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Colin Farrell opens up for the first time about life with his 20-year-old son, James, who has a rare debilitating disorder called Angelman syndrome and why he's starting a foundation to help adult children with similar disabilities prepare for greater independence. The Colin Farrell Foundation will provide support for adult children who have intellectual disability through advocacy, education and innovative programs.
Colin Farrell opens up for the first time about life with his 20-year-old son, James, who has a rare debilitating disorder called Angelman syndrome and why he's starting a foundation to help adult children with similar disabilities prepare for greater independence. The Colin Farrell Foundation will provide support for adult children who have intellectual disability through advocacy, education and innovative programs.
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00:00I'm very private, I've never had crews within our home, it's a very safe space but I have to,
00:06or choose to believe that if James knew that doing this could help families and could help
00:11other children and young adults who live with special needs, James would say,
00:14Dad what are you talking about, why are you even asking me, it's a no-brainer.
00:21James was very silent, very silent baby, he didn't coo, he didn't make any sounds at all.
00:26I just thought I'd hit the lottery, I thought I'd have a chill child who's not going to keep
00:30me up at night. He'd cry if he was upset but more than the crying it was just the constant
00:37adaptation to the idea of sound and encroaching language that a child goes through as a
00:43course of their natural evolution and there was none of that. But I didn't know that at the time,
00:49as I said I thought he was just a chill baby and anything but chill, you can hear him.
00:55But then he didn't, yeah he just wasn't hitting benchmarks, he wasn't sitting up,
00:58he couldn't sit up, you'd sit him up and he'd fall over, he wasn't crawling,
01:03he couldn't stay up on his legs at all so we knew that something was up, developmental delays.
01:12I think he was a year and a half old maybe when he was diagnosed, we took him to get really checked
01:17out and because of certain things that he was displaying he was diagnosed as having cerebral
01:22palsy and it was at the time, it probably still is but in less measure, it was a common misdiagnosis
01:31because it shared a lot of the same presentations, a lot of the same characteristics and it wasn't
01:37until he was about two and a half years old that a doctor, another doctor, pediatric neurologist,
01:43spent a little bit of time with him and saw that James, one of the characteristics of Angelman
01:48Syndrome is outbreaks of laughter, they call it inappropriate outbreaks of laughter but I don't
01:52know if there is such a thing as inappropriate outbreak of laughter if it comes from a sincere
01:56place and it lacks malice, I've just obviously qualified it greatly so maybe there is but
02:03but the doctor saw that James was laughing a lot in the office and he was also doing this
02:08movement a lot with his hands but this pediatric neurologist took a look at James and said to James
02:12and mom has he been tested for Angelman Syndrome and Kim said what's that? Very few people knew
02:20about it at the time and the doctor said well let me just do a genetic test, a blood test, we can
02:25just do a genetic mapping and we'll see and it came back positive so at least we had one of the
02:29biggest things, obviously one of the biggest issues and one of the most significant moments
02:35you can experience as a child who has developmental disability or delay is getting a diagnosis because
02:42then if you get a diagnosis you can zero in, there are usually people you can find whether it's a
02:47community just emotionally to lean into so you feel less alone in your struggles or medical
02:53professionals who can actually and physical therapists who can actually and people who can
02:57have a specific system with which they can present to your child, present to you and then help your
03:04child reach their potential so getting the diagnosis I remember the first two questions I
03:09asked at the time were what's the life expectancy and how much pain is involved and the doctor said
03:16life expectancy as far as we can tell is the same for you and for me and pain no but it's a seizure
03:23condition that was one of the big things and it's one of the things that parents struggle with
03:27greatly is that our children with Angelman's have seizures. James had plenty of seizures back in the
03:33day, I've been in the back of ambulances, I've been in the hospital with him, thankfully he hasn't had
03:37one in 10 or 11 years which is amazing.
03:42My god, James's first steps, I'll never forget James's first steps, two weeks short of his fourth birthday
03:48two weeks short of his fourth birthday and it was, it was, we were in the house we lived in at the time
03:55and Debra who's amazing who was here yesterday, I mean James's team as I say they've been in his
04:01life for 18 years, they love him so much. Debra came upstairs and I knew that they were working
04:06on walking and she came upstairs and she said James has something to show you and she said go
04:10over there and I stood over there and she had him and she let him go and he just came.
04:17It was very, it was, I mean it was so profound, I mean yeah it was magic, I mean I'll just, I'll
04:21never forget and just the face of determination on him as he just walked towards me you know and
04:26he took like six steps and I burst, burst into tears, it was amazing you know he's just short
04:31of his fourth birthday because a lot of our, a lot of parents are told you know your child's
04:36probably not going to walk and there are many children and young adults with Angelman syndrome
04:40who are wheelchair bound and there are other children you'll see who run around as if there
04:45wasn't a single you know chromosomal issue in their body at all and James is somewhere kind
04:52of in the middle of that field but yeah that was, I mean if you're, first steps are always a
04:57significant thing, they're spoken about you know a father or mother misses the first steps, they're
05:01pissed off for the rest of their lives, you know it's a really, really powerful benchmark
05:06you know for us bipedal creatures and, and to be told that he may never walk and see those
05:11first steps was just, it was just, I'll never forget it, it was so overwhelmingly beautiful.
05:19A typical day with James is not working, we'll just hang out, we'll play ball, swim in the pool,
05:25he loves movies, we'll watch movies, go out and get a cheeseburger, he loves his in and out burgers
05:30and he spends a lot of time with his, his partner in crime slash carer slash buddy slash person
05:39Damon who, because I work I've had, I've had another point of my good fortune, I've had live-in care
05:46so you know I can move freely and work and, and I think it's also been great for James because
05:54it gives him again that autonomy, he knows I'm here, we've love-ins and cuddles all day long
06:01and then he goes out and he goes to the beach and he goes to Universal Studios and
06:05he's a good life James, yeah he's a happy young man I'm glad to say.
06:13I'm proud of him every day because I just think he's, I just think he's magic,
06:16do you know what I mean, I'm, I mean I'm proud of both my boys, I've been blessed to have two
06:20really, really fine young men in my charge, I'm not even joking, every day I just think
06:26they're just magic, both of them, I just adore them and I'm just proud of the kind of fellas
06:29they are and I don't want to be willy-nilly if anyone's watching this and just like oh everything
06:33my children does is perfect and I just tell them they're perfect all the time, no we have rage and
06:37arguments here, we have disagreements and there's stuff that happens that's not cool and I say it's
06:41not cool and I try and give context for why I think it's not cool, but not that regularly,
06:49they're just really good dudes, I have two really good dudes and yeah James is, I mean he, he works
06:55harder than I've ever had to work on myself, you know, like he really does, take James sometimes
07:0390 seconds to take a t-shirt off, but he can take the t-shirt off, but it just, you just,
07:07you sit it out with him, his socks, you know, that's a whole thing, all these things are huge,
07:13huge achievements and so if anything, you know, he also gifts me with the, with the ability to
07:19look at the human being and the human body and, and life as a, as a marvel because I see how much
07:24he struggles with things that I would never have given a second's thought to,
07:28that I would just, like many of us, take for granted, you know.
07:35What would I say I'm most grateful for? I think I'll steal Jamie Lee Curtis's answer and say
07:42my sobriety in a way. Everything is magnified when you have a child with special needs, you know,
07:46you're, you're even more aware that your child really needs you around and is going to need
07:50a lot of help and a lot of support, so James was about two when I got, when I got clean,
07:54when I got sober and he was a big, big part of me putting the bottle down, you know,
07:59big part of it because I just, I was in no condition to be a friend, never mind a father
08:06of a child with such exacting needs and so if it wasn't for my sobriety, I wouldn't be able to be
08:13there for James and enjoy in the marvel of his life and support him in the way that I feel that
08:19I can. I don't want to paint a picture either that I'm a perfect dad, I may f*** up left,
08:24right and centre, but at least, you know, you have to be present to f*** up, so I'm, I'm around,
08:29but, but yeah, it's, it's neck and neck and they're kind of very conjoined, you know,
08:36my sobriety and then obviously the two, the two children that I, that I have,
08:40James and Henry are the two greatest, I want to say prides of my life, because pride,
08:45pride's a funny one, but I just, yeah, they, they are the, the aspects of my life and the,
08:55the presences within my life that I'm most grateful for.
09:01For years, I've wanted to do something in the realm of providing greater opportunities for
09:09families who have a child with special needs to receive the support that they deserve to receive
09:17and basically the assistance in life, in all areas of life, whether it's education, whether
09:23it's intervention, therapeutics, social environments that their child can feel like
09:33they belong within and just so that families who have a child with special needs can, can find
09:40a world of meaning and a life of connection for their children, you know. I obviously have a
09:45certain amount of means having had a career in film for 20 plus years now and, and we still struggle
09:54with finding the kind of support that James deserves and should rightfully have and particularly
09:58up until, there are support systems in place across the country and it varies state to state,
10:03but once your child turns 21, they're kind of on their own. All the, all the safeguards that are
10:07put in place, all the inclusive programs, special ed classes, that all kind of goes away once your
10:14child is 21 and so you're left with a young adult who should be an integrated part of our
10:21modern society here and very much more often than not is left behind and so families struggle and
10:27so James is of an age now, I suppose the reason why we're establishing the foundation now is that
10:32James is of an age, he's 20, he's had an extraordinary 20 years, he works incredibly
10:36hard to achieve the most quote-unquote menial of things, the most, the most typical of things,
10:43benchmarks that we all experience as typical human beings who don't have any cognitive issues or
10:49developmental delays. James has fought very hard to achieve certain benchmarks and he's done
10:54incredible and he's a really well-adjusted, really happy young man, he's extraordinary,
11:00but now we're looking for the, we're looking towards the rest of his life, what's the next
11:03chapter of James's life look like because my fear would be, you know, God forbid if and when
11:11something happens to James's mother or to me that James would be 30 and 40 and then he would have to
11:17go in somewhere into some kind of institute or some kind of residential care at 30 and 40 and
11:22there'd be nobody there to call over and to take him out and to have lunch and all that so, but
11:26there's very, very few places and so I want to change that, I want to be a part of, with a great
11:30team we have behind this foundation already and particularly Paula Evans out of Chicago who's
11:36been a friend of mine for 15 years, she's just got an engine like you wouldn't believe and she is,
11:41she's on the board as well so we're just, over time, I don't know, it's early days like this is
11:45the first time I've spoken about it and obviously the only reason I'm speaking about it is I can't
11:49ask James if he wants to do this, I can't ask my son, I have to make a decision called based on
11:55knowing James's spirit and knowing what kind of young man he is and the kind of goodness that he
12:01has in his heart and he's bold as brass as well and he's cheeky as they come but he's just a
12:05damn fine young man and hopefully over time, over the years I hope, through funding and through
12:11community involvement we want to take a good look at residential potential for families
12:19with young adults who are ready to go out into the world and have a greater sense of community
12:22and connection. My initial dream was to create a camp, you know, something in the vein of what
12:32beautiful Paul Newman did, you know, and Paul's camp, the hole in the wall gang,
12:38that's self-generating now as far as budget and finance goes because he made those lovely
12:43pasta sauces and those popcorn, microwave popcorns and things so I had an idea for a camp that would,
12:49you know, it would open in the spring and it would operate in the spring and the summer and
12:53the fall and then it would close for the winter for repairs. In my mind's eye I see anywhere between
12:5830 and 80 acres and there would be freestanding chalets, there would be outdoor cinema screen,
13:04there would be a rec room, there would be a swimming pool outside, there would be a couple of
13:11little freestanding wooden massage huts that the parents could go and they could have a little bit
13:15of R&R. Parents of children with special needs, they find it hard to do nice things for themselves,
13:22you know, and you can guess why, they feel that they just need to just, it's so all-encompassing,
13:27it's all-encompassing being a parent of a typical child but to have a child who has such profound
13:31struggles as many of our children do, it's so all-encompassing that if you do something nice
13:36for yourself or give yourself a massage or go on a little two-day road trip with your husband or
13:40your wife, you feel like you're being irresponsible, you feel like you're neglecting your child more
13:44than if you had a typical child, it's just the way it goes because your child's needs are so
13:48pronounced and because you feel a sense of guilt as well, it's very complicated like that you brought
13:52your child into the world that somehow it's your fault that your child was born with whatever the
13:56particular condition may be and so the thing would be to bring parents and the children, both the
14:02child with special needs and one or two typical children, brothers, sisters, and bring them all
14:07to the camp for a week so that the parents could have a good time, they could get massages, they
14:11could splash about, they could sit in the jacuzzi and their child would be doing activities during
14:14the day and then at night we'd all come together and there'd be meals shared and there'd be cinemas
14:18out under the stars and all that kind of stuff so that was initially what I spoke to Paula about
14:22and then Paula was the one that said, well do you think it's time to do the foundation? So building
14:27a summer camp would be a part of the foundation as well, that'd be a big one for me to leave
14:31behind and it's all because of James, you know, it's all in James's honour.
14:34It's a terrifying thought that I'll miss the last, you know, 40 years or 50 years of his life
14:43yeah, just because I won't be there to shepherd and to protect, but what would the perfect
14:53you know, just a life of connection and so James's last 20, 30, 40, 10 years of James's life, he'll be
15:02somewhere where he feels like he belongs, where he feels like he's safe and where he can garden
15:07and watch movies and swim in the pool and go out to the beach and just have a full and meaningful
15:12and connected life, you know, that'd be fantastic.
15:22That'd be the dream.