Dads whose sons have complex needs speak out

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

For the dads of children with severe learning difficulties, life can often bring a lot of challenges.

BBC Spotlight has spoken to four dads of boys who all have a diagnosis of autism and a severe learning disability that can lead to upsetting and harmful behaviour to themselves and others.

They become bodyguards and protectors and in many cases face physical harm, and have called for more support and respite.

On Tuesday, a group of mums spoke out in a BBC Spotlight documentary about incredibly hard choices they have had to make when looking after sons with complex needs, often without any respite or support.

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

“I could be out of the room and the next second I’m being called by my daughter or my wife because he’s kicked off again. You have to put yourself physically between him and them and get them out of the road,” Mr Flannigan said.

“You think okay, at least I’m able to deal with this and it’s not my wife and it’s not my daughter that are getting hurt. But then you realise that they can’t be on their own with him,” he said.

“ They can’t spend that quality time without someone being there as a bodyguard.”

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

“It’s so simple, just splashing about in the water, playing with the waves pushing against you, he just loves that and he loves you to be there with him.”

Those moments are what all four dads call the “small wins”.

Frank Tipping’s 11-year-old son Theo can have great difficulty controlling his emotions, but there is another side to him.

“He is a gorgeous child. He is affectionate, he is warm. You can see he wants to belong everywhere,” Mr Tipping said.

“You can see him 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 those moments of struggle that can often escalate into distressed behaviour.

In the film, Mr Tipping often intervenes between Theo and his wife Julie, shielding her from the more harmful outcomes of Theo’s distress.

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

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

Mr Tipping admits he feels very guilty discussing Theo’s difficult episodes.

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

“ But I feel every time we articulate the problem it feels like betraying him.”

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

In the film Rudy bites and scratches his father’s hands during an outburst as Mr Bell is trying to de-escalate things.

“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 other people. Or himself. When 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 the reality and how they are struggling.

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

“We’re physically drained, mentally drained. I’m still trying to hold down a job but I’ve had to drop it down to two days.”

Social services have assessed all four boys should be getting regular overnight respite. That is where the children would go to a health trust facility and the families would get a break.

There are no spaces currently available in the Belfast and South Eastern Trust.

Mr Bell said respite was invaluable.

“It made a hell of a difference to everybody in the family. I mean everybody. Because you were getting a bed for the night, you were getting a sleep for the night.”

Mr Bell has had medical issues this year including very high blood pressure: “It’s got to the stage where I’m running on empty.”

Danny Miller’s dad Steven has changed jobs to be able to spend more time at home.

“I used to be a mechanic and now I work for the Roads Service and lost almost half my wages,” Mr Miller said.

“That’s something I’ve had to do to support my family.”

His wife Claire suffers quite significant injuries on a regular basis.

“I’m watching him attacking 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 caught in the middle what do you do?

“A lot of the time we’re lying on the floor trying to protect him from banging his head on the floor.”

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

The South Eastern Health Trust who look after Danny and Rudy’s care said it would not comment on their cases.

It said it understood the pressure on families but it could not offer respite because beds were being used by children who need long-term placement.

It added that it hoped future funding would be made available.

The Belfast Health Trust who are responsible for Eoin and Theo’s care said it was very sorry that it was unable to offer overnight breaks, but that the Trust was exploring ways of reintroducing them.

Health Minister Mike Nesbitt said the current situation was unsustainable, adding that he was determined to see “urgent improvements”.