‘We must fight for everything – I feel that we are trodden on by the State’

MOTHER-of-four Jessica Bennett knows what it is like to be past breaking point but unable to get a rest.

Jessica has three children who have autism. The only weekly respite she receives is when a care worker comes to take her daughter Niamh shopping for two hours.

The rest of the time is devoted to looking after her children.

Some days Jessica gets no sleep for 24 hours. She said: “I have three children who are on the autism spectrum – Aidan (18), Niamh (17) and Saoirse (10).” Jessica’s other daughter Clodagh (10) has no disability.

Jessica said: “My experience is that parents like us have to fight for everything. I feel we are trodden on by the State.”

From Limerick city, she was recently honoured for her work after being chosen as the Family Carers Ireland Limerick Carer of the Year.

She longs for simple pleasures such as being able to turn on the Hoover or invite other children over the play – but this is difficult because of Niamh’s autism and her very distressed reaction to noise.

Bed-blocked

Vulnerable to emotional outbursts, Niamh has mental health difficulties and was receiving overnight respite at one stage but this stopped.

Places are being bed-blocked for children in emergencies.

Jessica said: “There is a second respite centre in Limerick and while there was plenty of case meetings there has been no pro-active support provided for Niamh with the service.”

She attends a special school in Ennis and this requires a 40-minute drive to and from Limerick if Jessica drives her. But this is not always possible because Jessica has the responsibility of caring for the high needs of her other children: “I am up at 5am and never in bed before 2am. Some days there is no sleep.”

A HSE spokesman said it funds two residential respite facilities in Limerick and also in-home respite but demand outweighs resources.