Thursday 22 February 2018

'He pinned my arms down and he strangled me' - Mum of Jacob (8) who lives with severe autism says the state have abandoned her family

Edel and Anton Dooley spoke on Today with Sean O'Rourke about their son Jacob.
Edel and Anton Dooley spoke on Today with Sean O'Rourke about their son Jacob.
Patricia Murphy

Patricia Murphy

The parents of an eight-year-old boy who lives with severe autism said their family has been "abandoned" by the government, who have failed to provide respite and adequate support to their family in crisis.

Edel and Anton Dooley's son Jacob (8) lives with severe autism and is non-verbal and doubly incontinent. Jacob also lives with pervasive developmental disorder, mixed expressive receptive language disorder and intellectual disability with sensory issues yet to be diagnosed.

The Dooleys from Swords in Dublin said their family has reached breaking point and is struggling to cope with Jacob's violent outbursts, which are having a serious impact on the family's two other children and mum Edel, his main caregiver.

Speaking on RTE Radio One's Today with Sean O'Rourke, Edel and Anton said the family had previously been assessed by the HSE who determined that Jacob needed two to one support at all times to ensure his own safety and that of the people around him. While the body provides several hours of support as part of a home care package, it does not provide the necessary support to ensure that Jacob receives two to one support at all times.

Jacob's father Anton said: "The HSE actually assessed us when they were getting the home care package in place. Part of their assessment was that Jacob required two to one support at all times from caregivers. They gave us five working hours of actual support.

"They've acknowledged that Jacob needs two to one support but they're still happy for Edel, when I'm at work and there's no carers there, to look after Jacob and another two children alone. They quite clearly know what the situation is but they don't have a response for us.

"It's more than shameful. It's willful neglect because they know it's happening," he said.

The family have said their home has become a battleground due to Jacob's violent behaviours and his mum Edel said her son is now strong enough to be a threat to his own safety and that of his family members.

Speaking on the programme, Edel said: "Over the Christmas holidays Anton took our two other children to visit family in Donegal to give them a well deserved break. I was strangled by Jacob when we were playing. He pinned my arms down with his knees and he strangled me to the point where I almost passed out. He also pushed me down the stairs. He doesn't do it in anger. He has no safety awareness. We were playing when it happened. We were playing clap hands, his favourite game.

"I have no control over what he's doing. He's very tall, he's very strong. He's very healthy and it's very scary."

The couple is also concerned that the situation is having an impact on their other children, who rarely get a relief from the difficult situation, as the family has not been allocated respite.

"We have two other children as well and he has hurt them," said Anton.

"My daughter in particular who is smaller than him. He's ceased on her a few times, he's bit her on the face, he's bit her on the back. He's left marks on her. Alma is now seven but that's been going on for a couple of years. Matthew less so because he's a little bit stronger to fend him off. Neither want to be in the same room as Jacob. Never. They come home from school and go straight up to their rooms and lock themselves in.

"We know he's going to hurt us again, that's every day. Everyday one of us has scratches and bite marks. Some of it is from just restraining him. My fear is that in restraining him to keep my other kids safe, to keep me safe, that I'm actually afraid that I'll hurt him because it will take me that much effort to keep him down."

The family said they feel "alone and abandoned" by the government, after seeking the help of several politicians including Minister for Health Simon Harris, who has not responded. The Dooleys feel that they have received the same "template" responses from Ministers Katherine Zappone and Finian McGrath as many other families in similar positions around the country have received.

Edel said: "I sent them photographs of my injuries. Minister Simon Harris' office - nothing. Minister Katherine Zappone's office acknowledged my communication and promised to raise the matter with Finian McGrath. Finian McGrath's office - the minister responded immediately and wanted to help and asked for more information including Jacob's PPS number. I provided the information and I received a reply from someone in Finian McGrath's office stating that he's prohibited from intervening in individual cases.

"We now know that this is a boiler plate response that has been sent to families up and down the country from both this Minister and other Ministers' offices. The Office of An Taoiseach acknowledged my communication and referred the matter to the offices of Finian McGrath and Katherine Zappone who either can't help or don't know who to send the referrals to."

Mum Edel became emotional on the programme and said the situation is having an impact on her mental health.

"I feel alone, abandoned by our state and fearful for our future. Jacob can't go on holidays so we don't get a holiday. To visit Anton's family in Donegal, he will take the other two children. I'll get a few hours of home care in but bedtime in particular is a very difficult time of the day. I worry that if he knocks me unconscious or pushes me down the stairs what will happen. Will he be free then to roam around the house and hurt himself."

"My mental health is suffering. Firstly I want to explain that there's a very big difference between wanting to die and being suicidal. Very clear, psychological distinction. 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. It's so hard to see him suffer because I'm not mentally strong enough to keep going the way things are going," she said.

Dad-of-three Anton said every day he comes home from work to a "battle field".

"The kids are in lock down in their rooms, Jacob's upset about something, Edel's upset. I get to get away from that with work but Edel doesn't get to get away from that particularly during the summer."

The family, who lived abroad for four years before moving home to Ireland, said the standard of support here is incomparable to that in Canada.

Edel said: "We lived in Canada for four years where the services are extremely different. It took a social worker a whole year to convince us to give respite a try because we love our children and we didn't want our son to feel like we were abandoning him.

"But we eventually decided that we couldn't manage and we'd give it a go. It worked so well for us. It kept our family as a unit. It allowed us to recover mentally, emotionally and physically for a few days a week. It helped us be able to care for our three children in a loving home environment for the other days that he was home.

"Our son is not the problem here. More and more children are being diagnosed with complex conditions. The problem is that the supports are not there. The state has let it fall on the head of some charities, some unfunded, to take up the slack."

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