Transcript for
Supporting the mental health of children who stutter – part one

Rich (00:00): When people are more aware of those internal issues and the internal and the factors and stuff, I think that creates or that enables a community, a society that is more of understanding, more of accepting of people who stutter, and hopefully, with all that then they are able to understand that when you engage with the person who has a stutter, all you really have to do is provide the space and time for them to say the words that they want to say. And just solely by doing that you can really change the trajectory of a person’s day. That is the positive impact that can happen for a person who stutters when they’re just provided that time to say what they want to say.

Narrator (00:48): Welcome to the Emerging Minds Podcast.

Nicole Rollbusch (00:54): Hi, you are with Nicole Rollbusch. On today’s episode, I’m joined by Rich Stevens and Mitchell. Rich is the President of the Stuttering Association for the Young Australia, more commonly referred to as SAY: Australia. While Mitchell has been involved with SAY: Australia for the last four years, first as a participant and now as a mentor to other children and young people. Both Rich and Mitchell have a stutter and they’re here today to talk about what it’s like growing up with a stutter, how it can impact children’s mental health and what people can do to best support children who have a stutter. It’s great to have you both here. Rich, could you start by telling us a little bit about what SAY: Australia provides to children?

Rich (01:37): Yeah. We help and support the kids and teens who stutter from the ages of seven up to 18 years old. What we do is we provide a space where they can be their true, authentic selves, where we celebrate their voices, we celebrate their stutter, we provide this accepting space, this community almost where it’s a safe space, where there’s acceptance, where there’s empathy, a lot of love and a lot of support and a lot of listening as well, a lot of listening where we invite these kids to share their stories, to share their voices, to share themselves in a space where we have a lot of fun as well. But the essence of it as well, a big part of what we do is we provide the unique opportunity for young and people who stutter to meet other young people who stutter. Because for a lot of young people who stutter, they can go throughout their childhood without ever meeting anyone who has a stutter.

(02:41): So to come into a space where they meet their kids and teens who they sound like them, they’re just like them. In this space where the only ask that we ask of anyone in our space is to be themselves. And so within that space, we provide… So there’s three arms to the programming that we offer. We offer the social hangs that are in person here in Melbourne, and they are online as well in the Zoomisphere. So we offer all that free. We offer a camp, a summer camp as well. And then a big part of what we do is we offer our Confident Voices programme, which is a hundred percent free, and that is our creative arts, a performing arts programme where we invite the young people into our space to work together in small groups and to create these original and pieces, and be that songwriting, be that playwriting, be that spoken word.

(03:50): We use the arts as a vessel really, as a tool for them to share their voice, for them to be able to express themselves however way they want and to also introduce the arts to them where in the past they might not have ever been invited into the arts and stuff, or they thought the arts is not for me because I’m a person who has a stutter. Am I going to be picked? Am I going to be able to get up on stage and have the time and the space that I need to say those lines after? So what we do is we use the arts as that tool, but the arts is really the wallpaper of the room, if that makes sense. So in the middle of the room, it’s the connectivity and stuff, it’s the friendships, it’s the safe space where they’re seen, where they’re heard, and where they’re loved for their true authentic selves. So even though we are Melbourne based, we operate on a national level as well. And we’ve been connecting with kids who stutter, I think for four years now.

Nicole Rollbusch (04:48): Yeah. Yeah. I don’t know a lot about stuttering, so I’m really curious to learn a bit more about the experience. How common is it and how does it usually present in kids?

Rich (05:06): So it’s really common really with young and people of the early school age. From the research that is done on a global scale, you tend to see the same numbers across the world really. So the range of the percentage of kids, I’d probably say of the early school ages can range anywhere from 9 to 11% of school age children in those early years. Across the globe, adults we’re looking at 1% of the population, which is a lot, which is a lot of people. And that is something that as people who stutter, for the kids and children, and probably a lot of adults and probably a lot of people in general, don’t realise how common it is across the world, really. So that is within that age range of the children who have a disfluency in those early years. And the research has shown that probably a third of those children will go on to have a stutter for the rest of their lives, like me.

(06:22): I’m a person who stutters and stuff, and I continue to stutter throughout my childhood and throughout my adulthood. So it’s very common. And what you would tend to see, so it’s kind of like if you think about having a stutter as an iceberg, all we see is the tip of the iceberg. And if you relate that to having a stutter, what you see would be the repetitions, which could be on a word or on a syllable, you could see a prolongation, so a prolongation of a sound, saying a word or a syllable, or you could see also a block as well. And that’s the voice block where you can hear the air that is kind of trapped or the word, it kind of feels trapped in the person’s mouth and the throat. Or it could be a silent block, which is exactly what it is. It’s like it’s silent.

 

(07:25): And that is quite hard for people who probably don’t have a lot of experience around the people who stutter to really see that really. But what people tend to not see is the bigger part of the iceberg is everything that if I continue an analogy of an iceberg, is under the level of the sea, what you don’t see. So what people don’t tend to see is a lot of shame, a lot of guilt, a lot of embarrassment, a lot of isolation, a lot of loneliness because it’s quite rare as a child that you’d meet another person, another child who has a stutter. And also the fear of speaking, the fear of speaking, the fear of being found out as a person who has a stutter. Because a common theme in my experience, in my experiences now when I’ve got to know a lot of people who have a stutter, when they’ve shared about their childhood, the fear of speaking was so great that, well, the fear comes from what reaction is from the people. So if you think of bullying, if you think of the mimicking, if you think of the name-calling. So what a lot of people who stutter, what they realise to not be found out as a person who as a stutter is to be silent. Because if you don’t speak, you’ll never stutter. 

(08:59): And unfortunately, that’s a tragedy that happens to a lot of young people and to a lot of adults as well. And I think what a lot of people don’t realise, and this fact that I’m going to share, it’s across the world, almost everyone I know who has a stutter, almost everybody I know and everyone I’ve spoken to irrelevant of where you’re born, in the country, irrelevant in terms of culture, in terms of language. I’d say like 99.9% of people who I’ve met who have a stutter, in all the stories I’ve heard, they always stutter on a certain word, and that word is their name. And if you think of the impact of that, how many times do we say our name a day? How many times are we asked our name? And I think what it comes down to is to say your name is one thing, but a lot of it is a reaction.

(09:57): And that is something that comes with the goal of getting awareness out there really. And the great thing about awareness is if you only think of the tip of the iceberg as a person who has a stutter, if that’s all you know and all you learn, then that can be really hurtful for people who stutter and stuff. And when people are more aware of those internal issues and the internal factors and stuff, I think that creates or that enables a community, a society that is more of understanding, more of accepting of people who stutter, and hopefully with all that, then they are able to understand that when you engage with the person who has a stutter, all you really have to do is provide the space and time for them to say the words that they want to say. Just solely by doing that you can really change the trajectory of a person’s day. That is the impact, the positive impact that can happen for a person who stutters when they’re just provided that time to say what they want to say.

Nicole Rollbusch (11:21): Yeah. And I wanted to ask you specifically about what the impact on mental health and wellbeing can be for kids. You’ve touched a little bit on some of the things that come up, but can you tell us a little bit more about that?

Rich (11:34): Yeah, I think when we go for all the research that has been done in the field of stuttering, the figures that tend to come out, I think people who stutter, children who stutter are maybe 33% more likely to experience social anxiety, which can carry on into adulthood. I think there’s a high percentage of people who stutter, of children who stutter to be bullied at school. And there’s a high percentage, if you think of all the communication difficulties that children have, what they have seen is that young people who stutter are more aware at an earlier age that they have a difference. And what they’ve also seen in the studies is that the peer group at such an early age, I think it was like four years old or five years old, the peer group who are fluent, don’t want to spend as much time with people who have a stutter because it’s all about communication, isn’t it, and stuff.

(12:49): And it’s all about when there’s a barrier there that can affect those early friendships. When we talk of mental health, when we talk of the impact of having a stutter, and if you grow up in an environment where you don’t get that time and you don’t get that space, then long periods of isolation can happen. Long periods, not being able to share our voice and can go on for many, many years. And if you think of when we are not in a safe space to share our thoughts, share our dreams, share our feelings, when that is all kept inside, that can be a burden. It can be a huge burden on a young person’s shoulders. And I think what has been shown in the research and stuff is that the social anxiety, this fear of speaking can continue into adulthood and stuff.

(13:58): It can continue into adulthood. It can have a negative impact on education. So that fear can bleed into a lot of things. It can bleed into your choice of career. It can bleed into, am I ever going to meet a partner who is going to accept me as a person who has a stutter? What’s it going to be like in higher education or what’s it going to be like in college? What’s it going to be in the work environment? Am I going to have to hide it from people? Is that what I’m going to have to do to be successful in life and to survive almost? So the mental health part is huge.

Nicole Rollbusch (14:39):

Yeah. So, such significant impacts. Mitch, I’d really love to hear about your experience and your perspective of what it’s been like growing up with a stutter. Can you tell us a bit about that?

Mitchell (14:55): Yeah, sure. So I’ll probably say in primary school, I had no care about how I talked or anything. I actually don’t even remember stuttering that much in grade one, grade two even. It was probably more at when I started getting older and all that in grade four, grade five, grade six. And I’m like, “Oh no, I’ve got this thing where I can’t talk how other kids are talking, how my footy team are talking, how much my parents are talking and family members and all that.” So then that started year… And I started getting a bit anxious in grade five, grade six, trying to talk to school kids, teachers, even my sports teams, not like introducing myself because trying to say my name and introduce myself to new people is so hard. And then in grade five, I had to do this speech where we had to get this… I wanted to get this sports captain role for the school, so then I had to make this speech and all that.

(16:48): That was good. Then standing up trying to talk in front of everyone, I was shaking the paper, everything. I was so nervous about it. Then as I started introducing myself, obviously I couldn’t get my name out, so it was probably two minutes. I finally got one name out and then some kids were trying to tell me to hurry up, asking me what my name is and all that. And then I was like, “What the hell is going on?” And all that. And then I look at my teacher and then she goes, “Just keep going.” So I kept going. Then I got anxious about whether or not if I got it, but then two weeks after the speech, I got good news that I got the sports captain role. So that boosted my confidence a lot. Then in grade six, had to do a speech for all of the school kids, parents and all that on every Friday, I think.

(18:02): And yeah, the first two ones, we were so nervous because it was something new pretty much. And then after that, I was talking really well, everything. Then to start in high school was probably the most hardest thing ever, because I think I only knew two or three kids from primary school that was going to high school. So trying to introduce myself and all that was really over overwhelming and exhausting. And that was probably my worst year mentally and physically as well because I would get pain in my aches and jaws, just trying to talk. And then, and also talking about mental health. Yeah, that was probably one of the worst years of my life. I was acting out at school, getting suspended in school, getting suspended on my sports team, and then also thoughts about self-harm and all that. And then, yeah, that’s something that I don’t really like to look back on, but I know with the support of friends, family, and even SAY: Australia as well, they’ve done so much to help me be the person who I am. Yeah, that’s me.

Nicole Rollbusch (19:52): Yeah. Well, thanks for sharing that, Mitch. It sounds like you’ve experienced a lot, but you’ve come a long way as well.

Mitchell (20:01): Yeah.

Nicole Rollbusch (20:02): Yeah.

Mitchell (20:03): For sure. Yeah. Yes, SAY: Australia’s only been here for four years, but it feels like I’ve been there for whole entire life, which is awesome.

Nicole Rollbusch (20:20): Yeah, that must be a good feeling to have that support and that connection as well that Rich was talking about earlier.

Mitchell (20:30): Yeah, it is.

Nicole Rollbusch (20:31): And what about for you, Rich? I think growing up as someone with a stutter as well, can you talk a little bit about, if you think back to when you were a kid or a young person, what would’ve helped you feel safe and supported?

Rich (20:45): I remember I spoke in a different way early on and stuff. I remember trying to say my name when I was four or five in school and just feeling stuck, just feeling stuck and not knowing what was going on. And I remember, yeah, I think the teacher was kind of, I don’t know, I think… I’m trying to think of a description there, may be in shock because it happened all of a sudden. So those early years, I noticed a difference. I remember going into therapy when I was about six or something. I remember playing with a lot of toys in the corner, a lot of trains and trying to join my speech up as a train and the carriages. And so not taking a breath in between words, doing the very rhythmic approach into speech. And I remember the SOP talking to my parents a lot.

(21:34): And my parents were like, great. They were like awesome. They never clipped my wings. My mum always wanted to talk about it. She always wanted to talk about how many times I stuttered, how was school, was I reading today? Was it hard and all these things. And then my dad, he was very different, my dad. My dad, he didn’t talk about it a lot. I think in later years I realised he actually shared, actually, he had a stutter as a child and a young adult. And he never shared that with me until I was about 32 or 33. And I get why because I think he felt a lot of guilt that he was the cause. So I understood that. But I know they found it hard because they didn’t know any of the parents. They weren’t introduced to any other parents of children who had a stutter. And I know they internalised a lot.

 

(22:28): And it was a shame really and stuff, because part of what we try and do is try to connect parents of children who stutter so they’re not alone as well. In school, I do remember it was more internal, it was more… I remember when, I think I was eight years old and I was watching Father of the Bride, not the Steve Martin one, the Spencer Tracy one, and I remember this, and obviously in the film he has a daughter who gets married and at some point I think he does a speech. And I remember being eight years old and thinking, wow, if I have a daughter and she gets married, how can I do a speech as a person who stutters?

(23:10): And I’m eight years old and I should not be having those thoughts at eight years old. I should be more thinking about taking my bike out. Or I think, I don’t know what was on at the time, I think it was the Batman film and the Turtles film and all that. And those are the things I should have been thinking about. But that was a big thing for me. It was those internal, I had a year of an SOP, I think when I was 12 who had a stutter, and it was a bloke who had a stutter and stuff.

(23:39):

I was thinking, who’s this guy? And I was thinking, I’ve got to introduce myself all over again. And he introduced himself and he stuttered and he stuttered. And for that year it was great and stuff. We worked on a bit of fluency, but he just allowed me that space and to share really.

Nicole Rollbusch (23:53): Yeah, for sure. It sounds like your experience, I guess, has led to your passion with the work that you do at SAY: Australia, providing that space for kids.

Rich (24:04): Yeah. I just want give kids and teens who stutter a thing that I didn’t have. And it is a drive and it’s a passion and it gets you up at five o’clock in the morning to answer those emails of new families. But I’m very fortunate to be where I am and to be in a position where I am. And I’m very fortunate to meet people along the way who really care, who want to make a difference. Like this guy who’s next me, let me turn to Mitchell, came to our programme four years ago now, wow. Four years. Wow, man, wow.

 

(24:42): And to see him just to do his thing, to be himself. And yeah, by I tend to know that that is hard and it’s still hard, but to do it and to do it in our space and as a young person in our space and then to come to as an adult now, and now he’s helping other young people who stutter. I mean, yeah, I’m fortunate. I’m in a space where I’m able to provide that space, but these are the people of the future and stuff, and it’s great to see them and it’s great to provide a platform.

Nicole Rollbusch (25:21): Yeah. Awesome. So you’re nodding along to a bit of what Rich was saying, Mitchell. I guess some of that resonated with you as well.

Mitchell (25:30): Yeah, well, just touching on what Rich said, just creating that space for kids who’ve never seen or heard other kids their age stutter before, and then finally walking through the doors, seeing that there’s heaps, well, a few kids their age there. There’s an example of these two awesome kids, James and Leo. As soon as they seen each other, they’ve created this tight-knit close friendship and it’s just awesome. And seeing them mingle with each other every Saturday for two hours, it’s all what makes me always excited for every Saturday morning seeing all of these kids’ faces and all of the other volunteers and Rich as well just makes me feel so many good emotions.

Nicole Rollbusch (26:58): Yeah. And I wanted to ask you a little bit about the mentoring. What’s that been like, kind of stepping into a bit of a new role?

Mitchell (27:08): Well, I’ve kind had, I guess the experience where… So in my family, I’m the oldest of nine… Well, not in my family, but cousins and all that. So I always look after… well, I try my best to look after all of them. So I’m a good role model for them. So I’ve just been somewhat looking after my cousins into this space, just being a good role model for all these kids. Yeah.

Nicole Rollbusch (27:58): Yeah. That’s great. You’ve already grew up having that experience, so it’s quite a natural role to go into.

Mitchell (28:07): Yeah, for sure.

Nicole Rollbusch (28:07): Well, we have to leave our conversation there for now. But thank you so much to both of you for joining me and to our audience for listening in as well. I’ll be continuing my conversation with Rich and Mitchell in part two of this podcast. So I hope you can join us again for the second half of our conversation soon. Bye for now.

Narrator (28:27): Visit our website at www.emergingminds.com.au to access a range of resources to assist your practise. Brought to you by the National Workforce Centre for Child Mental Health, led by Emerging Minds. The National Workforce Centre for Child Mental Health is funded by the Australian Government Department of Health under the National Support for Child and Youth Mental Health Program.