A MOTHER of an autistic son says she is at her wits end trying to secure proper services for her child in a system she believes is 'falling apart'.
Deirdre Sheehan, Tralee, is living in a state of upheaval as she fights to get better services for her 14-year-old son Noah. But it is an uphill battle because the State has failed to provide a coherent and adequate system of care for children and adults with autism, Deirdre claims.
The single mother of two now fears someone could be killed, not least her son, if the HSE fails to provide more help in a number of areas.
Noah is on the moderate to severe range of the autism spectrum, unable to talk but acutely intelligent in many ways. Provided his challenging needs are met, Noah is a bright and happy boy, Deirdre said.
But he has taken to harming himself in recent months after he was moved out of a respite home he shared with other boys his age in Beaufort and placed in a two-bed home in another part of the county. For Noah, this was an upheaval that wreaked havoc on his sense of security.
"He had settled into a good routine with boys his own age in the previous respite house. I specifically warned the HSE that Noah needs months to adapt to any new environment, that any change would have to be very gradual," Deirdre said.
A nightmare ensued.
"As a result I had to get Southdoc out about four times a week because Noah was self-harming. He wasn't sleeping, he was hitting himself, banging his head off the wall and biting his hand. I had never seen him behave like that before."
In the middle of the upheaval the HSE decided to provide care in Deirdre's own home in Tralee for Noah on a round-the-clock basis, but the presence of strangers in the house proved upsetting for Noah and his behaviour worsened.
When it came time to move Noah into the new house, Deirdre was informed there would be no transport available and that she would have to drive Noah herself - with the help of HSE-contracted staff as minders. It proved disastrous, as she feared it would.
"They wanted to use my car because they had no vehicle. You do not want to take Noah on a long car journey because Noah could have an outburst and someone could be killed. I told them I could not drive him every day to the new house for this very reason, because somebody would be killed."
In a letter to the HSE dated Tuesday, November 26, Deirdre warned that a serious accident could occur:
"Due to a very serious incident while travelling in my car with staff, where we were assisted by an ambulance last Saturday, on no condition do I give permission for Noah to go to the respite house without Noah being transitioned in a safe form of transport first.
"If this does not happen, as would be obviously necessary in terms of safety, then I do not wish to avail of respite services for Noah and wish to return to just home support. I am very concerned for Noah's safety," Deirdre wrote.
On that occasion, Deirdre was forced to swerve the car as Noah suddenly struck out at his minders in the back seat and the car went off the road. Thankfully, no one was seriously injured, but Deirdre fears it is only a matter of time before a more serious incident takes place.
Because of the transport problem, Noah now stays in the house round-the-clock for most of the week - a scenario that is far from ideal, Deirdre said.
Staff in the home are doing all they can to assist, but Noah's welfare is now a continuing source of concern for Deirdre.
However, the respite care is vital and not just for Noah - Deirdre feared for her own mental health in the face of so much stress and exhaustion looking after Noah full time. While he is at home, Deirdre can barely get any sleep as she must check on him regularly - Noah's sleeping pattern is highly irregular and requires care around-the-clock.
She said she is now seriously thinking of moving to another part of the country to access better services. Meanwhile, Noah has also started to exhibit obsessive behaviour and continues to self harm in a sign of how deeply unhappy he feels in the new environment.
"There is simply no coherent system for autisitic children in this country. I remember seeing a dedicated home for children with autism in Denmark, in just a small town like any other, and they had every facility imaginable. It was wonderful, but there is nothing for us here," she said. "It's like life has stopped completely for us."