we've done for her helped her

development. That

>appears to be changing rather quickly on the Geiers protocol. I'll be able to

report more in

>a few months.

>

>It grieves me to hear about the mother who took both hers and her son's life. I

hope

>nobody judges her, because we all know what autism has done to so many families

and

>marriages. We all need lots of love and support from those around us just to

cope.

>Emotionally AND financially!

>

>

>

>

>

>>

>> This is a very hard read.  We hear about this happening more in the UK than

here.  Either

>way, it is a heartbreaker.

>>   

>>  

>>   

>>   http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

>>   

>>                                       

>>         The Times  April 20, 2006

>> Times 2

>>

>>   It's us against the worldAnjana Ahuja

>>   Alison Davies jumped off the Humber Bridge with her autistic son after an

anguished

>phone call saying she couldn't cope. A mother who faces similar pressures

explains                 

>When ine Leonard heard about the tragic case of Alison Davies, who

apparently

>committed suicide with her 12-year-old son , she was sad but not

surprised.  

>>                 NI_MPU('middle');  ine's son, , 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

>ine is a full-time carer (PJ has virtually no contact with his father, who

split up with

>ine when PJ was two). She once briefly contemplated suicide but immediately

sought

>help. She is now on antidepressants and has asked for counselling.   ine

lives in a

>three-bedroomed semi-detached house near Manchester with PJ, (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,

ine spends a

>week in Spain without PJ; her sister Breda moves in to care for him.   Of the

case of

>>  Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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

's so

>good with him. He won't change nappies but 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 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 ine 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. ine 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.

>ine 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, " ine 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 , 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. "

ine

>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

>>

>>    

>>

>>            

>> ---------------------------------

>> Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

>>

>

>

>

>

>

>

>

[Guest guest]

, There are 6 Rescue Angels in the UK/GB/Eng. (I'll send them

the article).

> > >

> > > This is a very hard read. We hear about this happening more in the

> > UK than here. Either way, it is a heartbreaker.

> > >

> > >

> > >

> > > http://www.timesonline.co.uk/article/0,,8123-2141717,00.html

> > >

> > >

> > > The Times April 20, 2006

> > > Times 2

> > >

> > > It's us against the worldAnjana Ahuja

> > > Alison Davies jumped off the Humber Bridge with her autistic son

> > after an anguished phone call saying she couldn't cope. A mother who

> > faces similar pressures explains When ine

> > Leonard heard about the tragic case of Alison Davies, who apparently

> > committed suicide with her 12-year-old son , she was sad but not

> > surprised.

> > > NI_MPU('middle'); ine's son, , 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

> > ine is a full-time carer (PJ has virtually no contact with his

> > father, who split up with ine when PJ was two). She once briefly

> > contemplated suicide but immediately sought help. She is now on

> > antidepressants and has asked for counselling. ine lives in a

> > three-bedroomed semi-detached house near Manchester with PJ,

> > (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,

> > ine spends a week in Spain without PJ; her sister Breda moves in

> > to care for him. Of the case of

> > > Alison and Davies, ine 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 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, ine 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, ine, " 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 , 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 's so good with him. He won't

> > change nappies but 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 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 ine 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. ine 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. ine

> > 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, " ine 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

> > , 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. " ine 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

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Messenger with Voice. PC-to-Phone calls for ridiculously low

> > rates.

> > >

> >

>

[Guest guest]

I just saw 5 or 6 rescue angels in the United Kingdom. One of them, Mandy, is really on top of things...contributes frequently to autism treatment. I 'll forward it to her.

-------------- Original message -------------- From: " Barry" <kevanne88@...> "Any recc's for DAN-type doc in England?"There are DAN doctors in 22 countries, including a few in GreatBritain. http://www.autismwebsite.com/ari/dan/danforeign.htm. There are Rescue Angels in 22 as well, but none in GB.http://www.generationrescue.org/what_rescue.php.--- In EOHarm , "djberle" <dberle@...> wrote:>> Me too. Covered in goosebumps. but can't help but wonder if there > was some biomedical intervention (specifically diet!) he wouldn't > greatly improve. treat the "leaky nappies" diarrhea...supps and of > course chelate.

The kid's got eczema, gut issues, ADHD...classic > case. I feel for this "mum." Anyone want to write her?> > Any recc's for DAN-type doc in England?> > > > >> > This is a very hard read. We hear about this happening more in the > UK than here. Either way, it is a heartbreaker.> > > > > > > > http://www.timesonline.co.uk/article/0,,8123-2141717,00.html> > > > > &g

t; The Times April 20, 2006> > Times 2> > > > It's us against the worldAnjana Ahuja > > Alison Davies jumped off the Humber Bridge with her autistic son > after an anguished phone call saying she couldn't cope. A mother who > faces similar pressures explains When ine > Leonard heard about the tragic case of Alison Davies, who apparently > committed suicide with her 12-year-old son , she was sad but not > surprised. > > NI_MPU('middle'); ine's son, , 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 > ine is a full-time carer (PJ has virtually no contact with his > father, who split up with ine when PJ was two). She once briefly > contemplated suicide but immediately sought help. She is now on > antidepressants and has asked for counselling. ine lives in a > three-bedroomed semi-detached house near Manchester with PJ, > (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, > ine spends a week in Spain without PJ; her sister Breda moves in > to care for him. Of the case of> > Alison and Davies, ine says: "It has happe

ned 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 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, ine 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 th

at 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 an

d 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. BR>> 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 nurser

y, 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> >&nb

sp; 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 yo

u can't. It's > as if someone's ripped out my heart. People say, "I don't know how > you do it, ine," 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 , 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 's so good with him. He won't > change nappies but 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 pl

ace > 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 BR>> 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 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 > t

hat they're not the only ones with severely autistic children. > Parents wishing to contact ine 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. ine 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. ine > 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," ine 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 > , 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." ine 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> > > > > > > > > > ---------------------------------> > Messenger with Voice. PC-to-Phone calls for ridiculously low > rates.> >>

[Guest guest]

Yes! Do!

Get this name and let's talk to him about the benefits of

thimerosal...we should all take a pill of ethylmercury EVERYDAY for

good health and highly effective mental function!!

> >

> > They're not just defending it. In some cases, they're actively

> working to overturn legislation in order to inject toxic waste into

> the kids.

> >

>

[Guest guest]

Yes! Do!

Get this name and let's talk to him about the benefits of

thimerosal...we should all take a pill of ethylmercury EVERYDAY for

good health and highly effective mental function!!

> >

> > They're not just defending it. In some cases, they're actively

> working to overturn legislation in order to inject toxic waste into

> the kids.

> >

>

[Guest guest]

like it would matter........

You know...its all for the greater good.

> >

> > I've got a friend with twin 6-year-old severely autistic boys.

Not

> > potty-trained non-verbal nightmare. They weighed 6 pounds when

they

> got

> > 62.5 micrograms of ethylmercury from 3 vaccines, all on the same

> day. I

> > know the rest of the world does not give a shit, but this amount

of

> > mercury EXCEEDS THE FDA METHYLMERCURY LIMIT BY 220X. AND PEOPLE

ARE

> > DEFENDING THIS, CAN YOU @#$%^ & *! BELIEVE IT?! It's a friggin

miracle

> > that half of these parents have not already jumped off a bridge.

> >

>

[Guest guest]

Prov 29:18 Where there is no vision, the people perish

I actually cringe every time I read about a parent slamming their kid's head into a wall or beating him or her to death, and can't help thinking and wondering about it. What was that deacon thinking about when he squashed that poor kid to death? I understand what Boyd Haley meant by describing things for us parents as "mad child disease". Maybe some parent's kid got the light-dusting or autism-lite as its' called and they don't understand.

Before a friend was willing to whisper to us, your son looks like he has autism, and we were off on the road to recovery, would run for days on three hour's worth of sleep. He would run twenty-two hours at a time, grab a thirty minute nap and run another twenty hours. What got me mad was he always had a thing for laying on my stomach and drilling his elbow into my throat. He had the Dusty bionic elbow routine down pat. Kerry and I learned to defeat his Chinese sleep torture by tagging up.

Still for around two years he never got a normal night's sleep. Sometimes this meant an all-night session of Car TV, one of those auto sales cable channels. Red car. Blue car. Blue car. Green car. If I failed to repeat the car called out a 4 AM meltdown followed. didn't care about my sleep. So I just splashed some water on my face in the morning and went to work.

You know when the needle on the stress meter is about to snap off, I always remember the kind folks that warned us autism transforms families into pariahs, the outcasts of society. Friends, family, doctors, insurance companies, schools, neighbors can and do disown us and our kids. It helps knowing this up front and makes taking the insolence not so hard. Fortunately we were told it'd be this way.

Re: It's us against the world

This article is painfully familiar. My seven year old is barely at the development of a two year old. And until recently, nothing we've done for her helped her development. That appears to be changing rather quickly on the Geiers protocol. I'll be able to report more in a few months.It grieves me to hear about the mother who took both hers and her son's life. I hope nobody judges her, because we all know what autism has done to so many families and marriages. We all need lots of love and support from those around us just to cope. Emotionally AND financially!>> This is a very hard read. We hear about this happening more in the UK than here. Either way, it is a heartbreaker.> > > > http://www.timesonline.co.uk/article/0,,8123-2141717,00.html> > > The Times April 20, 2006> Times 2> > It's us against the worldAnjana Ahuja > Alison Davies jumped off the Humber Bridge with her autistic son after an anguished phone call saying she couldn't cope. A mother who faces similar pressures explains When ine Leonard heard about the tragic case of Alison Davies, who apparently committed suicide with her 12-year-old son , she was sad but not surprised. > NI_MPU('middle'); ine's son, , 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 ine is a full-time carer (PJ has virtually no contact with his father, who split up with ine when PJ was two). She once briefly contemplated suicide but immediately sought help. She is now on antidepressants and has asked for counselling. ine lives in a three-bedroomed semi-detached house near Manchester with PJ, (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, ine spends a week in Spain without PJ; her sister Breda moves in to care for him. Of the case of> Alison and Davies, ine 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 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, ine 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, ine," 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 , 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 's so good with him. He won't change nappies but 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 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 ine 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. ine 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. ine 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," ine 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 , 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." ine 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> > > > > ---------------------------------> Messenger with Voice. PC-to-Phone calls for ridiculously low rates.>

[Guest guest]

What about Imus or Scarborough?

Re: It's us against the world

like it would matter........You know...its all for the greater good.> >> > I've got a friend with twin 6-year-old severely autistic boys. Not > > potty-trained non-verbal nightmare. They weighed 6 pounds when they > got > > 62.5 micrograms of ethylmercury from 3 vaccines, all on the same > day. I > > know the rest of the world does not give a shit, but this amount of > > mercury EXCEEDS THE FDA METHYLMERCURY LIMIT BY 220X. AND PEOPLE ARE > > DEFENDING THIS, CAN YOU @#$%^ & *! BELIEVE IT?! It's a friggin miracle > > that half of these parents have not already jumped off a bridge.> >>