Transcript for
Parent voices: Supporting children with disability – part one

Narrator [00:00:02] Welcome to the Emerging Minds Podcast.

Jacquie Lee [00:00:10] Welcome everyone. My name is Jacquie Lee from Emerging Minds. In this two-part episode you will hear from Jacqui, Chris and Lisa, whose children live with disability. We would like to acknowledge their expertise as parents and thank them for taking the time to share their wisdom with us today.

It is difficult to accurately estimate how common childhood disabilities are. While the statistics do vary, it is believed around 7% of Australian children under 14 are living with a disability.

Children with disability experience the same range of emotions as every other child; and their mental health and wellbeing are influenced by the same factors as other children’s.

To begin, we will hear from parents Jacqui, Chris and Lisa talking about their children as ‘whole children’, whose needs, hopes and strengths are just like any other child’s.

Chris [00:01:00] Well, I think just because looking at someone with a disability, you look at their disability rather than who they are. And really, my son is quite severely disabled. So his body doesn’t work, but his brain is perfectly fine and he’ll have you wrapped around his little finger in no time.

Jacqui [00:01:20] Tahliyah is a typical 10-year-old child, aren’t you, what do you like? Do you like fart and poo jokes? You do, don’t you?. And do you like, do you have a collection of books? Yes.  And you likes music? You likes singing. You like it when people dance. You like swimming, you like horses, you like dogs. Who’s your favourite? Is Emi your favourite? Your puppy dog? Her music choices and book choices are still age appropriate. So her music is like what’s on the radio at the moment, the top 10 hits.

Lisa [00:02:13] She loves dancing, music. Anything that involves any movement. So that might be jumping, swinging, and that makes her really happy. She loves being outside and in nature. Loves art and expressing herself through art, particularly just exploring different mediums. So, you know, if it’s clay or paint or just getting really messy, she really enjoys that.

Chris [00:02:42] If he just achieves a little goal or if he stands for a couple of seconds, you know, that’s really important. And that’s like a goal that he’s achieved. And it makes everyone feel happy or just, yeah, he’s just a joy to have around. And he finds the good in everything and whatever activity we do, as long as we can modify it so that he’s included his just such. Yes so happy.

Jacqui [00:03:05] She likes to be kept busy. She likes and when I say I kept busy too and included it can be with helping me do my housework, you know, it doesn’t have to be kid appropriate things. She just likes to be there with other people and likes people to talk to her.

Lisa [00:03:23] For my daughter in particular, one of her biggest strengths is her resilience and her persistence. She’ll be in really, really challenging situations and her persistence is so much stronger than people give her credit for. It’s quite difficult for her to manage what a neurotypical child would manage. But she’ll keep persisting to fit that sort of environment. And I think that’s really admirable.

Jacqui [00:03:48] When her cousins play chasey with her by, you know, pushing her wheelchair around and chasing the other kids the faster you go, the more she smiles, you know? So she’s like a normal child, loves, loves going fast, loves being a bit of a ratbag.

Chris [00:04:05] Well, I think because he’s vision impaired, although looking at him, you wouldn’t think it, he just knows where everything is. And I think that’s just so amazing that he can just find his toys when he drops them, even though he can’t see them. And just. Yeah, just his enjoyment of life when he has so much going on. It’s just so amazing.

Jacqui [00:04:26] Her determination, I think because the barriers are there for her communication, she has to be very focused and determined to get anything across. Um, it’s much harder for her. So to watch her push through to get that message across is, I admire.

Chris [00:04:53] Well he loves his iPod and he loves music. He would not be anywhere without his iPod and music and just, he likes to be interacting and he loves little kids. So if they come up and squeeze his cheeks, he’s happy.

Jacqui [00:05:10] So a few years ago, Tahliyah’s little friend, she does ballet, and we went to watch her at a ballet concert, was sitting in the audience. I was sitting there with, um, tally’s sister and Tahliyah’s dad. And, um, my friend came out from backstage and said, oh Lenny wanted to see, um, Tahliyah backstage. And I was like I said, oh, okay, no worries. And Tally’s dad said, oh, he’ll go with it. And I was sitting there, and the concert started and I’m thinking, huh, she better get back here because Lenny will be up on stage in a minute. And then all of a sudden, the stage went dark. And then you could just see the kids coming out on the stage and there’s a little wheelchair that came out as as well. And I was thinking, maybe they just coming across the stage and they’re just gonna hop down because the stage wasn’t very high, and all the chairs went back up. But then now it stopped in the middle of the stage. And when the lights came on, Tahliyah was in a little Tutu in the stage she had, the chair was all covered in roses. Her dad was there, dressed in black and he was helping her dance, the same dance as the other kids. Um, they’d been, sorry, they’ve been organising it for weeks. And she’d been going to rehearsals. Unknown to me, her dad kept saying he was taking her to the shops to get a few things, but they were going to rehearsals going to the shops and then coming home. So that was amazing.

Jacquie Lee [06:47] Like all children, the mental health of children living with disability is not fixed. It occurs along a continuum, based on their inner experiences, their temperament, and their social relationships and supports. While mental health is not a fixed state, children living with disability are nonetheless at increased risk overall of developing mental health concerns. Next, we will hear again from Lisa, Jacqui and Chris as they discuss their children’s social and emotional wellbeing.

Lisa [00:07:17] She’s quite an animated person. So, when she’s happy, you know, she’s happy. Like any other child, she expresses her happiness through, you know, through laughing and smiling and just pure enjoyment. Sometimes giggling can also be nervousness and anxiety. So I know the difference as her parent, but someone else might say she’s really enjoying this thing. That sounds to me more like a nervous giggle. I’m not sure what’s happening here and I’m not really sure how I’m supposed to feel. So a little bit of it is getting to know the person and the individual.

Chris [00:07:50] If there’s any negative energy within a room, he will get upset and he’ll make that very you know, that everyone knows that he’s not happy about the situation. So that’s his way of communicating if he’s not happy with someone.

Lisa [00:08:04] For my daughter, for a long time, she couldn’t express her feelings and emotions. So that was always really challenging. And sometimes I don’t think she could even really understand or acknowledge her emotions. So as she’s grown older and we’ve given her a lot more strategies just to even name what you’re feeling. So we’ll use a strategy where we’ll say, ‘you look really happy, you look like you’re really enjoying this’. So we’re giving her a name for the feeling that she’s having and not just when she’s feeling upset or saying, you look really cross. I wonder what’s making you cross. But naming all of those emotions. You know, that’s a surprise. What a surprise. You know, if someone’s here that you weren’t expecting. So naming all of those little emotions. And I think that’s really helped her. And just acknowledging as well because you don’t always have to feel happy. And I think that’s a trap for people with disability, that any big behaviour or any challenging behaviours can be seen as being something about their disability, when really, we all have a whole gamut of emotions. We all have days where we feel a bit grumpy or a bit upset. And that’s nothing to do with the disability. It’s just, you know, the range of emotions, I think, for her helping her name and recognise them and acknowledging them, not just trying to solve them, but acknowledging them. ‘You feel cross today. I can see that you’re really grumpy, I wonder what that’s about’ has helped her a lot.

Chris [00:09:36] Kids trapped inside their bodies with a regular brain that like the normal stuff maybe an eight-year-old would like, can get really frustrated. It’s almost when you look back at a baby and you see that they’re trying to crawl, but they can’t and they’re really angry. So, it’s the same within disability as well. They get very frustrated and angry when they can’t do something that they really want to do.

Jacqui [00:10:01] She’s usually pretty happy when she gets her own way. Like, you know, like a normal 10-year-old, like every 10-year-old, when she’s happy, you get she’s quite relaxed. She will smile lots. She’ll probably do her little vocal, like her little chitter chatter. Um, when she’s active, when she’s kept busy, um, she just, she doesn’t like sitting around doing nothing. I don’t blame her. I’m not a big fan of sitting around doing nothing either.

Chris [00:10:31] He gets very upset, and he does do some self-harming too in his way to communicate that he’s not happy. So, bearing in mind that if he’s having a really self-harming day, we’ll then you know, he might have pain somewhere or just be not happy that day or woken up on the wrong side of the bed like most other kids do.

Jacqui [00:10:52] You’d have to learn what her cues of discomfort or, you know, something she doesn’t like. But generally, it is, you know, the tears, the bottom lip, the planking, going really stiff. They’re usually her little cues that say, you know, either please stop or I don’t like this.

Lisa [00:11:14] Her strategy is, as I said before, uh, just allowing her to have some autonomy in what’s happening. That’s the main thing for her and giving choices. Sometimes we might limit what the choices are and sometimes the choices aren’t things that can be, um, actioned, you know, there might be something that we just really can’t do, but to the best of our ability, if she expresses that she needs to do something, we’ll try to make that happen. And, you know, initially if we were out in the community, her resilience of being out and about was quite limited, but we would always make sure that if she expressed she’d had enough and she needed to go, we would make sure that happened rather than push through to a point where she would then dysregulate and be really unhappy with her own responses because that was distressing for her. And then I guess over time we’ve worked that she can tolerate more and more because she knows when I’ve had enough, someone will be there for me and will either remove me from this situation or help me through a challenge.

Chris [00:12:17] He would communicate in ways that he would self-harm, he would cry, he would punch himself if he wasn’t happy. So if he’s doing his exercises and he really doesn’t want to work out, he would just start biting himself to get out of doing it. So that’s just a way that he communicates his feelings in a very blunt manner.

Jacqui [00:12:39] My biggest challenge would be the communication barrier. You constantly have to try to sort of problem-solve I suppose to work out what, what the issues are. I tend to know her pretty well now, so I can get to the problem, the root of the problem pretty quickly. Um, but for people that don’t know her, it’s a little bit harder. Um, so I always feel that that is a barrier and like a huge challenge for her. But even when she’s having bad days, as soon as she smiles, even when your like, cause you can get frustrated, trying to work out what’s going on, what the problems are. But as soon as she smiles, everything’s okay. It doesn’t matter how bad your day is, she smiles, and everything is better.

Lisa [00:13:27] One of the things I’ve learnt from her is to partner in small enjoyments. And that sounds a bit strange, but to meet her in those little moments, whether it’s just being in nature and, you know, marvelling at really tiny little things in nature, I can’t even express it, but just meeting her in those moments is something that you probably don’t think about for someone who’s neuro-typical because they do share their experiences with you. Where from her we’ve really had to get at her level to, um, to partner with her in her engagement with the world, really, because she never really offered that shared engagement.

Chris [00:14:09] He’s vert in tune with people’s body language. So, there’s definitely people he doesn’t like, and he’ll let me know that he doesn’t like them, but obviously if he knows that someone’s generally interested in him and generally being nice to him, he actually really responds really well to them. Because obviously if you are enjoying something and you’re thinking that someone’s being nice to you, you actually feel good about yourself. So, to Sam, he’s actually feeling enjoyment within any situation, whether it be in a hospital situation or anything.

Lisa [00:14:40] Sometimes you’re not even aware of what’s eroding that resilience because it might be quite subtle. And because she doesn’t always verbalise, there might be worries or concerns that she’s not able to. So, it can be a little bit of a guessing game, but also, um, she’s very empathetic to people around her. So, if I can use COVID-19 as a perfect example, there is social anxiety at the moment that she may not understand the message behind it, or even the main concerns, but I can see how it impacts her anxiety because she’s feeding off of the, you know, the feeling that’s around her, that feeling state. So we’re always really mindful, even things that at times are enjoyable for other people. And I’ll use Christmas build-up as a perfect example. People are rushing around and they’re excited. There’s holidays. There’s, you know, shopping centres are busy and it’s noisier things like that can really impact her and erode her resilience. So we’re quite mindful of not putting her in intimidate environments like that where other people would think this is a fun time to be out and about. There are times that are really challenging for her. So we’re aware of those things that challenge her, I guess. And sometimes they’re not always obvious.

Jacquie Lee [00:15:55] In this podcast, we have heard parents talk about their children, living with disability as ‘whole children’, as well as their children’s social and emotional wellbeing. Stay tuned for part 2, where Lisa, Jacqui and Chris will discuss ways professionals can support the social and emotional wellbeing of their children.

We would like to thank the parents who have so generously shared their time and experiences with us today. You can learn more about supporting the mental health and wellbeing of children with disability in the Emerging Minds’ e-learning course, ‘Understanding child mental health and disability’. Thank you for joining us.

Narrator [00:17:00] Visit our website at www.emergingminds.com.au to access a range of resources to assist your practice. 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.