Couple 'at breaking point' with challenged young son appeal for more support

A couple whose young son has a range of challenges have shared their story of trying to care for him at home, and appealed for more State support for their family and others.

Edel Dooley, is mother to Jacob aged eight, who has been diagnosed with ASD (Autism Spectrum Disorder) PDD NOS (pervasive developmental disorder not otherwise specified), mixed expressive receptive language disorder, intellectual disability with sensory issues yet to be diagnosed. He is also non-verbal and doubly incontinent.

Edel said Jacob had "no safety awareness...He has strangled me to the point where I almost passed out."

She realised after another incident in which Jacob pushed her down the stairs while they were playing that her family is at breaking point.

She said he was very gifted, but people were unaware of that as the family did not get out into the community due to Jacob's sometimes-violent meltdowns.

As an example, she said that just before their carer arrived yesterday, she and Jacob were singing songs and doing clap-handies. But, as soon as he heard the carers come in the front door, he dug his nails into her neck and bit into her head. It took three people to separate them.

"Because he can't cope with these overwhelming feelings, this is what happens," she said. "Being non-verbal is very difficult - it's like every time you try to express yourself, somebody buts a hand over your mouth. Eventually, you're going to bite that hand.

"He hurts me every day."

Edel said she feels "alone, abandoned by our State and fearful for our future". The couple have two other young children, neither of whom want to be alone in the same room as Jacob, out of fear.

"A lot of nights it's just so tough, I just want to climb into bed with our son and both of us not wake up. I am not mentally strong enough to keep going the way things are going," said Edel.

On a waiting list for two years for respite, Edel and her husband Anton told RTE's Today with Sean O'Rourke programme that when assessed, it was acknowledged that Jacob needs two-to-one support. They have a home care package where carers come and help while Edel makes their dinner and completes other household demands.

"He's an eight-year-old boy who we love with all our hearts" and said she did not want to "abandon" him to institutional care.

Edel said the system is failing whole communities, and countless families. They said they only received 'boiler-plate' responses to their requests for help from government departments.

They say the best they can currently hope for is one night a month in respite care, but need much more in order to have regular recovery periods as a family, and to maintain their mental health.

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