#15 FASD First Voices Part 3 with Maggie May

Kurt’s quest continues as he interviews another person with FASD in the third part of this multi-part FASD “First Voices” Special. In this episode, Kurt is joined by Maggie May who is a person with FASD, advocate, speaker, YouTuber and moderator for the Facebook support group for adults with FASD called “Flying with Broken Wings”.

They chat about her life and how she lives with this invisible disability. She also has advice for other people who have FASD.

To check out Maggie’s YouTube page click this link: https://www.youtube.com/channel/UCcJmMT33IPmwUIroo5UT_rw/videos

For more information about FASD, please go to: https://www.nofasd.org.au/

Producers: Kurt Lewis, Louise Gray and Julie Flanagan

Interviewer: Kurt Lewis

Interviewee: Maggie May

This project is funded by the National Disability Insurance Scheme (NDIS) in collaboration with NOFASD Australia.

The copyright is owned by NOFASD Australia.

All rights reserved – No reproduction or use of this content without written consent of Kurt Lewis and NOFASD Australia.

The views expressed in this podcast are those of the interviewee. NOFASD makes every effort to ensure all content is free from judgement and stigma. NOFASD’s mission includes reducing stigma for families and individuals impacted by FASD.

Maggie May Biography

Maggie May is a well-known voice amongst the FASD community and is involved in many advocacy activities to raise awareness of FASD. Growing up in a foster family and not learning that she had FASD until she was in her teens, when her diagnosis was finally shared with her, she is able to share some valuable insights into the impact of this disability. She is a popular speaker, YouTuber and a key member of the FASD Changemakers.

Episode Transcript

Kurt Lewis (00:03):

How much do you know about pregnancy and alcohol? The reality may surprise you. Alcohol exposure while in the womb may cause Fetal Alcohol Spectrum Disorder in unborn children. It may lead to lifelong physical and or neuro-developmental impairments, such as problems with memory, attention, cause and effect reasoning and difficulties in adapting to situations. For such an impactful disorder it is rarely spoken about in the popular media. This podcast will take you behind the scenes to chat with the people who understand FASD. This is Pregnancy and Alcohol: The Surprising Reality.

Welcome, welcome ladies and gentlemen. Welcome to this episode of Pregnancy and Alcohol: The Surprising Reality.  My name is Kurt Lewis, your friendly neighborhood podcaster and today I’m bringing you the third part of the FASD “First Voices” special. Today I’m sitting down with another amazing guest, a FASD advocate, YouTuber and moderator for an online FASD support group – Maggie May. How’s it going Maggie?

Maggie May (01:10):

Good, really good. Thank you so much for having me – super excited

Kurt Lewis (01:13):

Oh, it was a pleasure. It was. I’m glad you agreed to come on. Uh, do you listen to podcasts often?

Maggie May (01:20):

I do. I’ve found a few recently that were posted into my – the support group. At the moment I’m listening to two. One of them is FASD Hope and also what I’ve listened to growing up was – Can-FASD had produced quite a few podcasts, so I kind of, I like going through them.

Kurt Lewis (01:38):

It’s amazing how many podcasts are out there at the moment, like in terms of FASD – it’s a really kind of growth industry I know of like several literally this past week that have come out. So, hopefully, hopefully we can expand that kind of library, I guess for people so we can get more knowledge out there. So, getting down to the nuts and bolts of things, when did you get first diagnosed with FASD?

Maggie May (02:00):

So, I was diagnosed at age of five. I was very, very lucky because in Ireland there is no facility for diagnosing of FASD. My mum kind of went really, going through all the back doors and she found a psychiatrist who had heard very little about it, but at least had heard of FASD and for her she was like, OK, Maggie definitely is hitting all of the right boxes. So, she then traveled to Canada to get the necessary training, come back to Ireland, to diagnose me. So, without her dedication I wouldn’t have a diagnosis.

Kurt Lewis (02:38):

Sounds very dedicated of that psychologist. Yeah, do all that training in Canada.

Maggie May (02:43):

Yeah. Oh yeah. I think for her it was, she really wanted to know about it, and she would’ve been one of the – I think there’s two psychiatrists who would’ve been able to diagnose and she’s one of them. So quite impressive.

Kurt Lewis (02:56):

Oh, it’s always amazes me. The lengths people will go to just for more knowledge.

Maggie May (03:01):

Yeah.

Kurt Lewis (03:02):

And we really need more, more like experts, more clinicians, more GPs like that, who are willing to get more, to get that more knowledge, especially about that.

Maggie May (03:10):

Definitely.

Kurt Lewis (03:11):

So, what is it like living with FASD? Can you give me examples on how the symptoms impact your life?

Maggie May (03:18):

For me it is, my memory is terrible. I know, you know, neurotypicals will be, they always say that there’s like a doorway that, you know, you go through a doorway, and you don’t know why you’re in that. Or for me, my every day is like that where I might be told to do something and five minutes later, I’ve forgotten what it is, or I’ll start doing it and forget what it is I’m doing. So, a job very rarely gets a hundred percent finished, you’ll get half finished before I forget why I’m doing it in the first place. Also, I struggle with impulse control, so I tend to do things and then think about what I’ve done after I’ve already done it, which isn’t ideal. And I suppose also just I very much struggled academically just cause, I would process a lot slower than neurotypical people my age would. So, in school I definitely struggled, and I think that is where a lot of the impact came from to do with FASD in my life.

Kurt Lewis (04:18):

So, it must be a difficult kind of to deal with, especially that stuff with memory when you get, you get halfway through – now I’m having problems with my um speech here. Sorry about this. Um, yeah, just when you have those kinds of problems it must make like everyday tasks very difficult for you. How do you kind of cope with that?

Maggie May (04:35):

So, through the years we’ve tried loads of different ways. So, we’d have like magnetic boards with printouts of Maggie, go for a shower, get dressed, uh, et cetera, do jobs. And then as I got older it was kind of like, this isn’t true anymore. So, we kind of upgraded it into like a whiteboard where I’d write down the tasks and tick them off as I went along. That worked for a few years and then it was like, okay, I finally got a phone, and I was like, so my phone is definitely, another arm so to speak. It has like all my reminders and every day we try and keep as similar as possible. So, try and do like – I have cats – so I try and do the litter tray at the same time every day. But yeah, no memories still, you know, it’s gotten easier with strategies and when I was younger, I didn’t really understand much about FASD and how it was impacting, whereas now that I’m aware of it, I’m much more able to be, okay, I’m struggling here, or this isn’t working. Whereas when I was younger, I couldn’t express that so it would just end up in major tantrums and blowups because I would be getting frustrated, not being able to express this isn’t working for me. It was teenage years were fun.

Kurt Lewis (05:51):

It sounds like it must have been very difficult to communicate what was going on with you to the people around you – particularly, I imagine, teachers as well. It must have been very difficult.

Maggie May (06:00):

Well definitely, so in school especially come back to the memory, I would be taught something in the class like addition and be given 10 questions to take home – do it for homework and I’d get home and I could be sitting there four hours having no memory of how to do it. And my mum would be like, Maggie it’s in your journal, you were taught how to do this today. And I would – no, nothing there. And then I go into school the next day without my homework done and it would just come back to me because I was back in the environment where I was taught it. So, my brain kind of switched to school mode, whereas at home – and teachers would often give me a very hard time saying, you know, I’m just chanting my arm or I’m just being lazy when actually I couldn’t – It was, it’s just there was no memory of what I’ve been taught that day.

Kurt Lewis (06:49):

Yeah, and that must’ve been very frustrating to kind of go through – have the symptoms you have of the FASD and its impacts changed over time, going from teenager to adulthood?

Maggie May (07:01):

Definitely. I think things that I struggled with as a teenager, as I got more knowledge on FASD, I was able to see the bigger picture. So, before I’d be like, you know, I want to go out drinking with my friends or I’d want to go partying or, I remember my friends were starting to learn how to drive, and my mum was just like, Maggie, that’s not on the cards for you. And I just thought I had the most un-coolest parents ever, who were just overprotective. And then, as I got older, I was struggling with impulse control and I realised, okay, if I’d started drinking, I wouldn’t be able to stop. So, definitely those challenges of wanting to fit in, wanting to be normal, I learned to accept that that wasn’t going to happen but it, that wasn’t a bad thing.

(07:48):

For me for so many years I had been trying to fit in and put on a mask, so to speak, and see how my friends were acting and just copy that – I wouldn’t be myself. I suppose when I hit my twenties it was then that I found the support group “Flying with Broken Wings” and I was just like, hold on. I was reading things and I was like, wait, that’s what I do. And for me I was just, I’m not alone anymore. So, I was getting to that point. That was definitely a huge challenge, was kind of getting to see the bigger picture of things, if that makes any sense.

Kurt Lewis (08:23):

No, that makes complete sense. I imagine seeing the bigger picture must help orientate yourself. Where do you belong in that kind of space?

Maggie May (08:31):

Definitely, especially, you know, I have never met another person with FASD in real life.

Kurt Lewis (08:36):

Really?

Maggie May (08:37):

Because you, I’m sure Ireland, there’s so many people with undiagnosed FASD.

Kurt Lewis (08:41):

Yeah.

Maggie May (08:42):

But because you can’t get a diagnosis – so all of my friends or people I know with FASD are all online, which can also be a struggle at times when you, you really just want to meet somebody and talk about it. But I think, think for me, I was very fortunate that I found so many different support groups online. So, I’ve got a good group of friends who I would consider close. So, I’d video chat with them – and we’d spent quite a few hours video chatting and just, you know, talking about it and hey, I’m struggling with this, have you struggled with this? How did you, what strategies did you come up with? And so, we’d kind of be throwing ideas off each other – on this might help, which is really nice. It’s quite refreshing.

Kurt Lewis (09:23):

Well, it’s, yeah, it’s nice being able to have – actually talk to someone. I imagine its somewhat of relief going from not being able to talk to anyone, to having lots of people you can communicate with on a daily basis.

Maggie May (09:33):

Exactly. And people who know exactly what you’re going through or already gone through it or going through similar things.

Kurt Lewis (09:41):

It must have been somewhat of a relief of some respects to have just to have someone you can, who understand, kind of stuff. And that’s, I reckon that’s really important.

Maggie May (09:50):

Especially – I grew up in foster care. So even though I got a diagnosis at the age of five, I wasn’t told until I was 15 that I had FASD to begin with. So, it was very difficult because I was – my parents knew, so they could tell why I might have been doing things or why I was acting the way I was, but I didn’t know. So, for years I just thought I was just a terrible person who couldn’t control her impulses. And then once I was told it was a weight lifted, cause I was like, you know, this is not due to my fault, it’s not my fault. I keep doing the same things over and over again and I don’t learn first time around – I have to do it 60 times and then I might start to, this isn’t such a good idea. So, it was definitely such a relief.

Kurt Lewis (10:35):

So, what are the major challenges you face because of your FASD? What’s the major challenges you face now?

Maggie May (10:42):

In Ireland there is still no recognition for it. So even though I have this diagnosis, I don’t get any extra support and for me, I’m now wanting to move out of my family house. I want to go, I want to fly the nest, but there is nowhere for me to go as in there is accommodated living, but it’s not for people FASD, it’s for recovering addicts and due to my lack of impulse control that would be a very bad fit for me. Now I’m kind of getting into the whole, having to be an adult. It’s difficult trying to know where to turn to and where to go for me to be able to do what I want to do – but having the right scaffolding there so that I can succeed in moving out and living independently – and trying to get more recognition, I think. The fact that it is an invisible disability, people, even though I have all the paperwork, still don’t believe that actually I have got challenges, or I do need help with this. Which creates its own challenges I suppose.

Kurt Lewis (11:44):

Mm. It must be very incredibly frustrating. You have all the paperwork, you’ve gone through all this and yet – people aren’t recognising it. It’s, it’s insane in my opinion. And I hope the Irish government kind of wakes up to that – they wake up and realise there’s a section of the population that needs support for FASD.

Maggie May (12:03):

Yeah. Thinking all over the world, you know, if you’re, when you’re younger there are supports, but then all of a sudden when you become an adult, it’s very difficult to find any sports.

Kurt Lewis (12:14):

Yeah.

Maggie May (12:15):

Cause you’re meant to outgrow your disability, which is insane to even think like that,

cause it doesn’t work like that.

Kurt Lewis (12:23):

Yeah. How can you outgrow FASD? It’s not something that can be outgrown, it’s a lifelong disability and…

Maggie May (12:29):

Exactly

Kurt Lewis (12:30):

I just – I find it insane that people don’t understand that. Like it’s, it’s a frustration.

Maggie May (12:35):

Yeah.

Kurt Lewis (12:36):

And I imagine it’s, it’s a, it’s a real frustration for you just

Maggie May (12:41)

More, uh, awareness. Mm-hmm.

Kurt Lewis (12:42):

More awareness. That’s what we need. More people aware, more, FASD awareness. Hopefully that, that, that’s changing slowly. I hope it’s changing slowly.

Maggie May (12:48):

Last year or this year, I don’t know what year it is anymore. Ireland had its first FASD online conference ever. So that’s, that’s something, yeah.

Kurt Lewis (12:58):

That’s progress. And hopefully it leads to like more recognition. More awareness at the end of the day.

Maggie May (13:04):

Yeah – exactly.

Kurt Lewis (13:06):

So, you mentioned before that you use your phone as a – as a tool reminder and you have other things to help you with your FASD. Is there any other strategies that helps you deal with the symptoms?

Maggie May (13:18):

I suppose another one is for me it’s crucial that I get my kind of ‘zoning-out’ time in order for me to be able to regulate and function. For me that is listening to music and dancing in my room or watching something on Netflix, but just having an hour a day where it’s just my time. You know, I don’t get called to jobs, it’s just Maggie’s zoning-out time pretty much. And I’ve noticed that, you know, when my life gets super busy when I’m working and stuff and I don’t get that, it just disrupts my entire week. Things don’t run as smoothly as when I just get like an hour a day. Took me quite a while to discover that that was the cause. So, that is a very crucial strategy is – knowing your child might need something as in it might be an hour of gaming or watching an hour of television or something where you just zone out. And for everyone it’s different. Some people it’s sports or just going out for a walk. I do like going out for a walk or hanging out with animals, but I think that really is crucial in getting me to stay functioning and avoiding meltdowns.

Kurt Lewis (14:26):

Now, for the most interesting question, I like to think, this is the question I’ve been asking all during this like, FASD “First Voices” special, so I’ll do a drum roll or something like that, you know. Just, do you have any advice or, or tips for people with FASD or caregivers who are helping a person with FASD who may be listening at uh, at home?

Maggie May (14:48):

I’ve got a few. First of all, listen to the person that you’re caring for. As in we know ourselves, so if something’s not right, we will tell you. We might not be able to express saying my shoes are too tight, we might have a meltdown or something. But it’s being able to read between the lines that, okay, this meltdown is for a reason. It’s not just out of the blue. I think caregivers and people looking after, you kind of have to be detectives, as in you kind of have to just ask questions and because people on spectrum struggle to just be able to say what the problem is straight out, I was 18, 19 before I’d say, you know, the sound of metal spoons and cups drives me insane. For people looking after us, you know, you have to be detective. It’s meltdowns or blowups happen for a reason, could be an instant that happened in school.

(15:36):

So, it’s just, you have to ask questions and really prompt – prompting is huge. I also think for people on the spectrum, it’s we can achieve anything that any other neurotypical could. It might take us a bit longer, but if the right scaffolding is in place, we can do it. I never thought I’d go to university – and I graduated university. I never thought I’d hold down a job and now I’m manager on egg processing farm. And so, when people say can’t do something, no, we can do it. It might not be at the same time as their friends are doing it, but we will get there. And also, when we fail, it’s okay. It’s okay that we fail at doing things. It’s as long as we have a landing space, whether it’s people looking after us, friends, as long as we have a safe space that we can, you know, go there, rest a bit and then we try again and we might get a little bit further next time and fail again. But at least we got a bit further. I think it’s getting that it’s okay to fail because it just means we haven’t found the right strategy yet.

Kurt Lewis (16:39):

Wow. Um, that really hit me right there. (Clears throat.) Sorry, I don’t, I always get, I seem to get emotional, but that just really made me emotional. I’m sorry about that, Maggie. Very unprofessional. Yeah, I just wanted to say you’re, you’re amazing, Maggie.

Maggie May (16:54):

Thank you.

Kurt Lewis (16:55):

Thank you for coming on the show and talking with me about FASD and about your experiences. I’m sure they’ll help a lot of people listening today.

Maggie May (17:02):

Thank you for having me. I really enjoyed it.

Kurt Lewis (17:06):

Thank you for listening to this episode of Pregnancy and Alcohol: The Surprising Reality. Please tune in next week for another episode of our little podcast. If you like this podcast episode, then please show your support by leaving a rating and review on iTunes. Every little bit helps. This project is funded by the National Disability Insurance Scheme, NDIS, in collaboration with NOFASD Australia, all rights reserved. For more information about FASD then please go to www.nofasd.org.au.