Fathers whose sons have complex needs are speaking out

“I’m supposed to be her protector, but I’m also supposed to be his protector, and if you’re stuck in the middle, what do you do?

For fathers of children with severe learning difficulties, life often presents many challenges.

BBC Spotlight spoke to four fathers of boys, all of whom have a diagnosis of autism and a severe learning disability, which can lead to worrying and harmful behavior for themselves and others.

They become bodyguards and protectors and in many cases are physically injured and demand more support and protection.

On Tuesday, a group of mothers spoke in a BBC Spotlight documentary about the incredibly difficult decisions they had to make when caring for their sons with complex needs, often without respite or support.

Séamus Flannigan is father to 16-year-old Eoin.

“I could leave the room and the next second I get a call from my daughter or my wife because he’s started again. “You have to physically get between him and her and get them out of the way,” Mr. Flannigan said.

“You think, okay, at least I can handle it, and it’s not my wife and it’s not my daughter that’s getting hurt. But then you realize they can’t be alone with him,” he said.

“You can’t have this beautiful time without someone there as a bodyguard.”

One of the most touching scenes in the film is when the family is in a hydrotherapy pool with Eoin. The bond between father and son is clear.

“It’s so easy, just splashing around in the water, playing with the waves pushing against you, he just loves that and he loves it when you’re with him.”

All four fathers describe these moments as “small successes”.

Frank Tipping’s 11-year-old son Theo can have great difficulty controlling his emotions, but he also has another side.

“He is a beautiful child. He is loving, he is warm-hearted. You can see he wants to fit in wherever he is,” Mr Tipping said.

“You can see he’s struggling to figure things out, but it’s very difficult for him and it’s very difficult for us to understand what exactly it is that he needs.”

And it is these moments of struggle that can often lead to desperate behavior.

In the film, Mr. Tipping often intervenes between Theo and his wife Julie, protecting them from the worse consequences of Theo’s grief.

“Ultimately you’re approaching a situation where you could get hurt, you know, and that’s really hard to imagine,” Mr. Tipping said.

“He’s getting bigger and stronger and I’m not sure we’re ready for it.”

Mr Tipping admits he feels very guilty when talking about Theo’s difficult episodes.

“It’s not Theo’s fault. “Theo is a great boy, he’s a godsend, he’s a blessing,” he said.

“But I feel like every time we articulate the problem, it feels like he’s being betrayed.”

John Bell’s 15-year-old son Rudy is strong and his outbursts have resulted in several injuries.

In the film, Rudy bites and scratches his father’s hands during a temper tantrum while Mr. Bell tries to de-escalate the situation.

“My hands are still black and blue and that was five or six weeks ago. And it’s hard because you don’t want him to hurt you or anyone else. Or himself. If Rudy gets you, he gets you good, you can really feel it,” he said.

Mr Bell said he and his wife Carly felt taking part in the film was a last resort – they wanted to show reality and its difficulties.

“If people see this, and maybe professionals see it, maybe they can see what me and my family are going through,” he said.

“We are physically and mentally exhausted. I’m still trying to nail down an assignment, but I had to shorten it to two days.”

Social services have determined that all four boys should receive regular overnight rest breaks. There the children would go to a health facility and the families would be given a break.

There are currently no places available at the Belfast and South Eastern Trust.

Mr Bell said a reprieve would be invaluable.

“It has made a massive difference to everyone in the family. I mean everyone. Because you got a bed for the night, you slept for the night.”

Mr Bell has had medical problems this year, including very high blood pressure: “It’s gotten to the point where I’m running on empty.”

Danny Miller’s father Steven changed jobs so he could spend more time at home.

“I used to be a mechanic and now I work for the road service and have lost almost half of my wages,” Mr Miller said.

“This is something I had to do to support my family.”

His wife Claire regularly suffers serious injuries.

“I watch him attack her and there’s not really anything I can do,” he said.

“I’m supposed to be her protector, but I’m also supposed to be his protector and you’re stuck in the middle, what are you doing?

“Most of the time we lie on the floor and try to keep him from hitting his head on the floor.”

Mr. Miller says he is devoted to his son and believes regular rest breaks would help the whole family.

The South Eastern Health Trust, which is caring for Danny and Rudy, said it would not comment on their cases.

It said it understood the pressure placed on families but could not offer any relief as the beds were being used by children requiring long-term accommodation.

She added that she hoped future funding would be made available.

Belfast Health Trust, which is responsible for Eoin and Theo’s care, said it was very unfortunate that it was unable to offer overnight breaks, but the trust was looking at options to reintroduce them.

Health Minister Mike Nesbitt said the current situation was untenable, adding he was committed to making “urgent improvements”.