‘HSE knows that care for my autistic son is an absolute red alert – but I still have to fight,’ says desperate mother
“WE’RE slaves. Parents like me do 24-hour days and are treated like this by the system. But we can’t do this anymore,” says Adrienne Murphy.
Four months ago, the heartbroken mother forced herself to come to terms with the fact that she could no longer look after her severely disabled son Caoimh (14) at home, and that he would require residential care.
“I spent three days crying in sheer grief, saying this is not going to work anymore,” she said.
“It’s a terrible thing to have to do and I have to fight for this – while being totally grief-stricken about it.”
Caoimh has severe autism, is doubly incontinent, unable to speak and increasingly suffers deeply traumatising episodes during which he becomes so upset that he injures himself, as well as his beloved family.
Through lengthy research and patience, Ms Murphy, a journalist and advocate, discovered a method of teaching Caoimh to communicate by pointing at letters on a metal alphabet.
“I broke him out of his locked-in state – but it’s a very slow process and he can’t do it when he’s upset,” explained the Dublin mother.
“He told us afterwards that his mind is saying ‘stop, stop’ but body is doing something else entirely.”
Caoimh suffered a severe psychotic episode at home last May and violently assaulted his mother.
He was restrained by four members of the emergency services and taken to the accident and emergency unit.
“It was horrendously stressful,” said Ms Murphy.
Her 17-year-old son Fiach has been left devastated by this situation, she said.
“We’re cracking. This is destroying our relationship with each other,” said Ms Murphy.
She claimed the HSE has known since May that this is a “an absolute red alert” situation and that medical authorities have assessed the situation and warn that it is too dangerous to be allowed to continue.
“I’ve had people who run residential services saying that his needs must be given and they can’t believe I’ve lasted until he was 14,” she added.
In June, she claimed she was given the ‘green light’ by the HSE for her son to be referred to residential care agencies and she found a place where she was satisfied Caoimh would get the care he needs – but he was declined by the centre.
She then learned of another residential unit which currently has vacancies.
It is close to his school – which he loves – and also close to home, to allow Ms Murphy to visit him daily and put all her energy into teaching him to further communicate.
However, she claims the HSE is “dragging its heels” and she is frustrated and fearful of what might happen.
The most recent email from the health authority stated that her son would have to be reassessed because she had taught him to communicate – warning her that they did not know when this assessment would happen. At the end of her tether after another psychotic episode last Wednesday, she was forced to take her son to Crumlin children’s hospital – where he was placed on the burns unit because there was no place else for him and she is staying with him until appropriate care is arranged.
“I am not abandoning him, the hospital knows what’s happening here,” she said.
She said parents in her situation are being forced to fight tooth and nail for resources their children deserve, adding: “It is completely wrong.”
In a statement, the HSE said it was aware of this case and would continue to work with the family in relation to home support and other care options.