Colin Farrell Talks Openly About His Angelman Syndrome-Affected Son
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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 a 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, you know, I thought I'd have a chill child,
00:29he's not going to keep me up at night.
00:33He'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 course
00:43of 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, chill baby and anything but chill, you can hear him.
00:55But then he didn't, yeah he wasn't, 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
01:17checked out and because of certain things that he was displaying he was diagnosed as having
01:22cerebral palsy and it was at the time, it probably still is but in less measure, it was a
01:29common misdiagnosis because it shared a lot of the same presentations, a lot of the same
01:35characteristics and it wasn't until he was about two and a half years old that a doctor, another
01:40doctor, paediatric neurologist spent a little bit of time with him and saw that James, one of the
01:47characteristics of Angelman syndrome is outbreaks of laughter, they call it inappropriate outbreaks
01:52of laughter but I don't know if there is such a thing as an inappropriate outbreak of laughter
01:55if it comes from a sincere place and it lacks malice, I've just obviously qualified it greatly
02:01so maybe there is but the doctor saw that James was laughing a lot in the office and he was also
02:06doing this movement a lot with his hands but this paediatric neurologist took a look at James and
02:12said to James' mom has he been tested for Angelman syndrome and Kim said what's that?
02:19Very few people knew about it at the time and the doctor said well let me just do a genetic
02:24test, a blood test, we can just do a genetic mapping and we'll see and it came back positive
02:27so at least we had one of the biggest things, obviously one of the biggest issues and one of
02:32the most significant moments you can experience as a child who has developmental disability or delay
02:40is getting a diagnosis because then if you get a diagnosis you can zero in, there are usually
02:45people you can find whether it's a community just emotionally to lean into so you feel less
02:50alone in your struggles or medical professionals who can actually and physical therapists who can
02:56actually and people who can have a specific system with which they can present to your child,
03:02present to you and then help your child reach their potential so getting the diagnosis I remember
03:08the first two questions I asked at the time were what's the life expectancy and how much pain is
03:14involved and the doctor said life expectancy as far as we can tell is the same for you and for me
03:20and pain no but it's a seizure condition that was one of the big things and it's one of the
03:25things that parents struggle with greatly is that our children with Angelman's have seizures. James
03:31had plenty of seizures back in the day, I've been in the back of ambulances, I've been in the hospital
03:35with him, thankfully he hasn't had one 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
03:47birthday, two weeks short of his fourth birthday and it was, it was, we were in the house we lived
03:53in at the time and Debra who's amazing who was here yesterday, I mean James's team as I say
04:00they've been in his life for 18 years, they love him so much. Debra came upstairs and I knew that
04:06they were working on walking and she came upstairs and she said James has something to show you
04:10and she said go over there and I stood over there and she had him and she let him go and he just
04:15came. It was very, it was, I mean it was so profound, I mean yeah it was magic, I mean I'll
04:21just, I'll never forget and just the face of determination on him as he just walked towards
04:26me you know and he took like six steps and I burst, burst into tears, it was amazing you know
04:30he's just short of his fourth birthday because a lot of our, a lot of parents are told you know
04:36your child's probably not going to walk and there are many children and young adults with Angelman
04:40syndrome who are wheelchair bound and there are other children you'll see who run around as if
04:45there wasn'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
04:58significant thing, they're spoken about, you know a father or mother misses the first steps,
05:01they're pissed 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 first
05:11steps was just, it was just, I'll never forget it, it was so overwhelmingly beautiful.
05:19A typical day with James, I'm not working, we'll just hang out, we'll play ball,
05:24swim in the pool, he loves movies, we'll watch movies, go out and get a cheeseburger, he loves
05:29his In-N-Out burgers, he spends a lot of time with his, his partner in crime, slash carer,
05:37slash buddy, slash person, Damon, who because I work I've had, I've had another point of my good
05:44fortune, I've had live-in care so you know I can move freely and work and, and I think it's also
05:52been great for James because it gives him again that autonomy, he knows I'm here, we've love-ins
05:59and cuddles all day long and, and then he goes out and he goes to the beach and he goes to Universal
06:03Studios and he'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, do you know what
06:16I mean, I mean I'm proud of both my boys, I've been blessed to have two really, really fine
06:21young men in my charge, I'm not even joking, every day I just think they're just magic,
06:26both of them I just adore them and I'm just proud of the kind of fellas they are and I don't want
06:30to be willy-nilly if anyone's watching this and just like, oh everything my children does is
06:33perfect and I just tell them they're perfect all the time, no we have rage and arguments here,
06:38we have disagreements and there's stuff that happens that's not cool and I say it's not cool
06:42and I try and give context for why I think it's not cool, but not that regularly, they're just
06:49really good dudes, I have two really good dudes and yeah James is, I mean he works harder than
06:57I've ever had to work on myself, you know like he really does, take James sometimes 90 seconds to
07:04take a t-shirt off, but he can take the t-shirt off, but it just, you just, you sit it out with
07:08him, his socks you know, that's a whole thing, all these things are huge, huge achievements
07:14and so if anything you know, he also gifts me with the, with the ability to look at the human
07:20being and the human body and and life as a, as a marvel because I see how much he struggles with
07:25things that I would never have given a second's thought to, that I would just like many of us
07:30take for granted you know. What would I say I'm most grateful for? I think I'll steal
07:39Jamie Lee Curtis's answer and say my sobriety in a way. Everything is magnified when you have a
07:44child with special needs, you know, you're even more aware that your child really needs you around
07:49and is going to need a lot of help and a lot of support, so James was about two when I got,
07:52when I got clean, when I got sober and he was a big, big part of me putting the bottle down,
07:58you know, a big part of it because I just, I was in no condition to be a friend, never mind a
08:05a father of a child with, with such exacting needs and so if it wasn't for my sobriety I wouldn't
08:12be able to be there for James and enjoy in the marvel of his life and support him in the way
08:18that I feel that I can. I don't want to paint a picture either that I'm a perfect dad, I may
08:24up left, right and center but at least you know, you have to be present to 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, my
08:36sobriety and then obviously the two, the two children that I, that I have, James and Henry
08:41are the two greatest, I want to say prides of my life, pride, pride's a funny one but I just,
08:48yeah, they, they are the, the aspects of my life and the,
08:53the 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, support that they deserve
09:16to receive and basically the assistance in life, in all areas of life, whether it's
09:22education, whether it's intervention, therapeutics, social environments that their child
09:32can feel like they belong within and just so that families who have a child with special needs can,
09:38can find a world of meaning and a life of connection for their children, you know.
09:44I obviously have a certain amount of means having had a career in film for 20 plus years now and,
09:51and we still struggle with finding the kind of support that James deserves and should rightfully
09:57have and particularly up until there are support systems in place across the country and it varies
10:02state to state but once your child turns 21 they're kind of on their own, all the, all the
10:07safeguards that are put in place, all the inclusive programs, special ed classes, that all kind of
10:13goes away once your child is 21 and so you're left with a young adult who should be an integrated
10:20part of our modern society here and very much more often than not is left behind and so families
10:27struggle and so James is of an age now, I suppose the reason why we're establishing the foundation
10:31now is that James is of an age, he's 20, he's had an extraordinary 20 years, he works incredibly hard
10:36to 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 right, we're looking towards the rest of his life, what's the
11:03next chapter of James's life look like because my fear would be, you know, God forbid if and
11:11when something happens to James's mother or to me that James would be 30 and 40 and then he would
11:17have to go 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 call 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
12:48a camp that would, you know, it would open in the spring and it would operate in the spring
12:53and the summer and the fall and then it would close for the winter for repairs. In my mind's
12:56eye I see anywhere between 30 and 80 acres and there would be freestanding chalets, there would
13:03be outdoor cinema screen, there would be a rec room, there would be a swimming pool outside,
13:09there would be a couple of little freestanding wooden massage huts that the parents could go
13:14and they could have a little bit of R&R. Parents of children with special needs, they find it hard
13:20to do nice things for themselves, you know, and you can guess why, they feel that they just need
13:25to just, it's so all-encompassing, it's all-encompassing being a parent of a typical
13:29child but to have a child who has such profound struggles as many of our children do, it's so
13:33all-encompassing that if you do something nice for yourself or give yourself a massage or go on
13:38a little two-day road trip with your husband or your wife, you feel like you're being irresponsible,
13:42you feel like you're neglecting your child more than if you had a typical child, it's just the way
13:45it goes because your child's needs are so pronounced and because you feel a sense of guilt as well,
13:50it's very complicated like that you brought your child into the world, that somehow it's your fault
13:54that your child was born with whatever the particular condition may be and so the thing
13:59would be to bring parents and the children, both the child with special needs and one or two
14:05typical children, brothers, sisters, and bring them all to the camp for a week so that the parents
14:09could have a good time, they could get massages, they could splash about, they could sit in the
14:12jacuzzi and their child would be doing activities during the day and then at night we'd all come
14:16together and there'd be meals shared and there'd be cinemas out under the stars and all that kind
14:20of stuff so that was initially what I spoke to Paula about and then Paula was the one that said
14:24well do you think it's time to do the foundation so building a summer camp will be a part of the
14:29foundation as well, that'll be a big one for me to leave behind and it's all because of James,
14:33you know, it's all in James's honour.
14:39It's a terrifying thought that I'll miss the last, you know, 40 years or 50 years of his life
14:48yeah just because I won't be there to shepherd and to protect but what would the perfect
14:57you know just a life of connection and so James's last 20, 30, 40, 10 years of James's life he'll be
15:06somewhere where he feels like he belongs, where he feels like he's safe and where he can garden
15:11and watch movies and swim in the pool and go out to the beach and just have a full and
15:16meaningful and connected life, you know, that'll be that'll be the dream.
15:26you