Colin Farrell Just Explained The Poignant Reason Why He Wants To Put His Son With Angelman Syndrome In A Care Facility
Angelman syndrome is a rare genetic disorder that causes intellectual and developmental delay, and James was diagnosed at 4 years old.
Last year, Colin decided to offer a glimpse of their life to the public in a bid to raise awareness for his new venture, the Colin Farrell Foundation. Speaking to People, Colin explained that in the United States, the cut-off age for the support systems provided for families with children who have additional needs is 21 — which is what inspired him to launch the foundation, which provides support for adults who have intellectual difficulties.
'It's a terrifying thought that I'd miss the last 40 years of 50 years of his life because I won't be there to shepherd and to protect,' Colin said of the stark likelihood that James will outlive him and Kim. He added that his hope for James would be 'a life of connection' and that once his parents are gone, James will 'be somewhere he feels like he belongs, where he feels safe.'
In fact, Colin noted that he has an intense fear over what the future holds for his son as he admitted that even as a wealthy Hollywood actor, he still struggles to find the help that James needs. He shared: 'My fear would be, God forbid, if and when something happens to James's mother or me, James would be 30 or 40, and then he'd have to go in somewhere. Into some kind of institute or some kind of residential care at 30 or 40, and there'd be nobody there to call over, and take him out, and have lunch and all that.'
'I want the world to be kind to James,' he concluded at the time. 'I want the world to treat him with kindness and respect.'
And Colin — who also has a 15-year-old son called Henry — has reflected some more on his concerns for James's future in a new interview with Candis magazine, where he explained his and Kim's decision to settle James in a care facility while they are still technically able to look after him themselves.
He said: 'It's tricky, some parents will say: 'I want to take care of my child myself.' And I respect that. But my horror would be... What if I have a heart attack tomorrow, and, God forbid, James' mother, Kim, has a car crash and she's taken too — and then James is on his own. Then he's a ward of the state and he goes where? We'd have no say in it.'
'And one thing I can say about James is that he knows when somebody wants to be with him, and he knows when somebody's just supposed to be with him,' Colin went on. 'So, if he has a carer or a teacher or somebody who's doing physical therapy with him and they're not fully engaged and fully loving with him, he'll just switch off.'
'What his mother and I want is to find somewhere we like where he can go now, while we're still alive and healthy, that we can go and visit, and we can take him out sometimes,' Colin continued. 'We want him to find somewhere where he can have a full and happy life, where he feels connected. He needs a bigger life than we can afford him, by having a sense of community that he feels connected to, by going out in the van every day and going to the supermarket and doing the shopping together, by going to the beach, museums, movies, all that stuff. Just a connected life."
'It's been a struggle for us to find suitable residential care,' the actor added, referencing his decision to set up his own foundation. 'And in realizing that, I thought: 'If I'm having these difficulties, what about all the other families out there that don't have anything close to the means that I have?' I've always known I wanted to do something about this, but until now I've just been really self-centredly busy in raising my own two kids. But now, they're up and running and I feel I have a bit more space to do something. It's early days for the foundation yet, so we're still on baby steps."
Colin previously told People that James's additional needs are what motivated him to get sober in the mid-'00s, with the star renowned for his party boy past. He said at the time: 'James was about two when I got clean, when I got sober, and he was a big, big part of me putting the bottle down, a big part of it. Because I was in no condition to be a friend, never mind the father of a child which such exacting needs… If it wasn't for my sobriety, I wouldn't be able to be there for James and enjoy in the marvels of his life and support him in the way that I feel that I can.'
He also said that James has given him a newfound appreciation for the little things in life, explaining that while his son is able to complete everyday tasks, they tend to take him much longer.
Colin shared: 'It'll take James 90 seconds to take a T-shirt off, but he takes a T-shirt off; you sit it out with him. If anything, he also gifts me with the ability to look at the human being and the human body and life as a marvel, because I see how much he struggles with things that I'd never have given a second thought to, that many of us take for granted.'
Detailing their day-to-day life, Colin said that he and James, who is nonverbal, enjoy regular father-son activities together like playing ball, swimming, watching movies, and going out for a cheeseburger, and that James benefits from the fact that he has had the same live-in carer for 18 years.
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