FASD Awareness Day

0:00Now, today, in case you weren't aware, is international FASD Awareness Day, shining a light on fetal alcohol spectrum disorder, a lifelong neurodevelopmental disability that can have profound impact on individuals and families. And there are calls for greater awareness, understanding and support, as well as increased funding for services delighted to be joined. Once again, by Tristan Kassen, Renny the CEO of FASD Ireland, talk about the campaign and why raising awareness matters. Tristan, a very good morning to you. Good morning, Alan. Thanks for inviting me in today. Yeah, no, delighted to have you in and talk to us a bit first, firstly, about the importance of today and how successful international FASD Awareness Day is in raising awareness. Particularly because no matter how often you come in, I still feel and there is growing awareness, fetal alcohol spectrum disorder, might be a new one for some people. Yeah, absolutely. I received a message this morning, actually. A good luck message from our colleagues and friends in the UK, who said you're really making a huge kind of improvement in Ireland and in spreading the word,

1:01but we do have lots of work still to do. This year's theme is FASD grows up and really it's about recognising that when young people reach the age of 18, whilst the services that may support them as children and young adults has been reasonably okay, that service stops at the age of 18 and yet their condition stays with them for the rest of their life. So the theme that we decided upon as all of the organisations across the UK, Northern Ireland and Ireland is that we need to promote the theory that FASD grows up, it stays with people for the rest of their life and they will need those supports forever. So that's why we're shining a light on that particularly today. Okay, and that is a really important issue. And I would imagine that if you are approaching that age, that would be quite a bit of worry amongst people in that situation, knowing that they are going to be dealing with this for the rest of their lives. I need help, I need support where it's going to end soon,

2:02it's going to be kind of where am I going to get it from. And that's I guess where organisations like yourselves come in, but we'll touch on this a little later on as well as you need a bit of support yourselves to offer that support. But is that where people in that scenario turn to? Yeah, essentially, I mean your listeners will be very familiar with my son Jacob, speaks quite often about living with FASD. Two weeks before he was 18, he was called into camps and told look, our service has to stop and with nothing else for you. So everything stops, his psychiatry, quarterly meetings or appointments stop, his medication stops because a GP can't medicate somebody with FASD, everything stops. So it's as if they just slide through the cracks because they turn of age. And that's very distressing for them, but also for the parents and carers who essentially are there to provide those supports. And so very often they'll turn to us and say, what do I do? What can I do?

3:02And that's a very important feature of our national helpline is that we provide that peer support from parent to parent, you know, care to care of what worked well for us and what strategies they can perhaps try to help their young person. For example, somebody with FASD can only achieve around three or four hours of sleep a night. It's a little known fact that if you warm traditional carousel milk on a stove, never in a microwave, but on a stove, it will release around two milligrams of melatonin. That's natural melatonin, the protein that the human body needs to achieve a good sleep cycle. So you don't necessarily need a doctor to do that. It's something that my grandparents would have known. And I thought it was nice that they gave big warm glass and milk before bedtime. Actually, they were just trying to get me off to sleep quickly. It had an offie for one day. Exactly. We're talking about how FASD Ireland, in fact, you know, you're headquartered in NS as well. And you've done great work over the past number of years in raising awareness and maybe breaking down

4:06maybe some of the potential stigmas around it. But is there still a bit of that lingering Tristan because of the link with alcohol during pregnancy and for that very reason, can some people still be even if they're pretty sure there's something up. They're not 100% certain it's FASD, but they have an inkling, but they're perhaps reluctant to come forward. Yeah, I was actually on a webinar yesterday produced by the HSE and you'll be surprised at the number of clinicians that are embarrassed to ask the question of their patient or of the patient's parents. You know, that question about was the pregnancy plan? Did alcohol feature in your social fabric at that point? Were there any parties or anniversaries or did you wet the baby's head, you know, while you were pregnant or planning to conceive? I can understand what those questions would be. You'd be slightly reluctant to embarrass to ask them. My God, they're important questions. Yeah, because you're not only asking that person the question, but you're also then building the future for that baby or that child as it grows up. And that's why it's very important.

5:06We cannot get a diagnosis currently without evidence of prenatal alcohol exposure. And what I would urge all parents to do is if they have just found out that they are pregnant or that they, you know, they are starting to have a family, they need to look on our website and look at, you know, when is a safe time to drink alcohol? Essentially, for a man, he should not drink any alcohol in the 90 days before conception. So that pregnancy needs to be planned by both parents and a lady shouldn't drink any amount of alcohol immediately before conception or for the nine months of pregnancy. When I say any alcohol, I mean literally any alcohol, no amount of alcohol is safe to drink at any time so that you can avoid the risk of FASD in your child. Yeah, because I'm sure there are those who would think, you know, one glass of wine and one occasion, if you know, your birthday fell during those nine months or whatever it might be, but you would just urge complete absence. Yeah, because alcohol is a recognized toratogen and a toratogen is a poison that crosses the percentor and goes to the developing fetus first. Another toratogen that your listeners will be familiar with is the limit of

6:11mind and that's been outlawed. That did lots of harm to developing babies. Alcohol works in a similar way, although it affects the brain more so than the developing body, although we know it can and does affect the developing body too. It's just that with alcohol, you can't see the damage. So that's very serious. If you have a child who's living with FASD, often they will present as a typical child, but once they get to the age of five and up to the age of 10, we start to see the symptoms appear and lots of people go, there's something going on, but I don't understand and they're too worried to come forward and say, actually, we didn't plan the pregnancy. I was still drinking until I found out which was week six and of course that's the danger zone. In terms of the supports that are there, what supports are currently available to families, cares on where are the biggest gaps? Well, Ireland still remains the only country in the developed world that doesn't formally recognize FASD as a neurodevelopmental disability. So that is the

7:11biggest gap until the country comes forward steps up and says, okay, we now recognize FASD. Then there's no real power to get the HSE to provide a national clinical lead for FASD. Tristan, why do you think that hasn't happened yet, particularly where, and as you say, in so many other countries that has been recognized, you would assume it is well known at this point. It's the million dollar question I... And we're going to get onto funding. Yeah. I was going to say, at the very least I could do is recognize it, but if they do recognize it, does that then mean, ergo, you have to provide some sort of financial support? I think that's part of... I think in our elected representatives, some of our elected representatives' heads, they are worried about what the cost implications are. But we did an exercise last year where we were able to put a value of 4.6 billion euros a year being wasted from the economy by the state because they're not recognizing FASD and they are not supporting these people. And these people then will just have to go to the health services anyway in the

8:14hospitals and in some way, to stay pace. They're already in the system. They're just not being looked after for the right diagnosis and that's a complete waste of money. This is the part where you ask for money now. I know, it feels like a broken record. You have to keep hammering off the door. We have to keep asking because funding is extremely limited for us. We were very well supported by Minister Anne Rabbit when she was the Minister for Disability. Sadly, she lost her seat. The people of goalway voted with their feet on that one. And so she's now in the shanard. But from the shanard, she's not able to provide that support to us as an organisation. The current incumbent Minister doesn't really understand FASD. She's probably going to hang me for saying it, but she just doesn't get it. And because she doesn't understand it, she has no interest in the work that we do. Absolutely none. I would challenge her, everybody today, to look on her her social feeds and see if she's recognising international FASD awareness date because she has

9:16never done that. And yet she recognises other disabilities. And this isn't about playing one disability off against another. I'm sure if she were here, she would say that is not the case that she recognises, but you suspect that if there's a lack of notification of it, that that is suspicion. And I've sat across the table in a room with her at Lenta House. And you know, she's been very frank with me and her words were, well, everybody knows the risks of alcohol. So why should we bother? That blew me off my feet because one in 10 babies today is born with a form of FASD. It's a silent epidemic that is fast coming down the road in our society and costing billions of euros that actually, you know, I saw a debate the other day about free travel that everybody in Ireland should get free travel. Well, if we were saving 4.6 billion off the bottom line, we could default to do that. So, you know, this really is a national conversation that needs to be started. But for us, the only way we're receiving funding right now is through our GoFundMe,

10:17which details are on the website for that. And Philanthropists who, you know, there are a few locally and we would invite them and implore them to come along and look at our work and talk to us about what we do. It doesn't matter how much people donate and give us. You know, if you want to come up to the office and put a euro through the door, I'm happy with that. Every penny goes to providing frontline support service, our national telephone helpline. And everybody on the team, and I have to say thank you to my team. Everybody on the team is a volunteer. Nobody is receiving pay or wages for the work that they're doing. In terms of today, how are you marking it? You handed me a list earlier on. An impressive list of many buildings around the country that are going to be lit up for today, including Bonratti Castle. Yeah, and you didn't spot my trainers today, but we were those are snazzy red trainers, I have to say. Yeah, so there's a hashtag called Red Shoes Rock and red wearing red shoes or wearing a red item of clothing is long been associated with international and face the awareness day. So if people have red shoes, please put them on today. Please take

11:22photographs. Please post them on socials, tag FESD Island. You can hashtag if it red shoes rock. Let's raise awareness today together as a community and, you know, let's light up Ireland red. Okay, brilliant stuff. You said you'd be happy if people even put a euro through the door to save me the journey down to the offices down the street. Here's a euro for you, Tristan. Oh, thank you very much. I appreciate it. A little bit helps to see you. He really did. He really did give me a euro. No more, sadly. They see you over FESD Island, Tristan Castle. Ready? Thanks very much, Tristan. For joining us on the show.