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

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

Jacquie Lee [00:00:08] Welcome everyone. My name is Jacquie Lee from Emerging Minds. This is part two of our podcast series, featuring a collection of parents talking about their children who live with disability. We’d like to acknowledge the expertise as parents and thank them for taking the time to share their wisdom with us.

If you haven’t already, please listen to part one of this series where you will hear our guests, Jacqui, Lisa, and Chris, talking about their children as ‘whole children’ whose needs hopes and strengths are just like any other child’s and about their social and emotional wellbeing.

In this episode, you’ll hear how parents and professionals might see a child’s social and emotional wellbeing, communication and behaviour, as just an outcome of their disability. But children living with disability can and do experience positive mental health, too. It is important to support children, living with disability, to express their hopes, preferences, and concerns, just like it is for all children. Let’s continue hearing from Chris, Lisa and Jacqui.

Chris [00:01:11] Any carer that comes into the home for the first time has just really overwhelmed by Sam’s disability because on paper he’s just out of this world, but then when you get to know him, really the medical stuff is in the background and he’s just a child trapped in a body that doesn’t work. So mostly carers take a couple of weeks to familiarise themselves with the family model. And obviously they wouldn’t be left alone with Sam within that two weeks. So it takes a while to get to know him.

Lisa [00:01:46] It’s been important for us to make sure that the carers that have come into our life, I spent a reasonable amount of time just helping them build rapport. Because if, if I don’t trust them to have her best interests at heart, or if I don’t feel that they know her and can understand her, I don’t feel like I can trust them in that role, I guess. So, there is a trust and you’re inviting people into your home and your life. So, you do really need to build that relationship. It is about relationship building. So, a lot of turnover of staff isn’t helpful. We always try to just have a very small group of people who stay with us for a long time.

Jacqui [00:02:28] Really all of her doctors, when she walks in, they’ve all got names for her. One of her doctors says ‘ah hello my friend Tahliyah’. They see her even when you’re walking through the hospital and she’s not even there to see them, they will stop and say hello to her, which is nice that they don’t ignore her. Even if it’s just a quick, hello, hey, how are you going? One of her doctors, we were there one day, and he was walking past, and he had his kids with him. He stopped; he introduced his kids to Tahliyah. He didn’t just talk to Tahliyah but he actually introduced his kids. Then his kids then turned and said, ‘hi, Tahliyah, how are you?’ and spoke to her. That was really nice, considering I never met them before and they were youngish kids, they would have been primary school age, but it was really nice to see.

Chris [00:03:14] So I’ve got quite a great network of support workers. Sam currently has three, two are support workers, and one’s a nurse. The nurse has been with Sam since we moved to South Australia. So she’s really, um, been part of the family. She introduces Sam to her kids who he really loves and just making sure that he’s included and also that his brother’s included in everything they do is really important to the family. And just thinking outside the box, like it might just be I’m at work and I come home and the washing’s folded and that’s one less thing I have to do before I go to bed, which means I can spend more time with the kids.

Lisa [00:03:56] For my daughter. It’s mostly around behaviour when she’s anxious. And again, there’re things that I know and understand because I know her really well. So, I would expect a carer would need to get to know what some of those cues are for her. Quite often, there’ll be around mild self-harm initially. So, scratching her skin or chewing her nails down or pulling her hair out, but quite quickly it can become bigger than that. So, I can kind of recognise those cues start straightaway and, you know, have some strategies around are the removing her from situations that she’s finding really stressful or, you know, giving her some strategies. Like I said before that timeout strategy of, you know, just let’s listen to some music or let’s come and sit over here where it’s a bit quieter, but if they’re not picked up, they can become quite problematic and they become quite ingrained behaviours again. So, um, as carers, I guess it’s knowing each child and knowing to recognise those behaviours, that they really are communication of, you know, of an anxiety or a worry.

Chris [00:05:04] There’s a lot going on inside the brain. And you know, it’s hard with nonverbal kids where you can’t actually tell what they’re thinking half the time. So just being patient, asking them lots of questions, being patient with their responses.

Lisa [00:05:19] I think one of the things I’ve learned is when a child doesn’t have great verbal communication or other communication skills, there’s a temptation to not always engaged, to speak over them and not always engage with them face to face or even acknowledge their achievements. But even when they don’t respond, I feel she always needs to know when she’s achieved and when she’s succeeded. And as she’s got older, I can see her enjoyment in knowing that she’s succeeded in something or that she’s managed a challenging situation. So I feel like that was really justified that we needed to always say ‘you did a great job, really good job’. Even if it externally, she didn’t acknowledge that she was hearing us and she’s got older, she certainly has responded to that. So I think it was important that we always did that always acknowledged the challenges and when she’d succeeded in the challenges.

Jacqui [00:06:20] Introducing themselves and having eye contact with them, remember that they have ears, they hear what’s going on by understand what’s going on. Making sure that they speak to the child and not just about them and over them, like, it’s really important for the kids to know that they are included in that, in those decisions being made. Reminding them that, you know, if they’ve got to do something, for example, they’re going to measure them or something or they’ve got to feel their hip or their ankle or something like that, that they do say, ‘I’m just’ what they’re doing. They’re going to say ‘I’m about to do this’, reminding instead of just going in and doing it without mentioning it.

Lisa [00:07:07] Communications are natural two way. So, if you have someone that’s not making those responses, it’s really easy to just disengage from that. And then you’re just doing to not doing with, so yeah, that’s something that I’ve learned over the years to stop and make sure that she’s engaged.

Chris [00:07:24] When the carers actually get to know him, they can read, um, he can communicate yes and no with his eyes. So they can just ask him lots of questions. Like, do you want to drink? Are you hungry and all that? And he will respond with a yes and no, and mostly you’ll get what he’s wanting, and you can kind of fix it. And sometimes he might just want to go to sleep and you’re annoying him too much. But yeah, you do get to know him, and you do read the body language and he can communicate effectively that way.

Lisa [00:07:58] When she was really small, the only toy that she really enjoyed were those sort of cause and effect toys where you’d put a popper in and you know, a ball would pop out at the other end or, you know, you’d press a button and there was an animal noise. So it always had to be that cause and effect. So it was just delighting, even if she didn’t respond, delighting in that and verbalising. ‘Wow, what was that? What did you do? What did you hear?’ And just maintaining that always. So that you’re the person doing the communication, even though you’re not getting that feedback, just still persisting with that. It’s meant a lot to her. I can tell because as she’s got older and her communication skills have improved, there is that response now, you know, she’ll, she’ll, you know, do that ‘wow’. It’s quite animated.

Jacquie Lee [00:08:44] So far in this podcast. We’ve heard parents talk about how professionals engage with their family and children and support child wellbeing. Do any of the scenarios discussed, sound familiar to you? As you keep listening, can you reflect on the families you work with and how you may be able to recognise and support children’s social and emotional wellbeing in your own work?

Jacqui [00:09:06 ] Not all children are the same. So it’s really important to get to know the child, understand the child, find out what they like, don’t like, all that sort of stuff so that he can help them do what they want to do.

Lisa [00:09:22] When children are young, you really are working with the whole family. Parents need support because they’re just learning as well. And I always think when you have a typically developing child, there’s kind of a roadmap and some predictable milestones that you’re expecting. When a family has a child with a disability, it’s like, you’re going, off-road on the, you know, the unmapped journey where you’re kind of just making it up as you go, I guess, and reacting to what works for your child. So families need a partner in that. Someone that’s going to help support them. It certainly has impacts on the family unit. And we’ve had so many carers through our home over the years, and we’ve really tried to limit so that the people that are coming into our home have a good, strong relationship with our daughter because they almost become part of your family. People without a person with a disability in their family don’t have all of these external people coming into their lives all the time. So we’ve tried really hard to make sure that the people that are in our life have built a strong relationship with all of us, not just with our daughter, but with all of us. Because they do become part of that unit. Because they’re not just supporting her, they’re supporting the whole family.

Jacqui [00:10:39] It’s harder for these kids. Black kids are non-verbal, especially who can’t get that out what they want to say. And so to be patient with them and to get to the bottom of what’s going on or what they want to try to get across, allow them time to respond.

Lisa [00:10:59] It’s been really important to us to make sure that our daughter has the most amount of independence that she can have with her disability. So we’ve very much relied on support workers to provide that for her. She’s a teenager now. So if you’re a family with teenagers, they wouldn’t be spending all of their time with mum and dad, but because of the disability, she spends more time with us. So we’ve certainly had carers in our life to support her, to have that time away from us and to have that independence and that autonomy in her life. It’s really, really important, not just for her, but for us as well. We rely on each other as a family unit hugely. And sometimes it’s difficult to know. You know, I look at my husband and myself sometimes and think the main role in our life is as her carers and have to sometimes step back from that and take care of us and our relationship because we can’t support her if we haven’t worked on that as well. So we’ve certainly relied upon carers to relieve some of that care role so that we’re able to just be parents, sometimes not carers of someone with a disability.

Jacqui [00:12:15] That means heaps to me when they do that, because by them acknowledging her emotions, acknowledging her when she’s frustrated, telling her when she’s happy telling her when she sad, telling when she’s frustrated, telling her that ‘it’s okay, you can have those feelings’, they’re normal that’s important. Mirroring, um, copying like basically what her feeling is, so she can see what that feeling is as well. Not just telling her what she’s doing but showing her what it is. Telling her that when she’s frustrated, that’s okay. Use your frustration to push through, to be determined. When they’re doing that with Tahliyah I know that Holly is okay with them, that they’re going to put her wellbeing first before whatever their profession is. That I can sit back and let them work with Tahliyah and get Tahliyah to do what they’re there for.

Lisa [00:13:12] I think for moms in particular, it’s really important to remember you just need to be a mum and to outsource some of the other care stuff. And the therapy NDIS has created that environment a little bit, were we need to be therapising our children all the time, where sometimes I think moms in particular have to step back from that and just be mum, be that safe place, be the nurturer and not the carer or the person that’s pushing for development and communication and, you know, fitting them into a school model or just to be that safe parent. Sometimes it’s hard to relinquish that to carers because you feel like, you know, this person better than anybody else, but it’s important to do it, to make sure that someone else can be that person doing the therapy and you can just be doing the parenting.

Chris [00:14:02] It’s important to actually go and spend time with them out in the community, see what they’re doing, learning how they interact and not just like oh you see them once and then know that, you know, everything because obviously each person is different and unique to their disability.

Lisa [00:14:21] We’ve always had a, a plan or almost two key to me document for our daughter that the carers can use where, you know, it will explain things that challenge her. So if they’re out and about in the community and they already know this environment might be challenging for her, but also giving them an idea of what those external cues might look like. So that they recognise them straight away, rather than just waiting for it to happen. Having them prepared like this might be a challenge for her. And if it is, this is what we would do. And I think that consistency certainly helped. As I said before, our daughter’s resilience has grown because she knows there’s always going to be somebody that will remove her from a situation that gets too challenging. And I think that’s probably the biggest message we give to our carers as well. Don’t push her through something that’s really, really challenging. See how she goes, recognise when things might be starting to build up, the anxiety might be starting to play a part and then give her the option. Do you want to go, or do you want to stay? That’s worked for her.

Jacqui [00:15:31] I don’t want people to feel bad if they don’t do those things. Like if they forget to introduce themselves, or they are talking to a parent over the top of the child, something like that it happens. But when you catch yourself and you remind and you realise you’re doing it, then just try it next time to try to fix that, um, where we’re all guilty of it. I do it. There’s been times where I’ve done her. Um, but then I go ‘ ups sorry Tahliyah’. And, um, and I try to explain things to her. She usually lets me know though, if I don’t include her so if I forget she’s my little reminder. But yeah, he, it’s just, you try and fix it next time and hopefully things improve.

Lisa [00:16:18] I think people who do it well will direct all of the questions to her. Even knowing that I’m probably going to be the person responding on her behalf, but just including her in the conversation at all points. And it might just be as simple as saying hello, because I’ve had carers that will do that. They will walk in and they won’t even make eye contact with her at all. And just direct everything to my husband or myself. And that’s a big red flag for me.

Chris [00:16:46] Just getting to know him, you know, all his little quirks and you can really understand his body language and what he’s saying.

Jacqui [00:16:53] My biggest hope for her is that she’s just seen as her, that people include her. They speak to her and, um, yeah, just treat her like you would anybody else.

Jacquie Lee [00:17:08] In this podcast we’ve heard from parents about ways in which professionals can support their children’s wellbeing. Again, we would like to thank Chris, Lisa and Jacqui who have so generously shared their time and experiences with us. You can learn more about supporting the mental health and wellbeing of children with disability in Emerging Minds, e-learning course Understanding child mental health and disability. Thank you for joining us.

Narrator [00:17:34] 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.