Transcript for
The team around the child: A mum’s story of her son’s neurodiversity
Narrator (00:02):
Welcome to the Emerging Minds Podcast.
Dan Moss (00:07):
Hello, my name’s Dan Moss. Today, we’re talking with Bec Edser. Bec is a child and family coordinator at Emerging Minds and has been working closely with us on developing two courses, Child-centred and family-focused practice with children with disability and Child-centred and communication-focused practise with children with disability.
Dan Moss (00:29):
As well as Bec’s role with us at Emerging Minds, she also is a mother. One of her children, Wolfie, has a fairly recent diagnosis of neurodiversity. And as we’ve gone about these courses in disability, Bec has been willing to share some of her experiences with practitioners both before and after her son’s diagnosis. Bec, we really appreciate you joining us today. Welcome. Bec, I wonder whether you might start off by talking a little bit about your experience as a mum.
Bec Edser (01:02):
Sure. I have a beautiful six-year-old, neurodiverse son who was diagnosed probably a year and a half ago. But we always thought there was something special about him. He has some amazing abilities and he also has a lot of challenges that we are trying to help guide him on. I’ve just learned so much from being his mum from him and from all the team that are around him supporting him.
Dan Moss (01:33):
Bec, I’m wondering, can you tell us a little bit about the process for receiving the diagnosis and your reaction and the family’s reaction to that?
Bec Edser (01:41):
Sure. When Wolfie moved to a new childcare when he just turned four, we noticed that he was having a lot of trouble with transitions coming into the service in particular. There was a beautiful educator there who really spoke to us as parents in a really kind way about what might be happening for Wolfie. We noticed things at home too about how he seemed really dysregulated and how he was quite different from his siblings in lots of ways and we had wondered about what might be going on for him.
Bec Edser (02:16):
So I guess she first spoke to us about sensory processing disorder, which I’d never heard of up until then, and we explored that and found out about that. She suggested we might engage with an OT, which we did, and she’s been on Team Wolfie right along the way. She’s such a fantastic advocate and practitioner for him. It takes a long time to go through a diagnosis for autism, so she suggested that we might start that process. It might mean that comes to what it would be in the end, but that it was something to just maybe give a go just to find out a bit more.
Bec Edser (02:58):
So obviously, we were talking with his GP right along the way, we engaged with a paediatrician who started the autism assessment process. That was pretty horrible. It’s so deficit-based. We want to find the good in our son and build him up so he’s strong and happy and all that, and really had to pick apart all the things that were going wrong. Yeah, I found that very challenging and it was a really hard time for the whole family. There was this one real ‘aha’ moment when my partner and I went into the service to participate in an activity for NAIDOC Week.
Bec Edser (03:35):
My partner was running the session and all the children in the whole centre were sitting around just listening and engaging with the session, but Wolfie was just running around and screaming in the background. It was so extreme. I was meant to be supporting my partner in what he was doing, but I was just absolutely distracted and concerned about what was happening for my son. So probably, within six months of engaging with the OT, she was fantastic that in that most times she’d come into the childcare centre and work with him there in the spaces that he was finding challenging and working out ways that he could manage the things that he was experiencing.
Bec Edser (04:15):
It was very challenging going to the paediatrician with Wolfie. He had to be there while we talked about him, which he can’t handle. He was grabbing everything in the room and he was going under the desk. We knew that he didn’t like us talking about him while he was there, and especially the things that we needed to respond to about him. It was insisted that he was in the room. He escaped a few times and ran and off down the street. I suppose we know that’s him saying, “I don’t like this.”
Dan Moss (04:46):
Bec, it sounds like within a very relatively short span of time in your son’s life, in Wolfie’s life, you were involved in lots of professional appointments, some of which sounded like a reasonably supportive or positive experience, some of which Wolfie and probably yourself would say weren’t so supportive. At this time, what was going through your mind and your partner’s mind in terms of the way that you were parenting Wolfie?
Bec Edser (05:14):
Yeah, it’s been such a big learning journey. We started off not knowing anything much about what we needed to do. So it’s been a really big thing to have to educate ourselves about what we did need to do and how we needed to work with our son. We’re still absolutely on that learning journey. We’ve had some great people along the way to guide that. I mean, I’ve mentioned that fantastic educator at his childcare, that when he started school, then he had a really wonderful teacher who just held him for the whole year and guided him through his first year of primary school and made such a difference to him.
Bec Edser (05:54):
We also engaged with a speech pathologist, aside from the one who was undertaking his assessment, who is also on his team and is just really essential to helping him go through his life. He’s really lucky he has the OT and the speechy visit him at school. Sometimes they’ll do sessions in class with him and help the teacher with how they need to work with Wolfie. Sometimes he’ll come out of the class and he’ll work on some specific things with them. I feel like the communication with them and us has been really great and with the school, which has been really important to making that work.
Bec Edser (06:34):
But having said that too, I do feel like his case manager a lot of the time and I find it really hard. I want to just be his mum. I’ve taken on this role of managing all the services that come in and wrap around him and being the conduit point for information and communication between all the different parties working with him.
Dan Moss (06:57):
Bec, I’ve noticed you mentioned a couple of times this idea of they’re on Team Wolfie. Where did this expression come from?
Bec Edser (07:05):
I imagine it was probably my partner, Wolfie’s dad, who said that. When we first met with the OT, even before she’d met with Wolfie, we were both really craving information about how we could help him. I think he invited her to be on Team Wolfie and to help be an advocate for Wolfie alongside us. Yeah, I think it was a really nice way of thinking about it and I’ve just held onto it since then and invited other people onto the team.
Dan Moss (07:34):
So this initial appointment with OT, that seems like it was quite a pivotal moment in your lives and possibly Wolfie’s life in terms of starting to develop this team around the child. Can you remember your initial impressions or how you felt in terms of experiencing that initial consultation?
Bec Edser (07:56):
It was mixed because before we started on this journey, we just thought we were shit parents. When we thought, “Oh, there might be some things going on, the… ” I think I’m very hard on myself and I’m always thinking there’s going to be more that I need to be doing. But I think it was a relief too just to know that there’s people we could bring in that were going to help Wolfie and going to help us be able to help Wolfie.
Bec Edser (08:26):
Initially, meeting with the OT, I really appreciated that she and other professionals, when we first started out working with them, would take that time to talk with me and my partner without Wolfie there, because eventually he’s going to probably realise and we’ll talk to him about how he has this diagnosis, but at the moment we want him to feel like any other kid.
Dan Moss (08:50):
You talked about this idea of feeling like a shit parent before the diagnosis process. Was there something about having that first conversation with the OT who was on Team Wolfie and possibly Team Bec and Team Lou as well by the sounds of things? What was it, if anything, about that first conversation that might have started to change your mind about the sort of parent you were or had been?
Bec Edser (09:16):
In that first meeting, she very kindly pointed out to us all the things that we were doing that were really helpful already and has continued to do along the way when that doubt creeps in. But she also recognised how much other stuff we had going on in our lives, the busyness that happens and maybe an extra layer that we did have and have tried to pair back from possibly as well since to be able to do more and support Wolfie more in particular, but all the kids.
Bec Edser (09:51):
She had been making notes and she’s just always, she goes, “you have so much going on in your life. You were doing a lot.” It was really affirming and really helpful for me because I am hard on myself. I’ve appreciated that about her so much along the way. Now, it’s been almost two years since I would’ve first met her. There’s points and I’ll meet with her and she’ll help me reflect on where we’ve come in that time in working with Wolfie and where he’s come obviously, but what we’ve been able to do as a family and the things we have put in place that can help Wolfie in that journey. Yeah.
Dan Moss (10:31):
So part of being on Team Wolfie then really is this idea that she can help support maybe at those times where you are being a little bit hard on yourself and reflect on the progress that your whole family really has made over the last couple of years.
Bec Edser (10:47):
Yeah, absolutely. Yeah, she’s done that right along the way. I know it’s helped me a lot as probably the main person who’s there organising everything for Wolfie and I don’t often take a step back and go, “oh, I am doing a lot here.” Yeah.
Dan Moss (11:07):
What do you think that’s meant, the support that you’ve had from the OT and sounds like a speech pathologist as well and a really great teacher? What do you think that’s enabled you to be able to do in your relationship with Wolfie? How has that influenced you and the whole family really?
Bec Edser (11:27):
Yeah. I think we’ve had so many great strategies shared with us, which is something that it’s done and that’s been very practical. But that has helped the relationship with Wolfie, because I think before, we would always have the wonderings about why is he not connecting with us in conversation around things? And taking that on like there’s something we are doing that’s having him not connect with us in that way. But being able to understand what’s behind the ways that he doesn’t respond sometimes or other behaviours and recognising it for what else it could be has been really helpful in thinking about our relationship, I suppose. Does that make sense?
Dan Moss (12:12):
Yeah. I want to just go back to that example you gave where he ran away from a particular appointment which he wasn’t enjoying. You talked then about that being a real strong example of where he uses his behaviour as communication. Has he been, through his behaviour or being present, being able to be a key factor in these strategies that have been developed with professionals?
Bec Edser (12:37):
Yeah. He does show us a lot with his behaviour. Just last week, we had to take him for an x-ray and he was trying to escape from that. It’s like we had to restrain him and it’s really tricky. But he’s also really articulate. He said some really profound things which have just helped us be able to understand where he’s at and what kind of communication does work for him. Probably the earliest example, I think about childcare. I mentioned he had trouble with the transitions and coming into that space.
Bec Edser (13:11):
It was quite a loud centre. They had their separate rooms, but they’d all be coming together and in the yard. Obviously in that story, I told about the activity that we came in to do as parents. He does struggle with loud noises that aren’t him. When he was coming into childcare, it was very loud compared to sitting in the car driving to childcare. For us to recognise, I suppose, that that was an issue for him, I think I remember having a chat with him in the car after childcare one day and we said, “well, what is it that’s tricky about going in?” And he said, “I don’t like the chatter, chatter, chatter.”
Bec Edser (13:48):
We knew then that was his experience. So we would say, “what can we do to make the chatter, chatter, chatter not as big for you when you go into childcare?” He did wear some earmuffs for a bit, but it was also he had other things at different times. Whether it was the educators or the OT, they’d find a space. There was a little corner where he could come and do his little activities while he was trying to adjust and acclimatise to the new environment that he was coming into. He could sit and he could do his Sudoku in the morning or do a puzzle or something. When he felt ready, then he could go and join the rest of the class.
Dan Moss (14:26):
The example you just gave was an example where you, as much as possible, have used the child’s language, in this case the chatter, chatter, chatter. Can you talk to me about how important that’s been in professional engagements, that practitioners are able to use your child’s language in developing strategies or in thinking about the problem?
Bec Edser (14:51):
Times when Wolfie’s been able to tell us when he’s in a good state and he’s communicating well with us and he’ll say one of these statements which describes something and we’ll go, “oh, that’s significant for him.” And I’ll share that with the OT or with the speechy and say we’ve realised this is something that’s important to Wolfie. Then they will take that into a session and be able to talk to him about it and use that language in the session.
Bec Edser (15:17):
I know the OT did use that chatter, chatter, chatter because we shared that with her. And that was helpful because Wolfie understood what that meant. On the flip side, I can think about when that hasn’t been done and he can’t connect with some of the language that gets used to talk to him about what’s happening for him. It makes such a difference.
Dan Moss (15:35):
What’s it like for you as a parent or in a professional setting where you’re saying that a professional’s not quite connecting with your child?
Bec Edser (15:45):
Oh, it breaks my heart. He’s had so many great people on Team Wolfie, but some really standout examples that always come to mind where I think you just you’re not getting my child and you’re not listening to us as his parents or you’re not listening to the OT, you’re not listening to Team Wolfie, you’ve got your own ideas about what you think is going on for him and it doesn’t fit with what everyone else knows is going on here.
Dan Moss (16:15):
Yeah. It sounds like you guys obviously have some fairly strong criteria about what you need to be on Team Wolfie and what maybe behaviours mean you’re not. But it sounds like he does as well. Through his behaviour, he’s making those it in a session around whether this is a safe and supportive space for him, whether it’s not. Do you think your criteria for you as parents, but also for your child, are similar?
Bec Edser (16:50):
Yeah. I would say they are. Wolfie, he’s pretty straight up, he’s pretty literal. I know if we’re in an appointment and he’s not connecting with what we are doing, he’ll go, “are we finished? Can we go now?” He’ll run out the door. We have had to lock the door at appointments he needs to stay at. But he tells us with his behaviour, even with what he says. It’s quite clear to us when he feels that someone’s on team.
Dan Moss (17:14):
I’m wondering how given that you do have these really strong criteria around what constitutes being on Team Wolfie and what doesn’t, what are the differences that you notice for yourself in your own reactions when you are working with… like the OT that you’re talking about, where you’re feeling supported and affirmed and acknowledged compared to sessions where you haven’t felt so acknowledged?
Bec Edser (17:44):
There’s this thing that happens and I imagine it’s quite common for a lot of kids experiencing some of the things. At home, we are his safe place and we get everything and it’s big and it’s hard and we just go through it. But no one else sees that exactly. I guess the OT, the speechy, other professionals, they know that that’s happening. They might be some stuff at school or other family, but they see this child differently to us. They don’t get exactly the same Wolfie. It’s affirming for us to have these professionals that say, “we hear what you’re saying.
Bec Edser (18:23):
We see what you’re talking about and we know that you’re going through a hard experience with your child. It’s hard for him, it’s hard for you, and we’re going to help you with that. We’re going to walk with you and support you on this journey.” That’s really helpful because even friends and family mightn’t see exactly what we are seeing and mightn’t experience exactly what we are experiencing and mightn’t know how hard it is exactly. But I think some of the professionals, they really do because that’s what they work with and they hear it from other parents. That’s really affirming for us.
Dan Moss (18:59):
There’s something important in practitioners getting to know the same Wolfie that you know through their conversations with him, but also through finding out as much information as they possibly can from you and treading you as the expert in your child’s life.
Bec Edser (19:16):
All credit to Wolfie. He’s amazing at masking, that thing where he’ll go to school and he contains all this stuff all day. It’s massive for him. He holds it in and then he comes home in the evening and it’s like a big explosion. That impacts the whole family. No one knows what that’s like except our little family unit. I mean, while it’s a great skill for him to have to be able to know how to behave in certain social situations and be able to implement that, we still need to work out ways that he can have outlets during the day. Like a day at school, cognitive breaks, that he doesn’t carry that through the whole day and then it’s massive for our family in the evening and hard for the other kids as well.
Dan Moss (20:01):
I want to ask you a little bit about this idea of time as well. Bec, knowing you, I know that you work really hard and have strong demands in your job. Then also, you have a family and other children as well. How have you thought about structuring time to do everything that you need to do, but also still providing that extra support which Wolfie needs?
Bec Edser (20:27):
Sometimes, I really don’t know how I do it, Dan. Obviously, I work, I’m a working mum, and my partner works. Yeah, it’s a lot. I did cut down one day a week at work. Essentially, that’s my mum admin day, I call it. But it is often appointments for Wolfie, trying to manage all the things that come up. Time is so precious. I constantly have guilt about time, mum guilt, like I don’t have enough time for all my kids. Yeah, obviously, there’s a lot to consider for Wolfie and I feel guilty for the other kids.
Bec Edser (21:07):
But it is trying to find those moments and trying to connect with each of the kids in their interests. Sometimes in our family situation, I guess, it’s me and my partner working really closely together and communicating so well because if we don’t, how do we manage all this? And some of the dynamics are really big around siblings and we are still navigating all that. I think we’ve got a long way to go. You try as much as you can to build in the structure and the routine in what you do, in the home life, and that is so helpful not just to Wolfie, but the other kids as well.
Bec Edser (21:41):
But yeah, we stumble along the way. Like I said before, it’s just a continual learning thing. With Wolfie, we know that he does really well with structure and routines. He also does really well with visuals. So we have a lot of charts up around the house. I’ve tried so many different ones which are often suggested by the OT, but also courses we’ve done with autism let’s say and positive partnerships, these services that we can access. And Wolfie responds really well to this chart. Wolfie won’t often eat the same meals as us, so I need to find out what he will eat, what I can get him to eat of any meal.
Bec Edser (22:22):
So he has one chart and it just says, “I would like to eat,” and he has a whole bowl of pictures of foods that we know that he’s comfortable with. So I can ask him any morning, I can go, “Wolfie, what do you want for breakfast?” I can ask him 20 times and I won’t get an answer, but if I give him that sheet, he knows what it says, he knows where his pictures are and he can stick them on there and I’ll know what to get him for breakfast.
Dan Moss (22:47):
Sounds like there’s so much that as a mum you need to navigate, which is so much more than only the specifics of your child’s disability. So when you work with a practitioner, is it important for them to take a holistic approach and help you to think about navigating all these challenges rather than focusing only on what Wolfie can’t take?
Bec Edser (23:10):
Oh, absolutely. There’s been so many different areas that we’ve needed to work on. We’ll often just go, “what’s the biggest at the moment? What do we need to pick out of… We’ve got troubles with sleep, troubles with food, troubles with listening, different things, well, what’s the biggest thing? What’s getting in the way the most of his daily functioning?” And that’s what we’ll work on. They’ve put out suggestions, we’ve tried things. Sometimes it works, sometimes it works for Wolfie.
Bec Edser (23:38):
Sometimes it needs to work for Wolfie and the family as well. So it’s a lot of trial and error. I think the great thing, and particularly with his OT, she’s giving us these strategies. But she’s not hard on us if it’s not going to work. She knows that there’s so many other factors in Wolfie’s world because she’s taken the time to hear everything else in our life. If we haven’t managed to work on his sleep, when we’ve had a big session talking about it and planning out how we’re going to do it, that’s okay too. We can come back to it, we can give it a go another time. Yeah.
Dan Moss (24:12):
As a mum, are you able to take that OT’s messages or that voice, her voice, with you when maybe something’s not working so well, where you’re going to give yourself a hard time? Are you able to hear her messages about giving yourself a break or?
Bec Edser (24:27):
I’m not great with that. But no, I try and remind myself, “we’re doing okay. We can let that go at the moment, we’re focusing on this,” sometimes. You can have the best intentions to implement all these strategies and then it comes down to a specific day and… For instance, Monday this week. Monday’s always hard. You’ve had the weekend, everything’s slower, and then he goes back to school and it’s that transition and it’s just all the sensory input, it’s everything. Then we always know Monday nights are going to be huge.
Bec Edser (25:03):
But he had a relief teacher on Monday too, so it was extra huge. You can have the best intentions to try out this thing the OT said, to try out something the speechy suggested and then one of the other kids has got something going on as well. That whole dynamic, it doesn’t always happen. I guess we do need to always just try not to be so hard on ourselves and go, “yeah, we are doing okay,” and probably ask for help too, which I’m not good at doing, but that’s important.
Dan Moss (25:31):
It sounds like you’ve had some negative experiences with practitioners, but also what you’ve been able to describe today is some overwhelmingly positive influences of practitioners being on Team Wolfie. What do you think that meant for him and meaning for him as he grows up and starts to make sense of both himself and his diagnosis?
Bec Edser (25:52):
Yeah, I’m sure it’s very helpful and I’m sure it’s all contributing to who he’s going to be able to become as he goes through life. Yeah, I hope we’re doing enough. For me, I’m always thinking, “what can I be doing more?” But I think he’s very fortunate. I suppose he was quite young to get some of these things in place and I think that is going to do well for him as he goes along.
Dan Moss (26:18):
Bec, I’ve really appreciated your insights and you sharing your experiences with us today, so thank you very much.
Narrator (26:26):
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.