Colin Farrell Opens Up About His Son With Angelman Syndrome | PEOPLE

I'm very private um I've never had Crews within our home it's a very safe space but I have to or choose to believe that if James knew that doing this could help families and could help other children and young adults who live with special needs James would say Dad what are you talking about why you even asking me it's a no-brainer James was a very silent very silent baby he didn't coup he didn't make any sounds at all I just thought I'd hit the lottery you know I thought I have a chill child who's not going to keep me up at night he'd cry if he was upset but more than the crying was just a constant um adaptation to the idea of sound and encroaching language that a child goes through as a course of their Natural Evolution um and there was none of that but I didn't know that at the time it just as I said I thought he was just a chill chill baby and uh anything but chill you can hear him but then he didn't yeah he wasn't he just wasn't hitting benchmarks he wasn't sitting up he couldn't sit up he'd sit him up and he and fall over he wasn't crawling um he couldn't stay up on his legs at all so we knew that something was up developmental delays I think he was a year and a half old maybe when he was diagnosed we took him to get really checked out and because of certain things that he was displaying he was diagnosed as having cerebal paly and it was at the time it probably still is but in less less measure it was a common misdiagnosis because it shared a lot of the same presentations a lot of the same characteristics and it wasn't until he was about 2 and a half years old that a doctor another doctor pediatric neurologist spent a little bit of time with him and saw that James um one of the characteristics of Angelman syndrome is outbreaks of laughter they call it inappropriate outbreaks of laughter but I don't know if there is such a thing is inappropriate outbreak of laughter if it comes from a sincere place and it lacks malice I've just obviously qualified it greatly so maybe there is but um but the doctor saw that James was laughing a lot in the office and he was also doing this movement a lot with his hands but this pediatric neurologist took a look at James and said to James's mom has he been tested for Angelman syndrome and Kim said what's what's that very few people knew about it at the time and um and the doctor said well let me just do a genetic test the blood test we can just do a genetic mapping and we'll see and it came back positive so at least we had one of the biggest things obviously one of the biggest issues and and one of the most significant uh moments you can experience as a child who has developmental disability or delay is getting a diagnosis because then if you get a diagnosis you can zero in there are usually people you can find whether it's a community just emotionally to lean into so you feel less alone in your struggles or medical professionals who can actually and physical therapists who can actually and people who can have a specific um system with which they can present to your child present to you and then help your child reach their potential so getting the diagnosis I remember the first two questions I asked at the time were um what's the life expectancy and how much pain is involved and the doctor said life expectancy as far as we can tell is the same for you and for me and um pain no but it's a seizure condition that was one of the big things and it's one of the things that parents struggle with greatly is that our children with Angelman have seizures James had plenty of seizures back in the day I've been in the back of ambulances I've been in the hospital with him thankfully he hasn't had one in 10 or 11 years which is which is amazing my God James's First Steps I'll never forget james' First Steps two weeks short of his fourth birthday two weeks short of his fourth birthday and it was it was we were in the house we lived in at the time and Deborah um who's amazing who was here yesterday I mean James is team as to say they've been in his life for 18 years they love him so much Deborah came upstairs and I knew that they were working on walking and she came upstairs and she said James has something to show you and she said go over there and I and I stood over there and she had him and she let him go just it was very it was I mean it was so profound I mean it yeah it was magic I mean I just I'll never forget and there's the face of dir termination on him as he just walked towards me you know and he took like six steps and I burst burst into tears it was amazing you know he's just short of his fourth birthday cuz a lot of our uh a lot of parents are told you know your child's probably not going to walk and there are many children and young adults with Angelman syndrome who are wheelchair bound and there are other children you'll see who run around as if there wasn't a single you know chromosomal issue in their body at all um and James is somewhere kind of in the middle of that field but yeah that was I mean if you're first steps are always a significant thing they're spoken about you know a father or mother misses the first steps they're pissed off for the rest of their lives you know it's a really really powerful Benchmark you know for us bipedal creatures and and to be told that he may never walk and see those first steps was just it was just I I'll never forget it it was so overwhelmingly beautiful a typical David James is not working we'll just hang out we'll play ball swim in the pool he loves movies we watch movies goad and get a cheeseburger he loves his in Out Burgers um he spends a lot of time with his his partner in crime uh Slash career SL buudy slers Damon who um because I work I've had I've had another point of my good fortune I've had live in care so you know I can move freely and work and and uh I think it's also been great for James because it gives him again that autonomy he knows I'm here we love ins and Cuddles all all day long and uh and then he goes out and he goes to the beach and he goes to Universal Studios and he's a good life James yeah he's a happy young man I'm glad to [Music] say I'm proud of him every day cuz I just think he's I just think he's magic do you know what I mean I'm I mean I'm proud of both my boys I've been blessed to have two really really fine young men in my charge I'm not even joking every day I just think they're just magic both of them I just adore them and I'm just proud of the kind of as they are and I don't want to be willy-nilly if anyone's watching this and just like oh everything my children does is perfect and I just tell them they're perfect all the time no we have rage in arguments here we have disagreements and there's stuff that happens that's not cool and I say it's not cool and I try and give context for why I think it's not cool but not that regularly they're just really good dudes I have two really good dudes and yeah James is I mean he he works harder than I've ever had to work on myself you know like really does take James Sometimes 90 seconds to take a t-shirt off but he can take the T-shirt off but it just you just you sit it out with him his socks you know that's a whole thing all these things are huge huge achievements and so if anything you know he also gifts me with the with the ability to look at the human being and the human body and and life as a as a Marvel because I see how much he struggles with things that I would never have given a second's thought to that I would just like many of us take for granted you know what would I say I'm most grateful for I think I'll steal Jam Lee Curtis's answer and say my sobriety in a way everything is magnified when you have a child with special needs you know you're you're even more aware that your child really needs you around and is going to need a lot of help and a lot of support so James was about two when I got when I got clean when I got sober and he was a big big part of me putting the bottle down you know big part of it cuz I just I was in no condition to be a friend never mind a a father of a child with with such exacting needs and so if it wasn't for my sobriety I wouldn't be able to be there for James and enjoying the Marvel of of his life and support him in the way that I feel that I can I don't want to paint a picture either that I'm a perfect dad I make up left right and center but at least you know you have to be present to up so I'm I'm around but but um but yeah it's a it's neck and neck and they're kind of very conjoined you know my sobriety and then obviously the two the two children that I that I have James and Henry are the two greatest I want to say Prides of my life Pride Pride's a funny one but I just um yeah they they are the the aspects of my life and the the presences within my life that I'm most grateful for for years I've wanted to do something in the realm of um providing greater opportunities for families who have a child with special needs to receive the sport support that they deserve to receive and basically the assistance in life in all areas of life whether it's education whether it's intervention um uh Therapeutics um um social environments that their child can feel like they belong within and just so that families who have a child with special needs can can find a a world of meaning and a life of connection for their children you know um I obviously have a certain amount of means having had a career in film for 20 plus years now and and we still struggle in with finding the kind of support that James deserves and should rightfully have and particularly up until the are support systems in place across the country and it varies state to state but once your child turns 21 they're kind of on their own all the all the safeguards that are put in place all the inclusive programs special ed classes that all kind of goes away once your child is 21 and so you're left with a young adult who should be an integrated part of our modern society here and um very much more often than not is Left Behind and so family struggle and so James is of an age now I suppose the reason why we're establishing the foundation now is that James is of an age he's 20 he's had an extraordinary 20 years he works incredibly hard to achieve the most quote unquote menial of things the most the most typical of things benchmarks that we all experience as typical human beings who don't have any cognitive issues or developmental delays James has fought very hard um to achieve certain benchmarks and he's done incredible and he's a really well adjusted really happy young man he's extraordinary um but now we're looking for the we're looking towards the rest of his life what's the next chapter of James's life look like cuz my my fear would be you know God forbid if and when something happens uh to James's mother or to me that James would be 30 and 40 and then he would have to go in somewhere into some kind of Institute or some kind of Residential Care at 30 and 40 and there'd be nobody there to call over and to take them out and to have lunch and all that so but there's very very few places and so I I want to change that I want to a part of with a great team we have behind this Foundation already and particularly Paula Evans out of Chicago who's been a friend of mine for 15 years she's just got an engine like you wouldn't believe and she is um she's on the board as well so we're just over time I don't know it's early days like this is the first time I've spoken about it and obviously the only reason I'm speaking about it is I can't ask James if he wants to do this I can't ask my son I have to make a decision call based on knowing James's spirit and knowing what kind of young man he is and the kind of goodness that he has in his heart and he's bold his brass as well and he's cheeky as they come but he's he's just a damn fine young man and hopefully over time over the years I hope through funding and through Community involvement we want to take a good look at um residential potential for families with young adults who are ready to go out into the world and have a greater sense of community and connection my initial dream was to create a camp you know something in the vein of what beautiful Paul Newman did you know and and Paul's Camp the the Hole in the Wall Gang that's self-generating now as far as budget and finance goes cuz he made those lovely pasta sauces and those popcorn microwave popcorns and things so I had an idea for a camp that would you know would it would open in the spring and it would operate in the spring and the summer and the fall and then it would close for the winter for repairs in my mind's eye I see anywhere between 30 and 80 acres um there would be freestanding Chalet there would be Outdoor Cinema screen there would be a wreck room there would be a swimming pool outside um there would be a couple of little freestanding wooden massage Huts that the parents could go and they could have a little bit of or and or parents of children with special needs they find it hard to do nice things for themselves you know and you can guess why they feel that they just need to just it's so all encompassing it's all encompassing being a parent of a typical child child but to have a child who has such profound struggles as many of our children do it's so all encompassing that if you do something nice for yourself or give yourself a massage or go on a little two-day road trip with your husband or your wife you feel like you're being irresponsible you feel like you're neglecting your child more than if you had a typical child it's just the way it goes because your child's needs are so pronounced and because you feel a sense of guilt as well it's very complicated like that you brought your child into the world that somehow it's your fault that your child was born with whatever the particular condition may be and so the the thing would be to bring parents and the children both the child with special needs and one or two typical children brothers sisters and bring them all to the camp for a week so that the parents could have a good time they could get massages they could Splash about they could sit in the jacuzzi and their child would be doing activities during the day and then at night we'd all come together and there'd be meals shared and there'd be Cinemas out under the stars and all that kind of stuff so that was initially what I spoke to Paula about and then Paula was the one that said well do you think it's time to do the foundation so building a summer camp will be a part of the the foundation as well that would be a big one for me to leave behind and it's all because of James you know it's all in james' honor it's a terrifying thought that I'll miss the last you know 40 years or 50 years of his life um yeah just cuz I won't be there to to to Shepherd and to to protect um but but what would the perfect you know just a life of connection and so James's last 20 30 40 10 years of James's life he'll be somewhere where he feels like he belongs where he feels like he's safe and where he can guarden and watch movies and swim in the pool and go out to the beach and just have a full and meaningful and connected life you know that'll be that'll be the dream [Music]