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HELP HIM: 5 year old boy with Autism that the Irish state wont help

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HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  Guest on Mon 16 May - 23:15

THIS WEEK CALUM (5) WAS SEDATED ON A COCKTAIL OF VALIUM AND ANTI-PSYCHOTIC DRUGS BECAUSE THE STATE WON'T TREAT HIS AUTISM.


http://www.sundayworld.com/columnists/index.php

HELP HIM: Calum (5) was sedated on a cocktail of valium and anti-psychotic drugs because the State won't treat his autism
THIS five-year old boy is on valium and anti-psychotic drugs after his desperate parents brought him to a hospital A & E department and begged: "We've hit rock bottom. Somebody please help."
Little Calum Connor is being sedated on a cocktail of drugs used for adults suffering from schizophrenia and bipolar disorder because, his parents say, he has been abandoned by State and left to 'rot' in a hospital bed.
In a week when it emerged that the rich will escape a smash-and-grab raid on pensions, Calum's parents, Kathy and Jonathan, have been told the State can't afford to give him the help he needs.
They say the blonde-haired little boy is a victim of horrendous waiting lists and unforgivable mismanagement of the health service.
Calum is currently being sedated on a mix of Ativan (a slow release Valium), Respiridone and Olanzapene, at Tallaght hospital in Dublin where Kathy and Jonathan say they brought him as they had nowhere else to turn.
The Dublin couple is deeply upset at having to speak out today in a bid to fight for their child and for the services he so badly needs.
The little boy, who suffers from severe autism and a mild intellectual disability, has been smashing his head off walls and furniture for weeks, smearing his faeces on the walls of their home and has now begun to attack them, his brothers and sister.

STRUGGLING: Kathy and Jonathan Connor need help
Last week he savagely bit his seven year-old sister Keeley, punched 17 month-old Reuben in the face, attacked his mum with a screwdriver and got so violent that his parents were terrified he would hurt himself.
They believe his autism is deteriorating as he has never received the applied behaviour analysis (ABA), one-on-one occupational therapy, experts say he needs.
Instead he has been placed in a school for children with intellectual disabilities, where his autism is not being treated at all.
Desperate
In desperation, his parents had to take him to Tallaght hospital this week after a "complete meltdown" which left them with nowhere else to turn.
"Calum has fallen through the gaps. He has severe autism but also a mild intellectual disability," says Kathy.
"The place he has been given in Stewart's Hospital is for his intellectual disability but they can do nothing to treat his autism. It has just got worse and worse - now we can hardly recognise him as our little boy anymore."

CRY FOR HELP: Calum in torment this week in A
"Nobody seems to listen to us. We are prepared to move out of our home, to go anywhere in the country, so he can get the help he needs.
"We are desperate and would do anything now. But still we are just getting closed doors and told nobody can help. He is just a little boy but he is being left to rot."
Jonathan and Kathy knew that something was wrong with little Calum as soon as they brought him home from hospital.
"He wouldn't settle. If you picked him up he would just go rigid and scream," says Jonathan. "He didn't want to be picked up or rocked, and the only time he stopped was when we put him in a room on his own."
"If we put him in the play pen he would just sit there. If you went near him he would scream. He didn't want to be hugged,"
At nine months, during Calum's developmental check, his parents were told he had hearing difficulties and needed grommets, which they paid for privately as the State's waiting lists were so long.
"We were put on a list for him to be assessed and after about a year they started bringing him down to Cherry Orchard to see a psychologist," says Jonathan.
"But in the middle of it the psychologist got sick and he was put on the back burner. We went to Solas, one of the charities, and paid € 1,700 to get him assessed privately.
"We were told then that he was severely autistic and that he needed occupational therapy, as well as speech and language therapy but that the lists were closed."
First he was given a place in a pre-school in Harold's Cross that caters for autistic children but was then moved when a Health Board assessment found he was also mildly intellectually disabled, to pre-school at Stewart's Hospital.
The hospital caters for children with moderate to profound intellectual disabilities but does not have facilities to treat autism.

DAILY BATTLE: Kathy tries to help her autistic son Conor
"It is a fantastic service but they have told us that they cannot give him any occupational therapy and that they have no treatment services for autism," says Kathy.
"Even though he is mildly intellectually disabled and severely autistic he is only being treated in a service for people with intellectual problems. It's as if it is easier for them to throw him in there and forget about him."
Calum was five last November but his parents say his behaviour is getting worse all the time as he is not getting occupational therapy.
"We just don't have the training to know what to do with him," says Kathy. "He was five in November but if you look at Calum he is not as developed as his brother Reuben who isn't a year-and-a-half yet.
"He is still in nappies, he will sit for hours in a corner ripping paper to shreds and he bangs his head off walls all the time now," says Kathy.

OUT OF CONTROL: Calum needs help but the State will not provide it
"Our seven-year old daughter has bite marks all over her arms - we have had to tell her not to take her jumper off in school in case anyone thinks we are abusing her.
"It has just got so bad in the house that we cannot cope any more. He smears his faeces on the walls. He erupts at any time and we can't leave him on his own for a second with the other children.
"He toppled the baby, Glen, out of his seat the other day. We are scared that someone will get hurt.
"Calum can't use a knife and fork. He eats with his hands. A year ago things were bad and he was up all night and going ballistic but now it's just ten times worse.
"We just can't cope. I don't have the skills to help him."
Jonathan says he has done everything he can to help his son, even forking out €45,000 for an extension to their home in Clondalkin in Dublin so he can have his own space.
"It is awful. We don't know where to turn now. We are desperate," Jonathan says.
"He is totally out of control. We brought him into the hospital and he punched Kathy in the face, he attacked the nurses and he hit Reuben full force in the face.
"Before we brought him in he had gone for Kathy's neck with a screwdriver. Reuben is terrified of him. He shakes when Calum comes near him now.
Charities
"He is just not like our son anymore. We feel like awful parents, we feel like we are abandoning him but what else can we do? We have hit rock bottom.We have reached the end," he says.
"And yet the State tells us what he needs but then tells us they can't give it to him. They offered us respite - for two weeks, a few hours a day - then we are on our own again. No one-to-one therapy, which is what he needs."
And Kathy says that she feels trapped by the system. "I know there are waiting lists and other kids but we can only fight for our child. We contact charities and they say to us, 'He is in a service don't take him out'.
"He's in a service all right but it's a service that is not for an autistic child. His autism is severe but they see his intellectual disability and they don't want him anywhere else. Where does all the money go in this country? None of it is going to Calum.
"We would do anything to help our son, anything. We would move house or walk through fire. We love him dearly but we are out of depth, we don't know what to do, we don't know where to turn."


Last edited by Antoinette on Mon 16 May - 23:16; edited 1 time in total
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  Guest on Mon 16 May - 23:16

GOVERNMENT HAS DONE NOTHING
AUTISM groups have been campaigning for years to get better services for children suffering from the disorder.
Many are currently fighting to have the cap on special needs teaching posts lifted and lobbying the new government to make no further cuts to front line services.
Parents of children with autism face long waiting lists for assessment. Many have gone to court to try to force the State to provide for their children.
It emerged this week that the State has spent more than €14 million in legal costs and damages to families.
In opposition the current Government was very vocal and against any cuts in services for children with autism or other special needs.
Current Health Minister James Reilly criticised the government for failing to provide appropriate education for children with autism in the wake of a failed bid by Yvonne and Cian Ó Cuanacháin, to force the State to pay for ABA (applied behavioural analysis) tuition for their son.
Just this month the Health Minister told the Dail that the HSE is finalising a National Review of Autism Services.
The level of funding for other mental health services has also been pitiful even in the boom years, according to campaigners.
The lack of resources has led to children with intellectual disabilities in particular being placed in Garda cells and other inappropriate places as there is nowere for them to go.
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  Luz on Tue 17 May - 0:20

This is terrible.
I wish I could do something to help, but what?
If it wasn't so far away I would suggest this family to come to Portugal, we have very good facilities for autistic children and there is support for these patients.

I feel helpless...

If there's anyway we can contribute, please tell us Antoinette.
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  Dimsie on Tue 17 May - 1:26

I know there's ABA training here in N Ireland but I think it's limited by financial constraints, so probably not much hope of Calum getting any help up here. It's all wrong that he has to be sedated on those drugs and I'm not surprised his parents are at their wits' end; what an awful situation to be in, not knowing where to turn. I'm afraid autistic children seem to come bottom of the heap. I agree with the parents about not knowing where all the money goes, if the Irish health service is much the same as ours up here. There seems to be money to pay for all sorts of frivolous nonsense, but precious little where it's really needed.
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  AnnaEsse on Tue 17 May - 7:51

I did some residential work with children with autism some years ago and it probably hasn't changed very much since then. What I found was that some parents would have wanted to keep their child at home, but support wasn't available. Funding was available for residential care, but not adequate support to keep a child at home.

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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  Guest on Tue 17 May - 8:55

Hopefully the Irish will rally round this child.
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  fred on Tue 17 May - 9:00

It makes me so cross. There has been so much financial help for one lost child, who is more than likely dead, and this poor little boy is living such a desperate life. Maybe now it has been in the media a little bit, someone will pay some attention and get him some help.
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  Angelique on Tue 17 May - 10:41

I too hope that this family and Callum will get the help he needs. It is so upsetting to see that they have struggled so much and used what money they have to help their son.

My heart goes out to them.
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  Dimsie on Tue 17 May - 11:48

carmen wrote:Hopefully the Irish will rally round this child.
Yes, I think if the family's plight gets enough publicity they will. A year or two ago Alan Doherty, a young lad from Donegal who needed an operation to give him a chin, was helped by public donations from all over Ireland. Unfortunately the outcome wasn't as good as he'd hoped, but there was a definite improvement. The necessary money was raised to send him to the US and have several operations.

I know Calum's case is different, not something that can be fixed by surgery, but I think people would be happy to donate if they knew how bad his condition is and how his family can't afford to get his the treatment that might make an enormous difference to him. I know there are terrible constraints on health services nowadays, also that many people are struggling financially themselves, but people are still often willing to help those in need.
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Re: HELP HIM: 5 year old boy with Autism that the Irish state wont help

Post  AnnaEsse on Tue 17 May - 11:53

Calum and his parents have no political power. Those who decide on funding are all too aware that if funding for treatment is denied, Calum will still have his family to look after him, whatever happens: his family will not abandon him and they won't ruin the country financially, like the banks or blow up buildings. So, the family and Calum can be ignored. It's the way it is these days: those too vulnerable to have any political clout can just go whistle Dixie!

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