WEBVTT - Episode 19: A PhD in Parenting - raising a neurodivergent child 0:00:00.680 --> 0:00:03.760 Just a note, this episode does contain explicit language. 0:00:06.600 --> 0:00:11.840 Oh would you like a glass of wine? 0:00:13.039 --> 0:00:15.720 It's a sunny Sunday afternoon and I've rocked up to 0:00:15.760 --> 0:00:18.680 a get together in East Auckland at the beautiful home 0:00:18.760 --> 0:00:20.880 of Natalia and Peter Parsons. 0:00:21.920 --> 0:00:23.680 We're just having a little bit of a mum's ketchup 0:00:23.720 --> 0:00:24.120 out here. 0:00:24.520 --> 0:00:27.520 The mums are so lovely, but it's actually their partners. 0:00:27.560 --> 0:00:30.520 I'm here to see. This is a dad's support group 0:00:30.640 --> 0:00:33.720 which Peter started for fathers of high needs kids on 0:00:33.760 --> 0:00:36.879 the autism spectrum. But the guys have gone for a 0:00:36.920 --> 0:00:40.240 walk in the nearby bush. It's what they call chicken time, 0:00:40.400 --> 0:00:43.520 where they can talk confidentially about whatever's on their mind. 0:00:44.360 --> 0:00:47.120 Peter's wife, Natalia says that for many of them, this 0:00:47.200 --> 0:00:49.280 group is a place of refuge. 0:00:50.080 --> 0:00:54.760 That's is Jordan, and you can see that they love 0:00:54.840 --> 0:00:56.680 being here and having a beer and catching up and 0:00:56.880 --> 0:01:00.160 just being noticed. And it really broke my heart to 0:01:00.240 --> 0:01:03.600 hear that some of the dads say that I have friends, 0:01:04.600 --> 0:01:06.800 that it's hard to have friends, and it's hard to 0:01:06.840 --> 0:01:10.840 have friends. Are understand being a special need parent is 0:01:11.120 --> 0:01:15.880 so hardened so many, so many ways. But there are 0:01:15.880 --> 0:01:18.319 glimps of happiness in our lives that we just have 0:01:18.400 --> 0:01:21.520 to grab and hold on to otherwise we stop living. 0:01:21.560 --> 0:01:23.560 And what's the point, you. 0:01:23.520 --> 0:01:27.520 Know, Kioda. I'm Sonia Gray and this is no such 0:01:27.600 --> 0:01:31.200 thing as normal theories too. I am diving into the 0:01:31.200 --> 0:01:35.560 complex and fascinating world of neurodiversity. I'm not an expert, 0:01:35.720 --> 0:01:38.679 but my daughter is neurodivergent and a few years ago 0:01:38.880 --> 0:01:42.800 I was diagnosed with ADHD. In the series, you'll hear 0:01:42.800 --> 0:01:47.039 from experts and from many wonderful people who experience the 0:01:47.080 --> 0:01:51.280 world in a unique way. We're looking at neurodiversity from 0:01:51.320 --> 0:02:03.400 the inside. This is the first of two episodes focusing 0:02:03.480 --> 0:02:08.880 on parenting and neurodivergent child parenting. Yes, of course it's rewarding, 0:02:09.080 --> 0:02:12.200 but it's tough, and when your child is wired differently, 0:02:12.560 --> 0:02:16.760 the tough bit gets multiplied. The challenges are layered and 0:02:16.800 --> 0:02:19.839 they are numerous. What these parents need most of all 0:02:20.080 --> 0:02:24.480 is understanding and support. In these episodes, you'll hear from 0:02:24.480 --> 0:02:27.520 a range of parents who are on this road. It's 0:02:27.560 --> 0:02:31.280 a road with no roadmap. They all agree this experience 0:02:31.440 --> 0:02:36.480 changes you profoundly. There are great unexpected rewards, but it 0:02:36.560 --> 0:02:38.399 is a PhD in parenting. 0:02:42.120 --> 0:02:44.680 I've got family, I've got close friends, We've got a village, 0:02:44.760 --> 0:02:46.639 you know, friends that are always willing to help out, 0:02:46.680 --> 0:02:49.239 but at the end of the day, they will never 0:02:49.360 --> 0:02:51.760 fully understand how tough it can be. 0:02:52.840 --> 0:02:55.880 It's Peter. He started this support group two years ago 0:02:56.000 --> 0:02:59.239 with a simple post on Facebook, and it's grown into 0:02:59.240 --> 0:03:03.320 something quite beautiful. The guys here come from vastly different 0:03:03.320 --> 0:03:06.000 backgrounds and walks of life, but they see each other. 0:03:06.080 --> 0:03:09.480 It's far though. The idea came when Peter stumbled upon 0:03:09.560 --> 0:03:12.960 similar groups online but they were based overseas. 0:03:14.440 --> 0:03:17.919 Just seeing the conversations that were being had with these 0:03:18.000 --> 0:03:20.480 dads on these other platforms, I thought, man, we need that, 0:03:20.639 --> 0:03:23.440 you know, we need a space, like a safe space 0:03:23.480 --> 0:03:25.360 for dad to be able to just to chat and 0:03:25.919 --> 0:03:29.079 talk about the struggles, you know, the small victories that 0:03:29.919 --> 0:03:32.080 to anyone else would be like, oh, that's nothing, but 0:03:32.160 --> 0:03:34.480 twice it's like, man, my boy said, it's first word. 0:03:35.160 --> 0:03:37.680 It's that sort of thing. So when I put a 0:03:37.720 --> 0:03:40.120 post up there two years ago, I was blown away 0:03:40.160 --> 0:03:43.240 by the response, like hundreds of messages, but it was 0:03:43.280 --> 0:03:47.240 mostly from the mums, the partners. The thing with Dad's 0:03:47.320 --> 0:03:50.560 is like we struggled to open up and share. You know, 0:03:50.560 --> 0:03:53.880 it's always been a battle in society for us. And 0:03:54.080 --> 0:03:57.000 all these guys, like every one of them have turned up, 0:03:57.600 --> 0:03:59.320 they've all said the same thing. It was so hard 0:03:59.360 --> 0:04:01.520 for them to come to the first visit. But then 0:04:01.560 --> 0:04:03.839 once they're here and they see you know, what we're 0:04:03.880 --> 0:04:06.600 doing and what we're sharing, what we're talking about, They're like, man, 0:04:06.640 --> 0:04:09.080 these guys are all on the same journey. 0:04:09.440 --> 0:04:16.000 Yeah, totally. It's so hard to find people that understand 0:04:16.360 --> 0:04:20.599 because unless you're living it, you can't quite comprehend. It's 0:04:20.600 --> 0:04:23.080 not just the day to day stuff. It's the worrying 0:04:23.120 --> 0:04:30.080 about the future, it's grief, It's all these things so true. 0:04:30.240 --> 0:04:31.000 That's so true. 0:04:31.839 --> 0:04:35.760 Peter's son, Jordan, is eleven. He's a sweet and gentle kid. 0:04:36.400 --> 0:04:40.760 Jordan is autistic with global developmental delay, and he's nonverbal. 0:04:41.520 --> 0:04:44.520 My daughter's challenges are very, very different, and I can't 0:04:44.520 --> 0:04:47.640 even pretend to compare them to this situation. But Peter 0:04:47.680 --> 0:04:50.680 and I both understand the grieving process and the pain 0:04:50.760 --> 0:04:53.560 of knowing your kid will struggle in the world, and 0:04:53.960 --> 0:04:56.080 we talk about the initial denial. 0:04:59.320 --> 0:05:05.600 The first few years were probably harder and seeing people say, oh, 0:05:05.680 --> 0:05:07.480 you know, I wouldn't change my boy. You know, he's 0:05:07.520 --> 0:05:11.320 find the way he is and I'm like, hell no, 0:05:12.120 --> 0:05:15.839 this is how can you be happy with the fact 0:05:15.839 --> 0:05:20.920 that your child is non viable? But like you said, 0:05:21.000 --> 0:05:23.800 as the years have gone by and Jordan's grown up, 0:05:23.920 --> 0:05:27.120 and it's like, man, he is an amazing kid. 0:05:27.839 --> 0:05:30.279 You know, he's got a harder goal. 0:05:31.560 --> 0:05:36.360 He's taught me so much around empathy and because of him, 0:05:36.720 --> 0:05:38.840 you know, I've got to meet all these great guys 0:05:38.839 --> 0:05:43.560 and you know, just created this whole new community, you know, 0:05:43.640 --> 0:05:47.599 whereas if we weren't going down this road, you know, 0:05:47.600 --> 0:05:49.560 we wouldn't be doing any of this. You know, we 0:05:49.560 --> 0:05:52.599 wouldn't be meeting all these families and trying to help 0:05:52.640 --> 0:05:53.040 each other. 0:05:54.200 --> 0:05:57.800 Yeah, it's it's hard and it's humbling, but it's it's 0:05:57.880 --> 0:06:00.479 kind of real ay, and you know there will be 0:06:00.520 --> 0:06:04.160 many other people getting together on a Sunday afternoon around 0:06:04.279 --> 0:06:07.240 the country. But when you come to somewhere like this, 0:06:07.400 --> 0:06:12.280 it's like you can't pretend everything sweet, you know, so 0:06:12.400 --> 0:06:16.440 this dad goes straight away, all the pretense goes, which 0:06:16.480 --> 0:06:17.360 is I think beautiful. 0:06:17.480 --> 0:06:22.560 It is it absolutely is It absolutely is like like 0:06:22.680 --> 0:06:25.000 we went for our walk and we had a little 0:06:25.040 --> 0:06:28.839 catch up. You know, the dads were just sharing the 0:06:28.960 --> 0:06:31.000 battles you go through and always straight into it. 0:06:31.200 --> 0:06:31.400 You know. 0:06:31.440 --> 0:06:35.400 There was no surface talk or you know, just dad's 0:06:35.440 --> 0:06:38.560 being vulnerable, being honest, just you know, sharing each other. Well, 0:06:38.600 --> 0:06:40.680 this is what I did. You know, when my son 0:06:40.760 --> 0:06:43.240 is going through their struggles and it's great to hear 0:06:43.279 --> 0:06:46.880 the encouragement as well. It gives them hope. 0:06:52.320 --> 0:06:55.520 When my son was first diagnosed, we had no idea 0:06:55.520 --> 0:06:56.640 what autism wants. 0:06:57.920 --> 0:07:01.400 That's Mac Ponneu, another dad in this group. His five 0:07:01.480 --> 0:07:03.480 year old son Matthias, is autistic. 0:07:04.520 --> 0:07:08.000 So it was a lot to deal with at the time. 0:07:09.040 --> 0:07:12.120 Like we were told that if we don't get a diagnose, 0:07:12.120 --> 0:07:14.680 we won't get any supports, Like that's the doorway to 0:07:14.800 --> 0:07:21.240 getting you know, supports around him. I said to my wife, well, 0:07:21.240 --> 0:07:26.600 what do we do now. You know, when you become 0:07:26.600 --> 0:07:29.480 a first time parent, you have all these ideas. I 0:07:29.520 --> 0:07:31.400 want to play basketball with him, I want to throw 0:07:31.440 --> 0:07:34.080 the ball with him. You make up all these plans 0:07:34.120 --> 0:07:36.880 in your head and then you get thrown in the deep. 0:07:38.840 --> 0:07:44.880 All those dreams just gone out the window. It feel 0:07:44.960 --> 0:07:49.480 like you have to start all over again. I needed 0:07:49.520 --> 0:07:52.840 a couple of weeks just to circ all that and 0:07:52.960 --> 0:07:56.400 just to take everything in. And after that two weeks, 0:07:58.080 --> 0:08:00.360 I had to step back from a lot of things 0:08:00.360 --> 0:08:02.640 I was doing for work to focus on my boy. 0:08:03.520 --> 0:08:05.840 And I knew that that will be the best way 0:08:05.880 --> 0:08:09.440 forward for us. And when we couldn't get any answers 0:08:09.560 --> 0:08:14.360 or not even a response from the ministry, and couldn't 0:08:14.360 --> 0:08:17.640 get any of those supports, we had to go and 0:08:17.680 --> 0:08:19.760 create those opportunities ourselves. 0:08:26.800 --> 0:08:30.960 It's definitely come up families sharing with me a lack 0:08:31.000 --> 0:08:33.040 of trust in the system. 0:08:33.520 --> 0:08:36.920 Willow Sainsbury is an educational psychologist. I got in touch 0:08:36.960 --> 0:08:39.280 with her after reading a research paper she'd done on 0:08:39.320 --> 0:08:43.600 the experiences of parents with autistic or ADHD kids. But 0:08:43.679 --> 0:08:46.280 she tells me this was a second study. It came 0:08:46.320 --> 0:08:47.960 about almost by accident. 0:08:49.840 --> 0:08:54.120 So I started looking at cooccurrence and my first research 0:08:54.200 --> 0:08:58.880 project was very quantitative, so very mathematical. I was looking 0:08:58.920 --> 0:09:02.199 at exactly age diagnosis and how much later it was. 0:09:02.640 --> 0:09:08.480 But at the end of that very quantitative, mathematical study, 0:09:09.280 --> 0:09:12.880 I asked three questions and I never expected to get 0:09:12.920 --> 0:09:18.640 the response that I did. And my three questions were, 0:09:18.960 --> 0:09:23.760 what was helpful about the diagnosis process, what was unhelpful 0:09:23.760 --> 0:09:27.079 about the diagnosis process? And what would you like researchers 0:09:27.080 --> 0:09:28.280 to know? 0:09:28.720 --> 0:09:29.520 Good questions? 0:09:29.960 --> 0:09:32.040 Thank you? What were the answers? 0:09:32.720 --> 0:09:37.960 Well, the answers were pages and pages of writing, and 0:09:38.000 --> 0:09:40.080 they were the last questions in my survey. And I 0:09:40.120 --> 0:09:41.720 don't know if you've ever had to do one of 0:09:41.720 --> 0:09:43.679 these surveys, but sometimes you can get really tired by 0:09:43.679 --> 0:09:45.920 the end and you just want to get it done. 0:09:46.400 --> 0:09:50.760 So I was really impressed and heartened and also humbled 0:09:50.760 --> 0:09:54.200 by how much parents had taken the time to write. 0:09:54.840 --> 0:09:58.360 And because of that, I thought, right, this has to 0:09:58.400 --> 0:10:01.600 be published as well, have to get these voices of 0:10:01.640 --> 0:10:07.079 these parents out as well. So strange enough, it was 0:10:07.120 --> 0:10:11.160 almost an incidental study. I had ethics approval to us 0:10:11.160 --> 0:10:15.920 these questions, but I wasn't necessarily expecting an entire research 0:10:16.000 --> 0:10:20.280 paper to come from these three questions. But it was 0:10:20.320 --> 0:10:25.319 because of what parents had taken the time to write. 0:10:26.160 --> 0:10:31.880 Well for starters, the question that what was helpful actually 0:10:31.960 --> 0:10:37.520 strange enough, many parents had written nothing at all. But then, 0:10:37.600 --> 0:10:44.120 of course what they said was unhelpful was heartbreaking. I 0:10:44.200 --> 0:10:46.320 must submit that I would occasionally break to go have 0:10:46.320 --> 0:10:48.440 a glass of wine and approach it the next day, 0:10:48.600 --> 0:10:52.720 because some of them did bring me to tears pages 0:10:53.160 --> 0:10:57.280 that they had written about the journeys that they had 0:10:57.320 --> 0:11:00.640 been on with their child and just the and the 0:11:00.679 --> 0:11:08.200 wait times and how heartbreaking their journeys had been, and 0:11:08.280 --> 0:11:10.920 how long the journeys had been, and also there wasn't 0:11:10.960 --> 0:11:13.240 a lot of resolution that now things were all good. 0:11:13.679 --> 0:11:18.199 Number of parents are just started with swear words as well, 0:11:18.720 --> 0:11:21.880 the system is can we surround this podcast, you can 0:11:21.920 --> 0:11:25.000 swear that the system is fucked, the system is broken, 0:11:25.240 --> 0:11:29.160 the system is shit. So and then would start to 0:11:29.200 --> 0:11:32.760 explain why I did occasionally get some of them writing 0:11:32.800 --> 0:11:35.760 their stories and there was a natural resolution and that 0:11:35.880 --> 0:11:38.320 they'd said that they're now their child is thriving, but 0:11:38.360 --> 0:11:41.720 a lot of them said, and my child continues to 0:11:41.800 --> 0:11:43.040 suffer in the system. 0:11:44.400 --> 0:11:47.560 Mac member of the Dad's Autism group, agrees that the 0:11:47.640 --> 0:11:49.360 supports just aren't there. 0:11:50.520 --> 0:11:53.200 You go to get a diagnosis and then you basically 0:11:53.280 --> 0:11:55.360 just get dumb in the system. You go out and 0:11:56.120 --> 0:11:57.720 find things out yourself. 0:11:57.920 --> 0:12:01.640 And other parents apparent resources. 0:12:01.720 --> 0:12:05.319 Exactly, you shouldn't you shouldn't feel like that you shouldn't 0:12:05.400 --> 0:12:07.960 have to rely on other parents to get more information. 0:12:08.520 --> 0:12:10.560 This is why a lot of parents fall through the 0:12:10.600 --> 0:12:14.600 cracks because the lack of support and lack of understanding, 0:12:14.679 --> 0:12:18.400 and just lack of people having the empathy and also 0:12:18.840 --> 0:12:22.520 the time to actually fully understand. So most families go 0:12:22.600 --> 0:12:25.800 through diagnosis and ins like that's all we could do 0:12:25.880 --> 0:12:28.840 for now, and then when we ask for services, you 0:12:28.920 --> 0:12:32.520 have to make more appointments, which is quite overwhelming for 0:12:32.640 --> 0:12:35.760 families just to go and do one appointment to get 0:12:35.840 --> 0:12:37.600 to the appointment, yeah, just to. 0:12:39.200 --> 0:12:42.760 Get there, and then you have such high hopes with 0:12:42.800 --> 0:12:45.600 each appointment. This is the thing, and then they just 0:12:45.679 --> 0:12:48.600 dismiss you, or they're not listening to you, or they're like, oh, 0:12:48.679 --> 0:12:49.920 let's see how it goes. 0:12:50.240 --> 0:12:52.920 We got told next time, don't bring your shopping list. 0:12:53.360 --> 0:12:56.520 My wife and I wanted to understand what is out there, 0:12:56.640 --> 0:12:59.120 what is available, what do we need to do next? 0:13:00.240 --> 0:13:04.520 Don't bring your shopping list. That's heartbreaking, but it's actually 0:13:04.600 --> 0:13:06.880 the kind of thing parents here all the time. 0:13:10.800 --> 0:13:14.400 In my study I talked about the main theme was 0:13:14.400 --> 0:13:20.000 a battle theme that you that parents repeatedly used adjectives 0:13:20.040 --> 0:13:24.280 around battle, so they would repeatedly write fighting the system. 0:13:24.840 --> 0:13:28.040 It's a constant battle. No one tells you that you 0:13:28.280 --> 0:13:31.880 daily battle all the different organizations, or. 0:13:32.240 --> 0:13:36.000 You get the diagnosis finally after waiting, waiting, waiting, you're 0:13:36.080 --> 0:13:41.280 sent out and there's no next steps and you're like, oh, oh, 0:13:41.360 --> 0:13:45.280 I thought it would be like a medical diagnosis. Now 0:13:45.280 --> 0:13:46.880 you did this and someone will call you about that. 0:13:46.880 --> 0:13:50.200 That that that that, and it's that was I think 0:13:50.280 --> 0:13:53.520 my lowest point where I went I finally got the diagnosis. 0:13:53.600 --> 0:13:56.280 Oh okay, I'm still alone. 0:13:56.720 --> 0:14:01.880 Yeah, the second battle for support again. Parents said that 0:14:02.360 --> 0:14:05.360 they thought that after the diagnosis exactly like you've just 0:14:05.400 --> 0:14:08.760 explained on it, there would be support, and there just 0:14:08.840 --> 0:14:12.600 was nothing. It was a desert of nothing. And there 0:14:12.679 --> 0:14:15.600 is some examples in our system where we've tried to 0:14:15.679 --> 0:14:18.680 put in place. So for example, I know the autism 0:14:18.720 --> 0:14:21.800 coordinators have done a great job up and down the 0:14:21.920 --> 0:14:25.760 country after a child get an autistic diagnosis trying to 0:14:26.280 --> 0:14:28.960 then give support for the FARO. But wouldn't it be 0:14:28.960 --> 0:14:32.440 great if it was across the board and communicated with 0:14:32.560 --> 0:14:35.760 the school so that that wasn't the parents hating to 0:14:35.760 --> 0:14:39.960 come in and share the messages. And also I think 0:14:40.000 --> 0:14:43.920 that parents are exhausted and then they go in and 0:14:43.920 --> 0:14:47.880 share the messages and they see in the education system 0:14:48.280 --> 0:14:51.600 a number of old fashioned ways of thinking about these diagnoses. 0:14:51.640 --> 0:14:55.240 So then you start another battle for your child's education 0:14:55.400 --> 0:14:58.440 and for what that might look like. I think as well, 0:14:58.560 --> 0:15:02.720 to be fair to teachers, teachers are also thinking about 0:15:02.720 --> 0:15:05.840 how underresourced they are and how they're going to fight 0:15:06.000 --> 0:15:09.600 for teacher ades and more support in the classroom. 0:15:09.800 --> 0:15:13.440 There are some great practitioners and educators out there that 0:15:13.840 --> 0:15:19.720 change lives, but it's sometimes it's luck who get there's 0:15:19.800 --> 0:15:23.000 no kind of meeting that far. No where they are 0:15:23.040 --> 0:15:37.320 at is so important. Most of the dads in the 0:15:37.360 --> 0:15:40.360 autism group knew early on that their kids' lives would 0:15:40.400 --> 0:15:43.720 be different from the picture they had, but often the 0:15:43.760 --> 0:15:47.760 neurodivergence is not obvious in kids until later, and loving, 0:15:48.000 --> 0:15:51.000 well meaning parents have no idea their kid is struggling, 0:15:51.840 --> 0:15:54.359 But then the fallout can be dramatic. 0:15:56.360 --> 0:16:02.720 That decline from being okay and positive to us with 0:16:03.200 --> 0:16:08.360 a child and serious crisis was probably six weeks. You know, 0:16:08.920 --> 0:16:11.520 we went from thinking a little bit of social anxiety, 0:16:11.520 --> 0:16:14.440 we're just getting adjusted to school, to we need some 0:16:14.560 --> 0:16:16.280 really serious help. 0:16:19.080 --> 0:16:22.800 Broadcaster Francisca Radkins's daughter was thirteen when a mental health 0:16:22.840 --> 0:16:26.400 crisis turned everything upside down. That was two and a 0:16:26.440 --> 0:16:29.800 half years ago, and it was the toughest, most confusing 0:16:29.880 --> 0:16:31.480 period of the family's life. 0:16:35.520 --> 0:16:37.520 Like we were so clearly sitting in the doctor's office 0:16:37.520 --> 0:16:40.320 and the doctor going, you need some help. I would 0:16:40.360 --> 0:16:43.160 go private. Public system's going to take too long to 0:16:43.160 --> 0:16:46.800 get into. Here's the name of a couple of people, 0:16:46.800 --> 0:16:50.360 but you just need to ring around. Here's some pamphlets 0:16:51.120 --> 0:16:55.800 on anxiety and depression, and hey, look, if you're really 0:16:55.800 --> 0:16:57.680 worried about your child, you need to call the police 0:16:57.760 --> 0:16:59.280 or go to the ED. And I remember something going, 0:16:59.320 --> 0:17:03.600 I'm sorry, what And I can remember walking from the 0:17:03.760 --> 0:17:08.080 from the doctor's office to the reception and going feeling numb. 0:17:08.359 --> 0:17:10.040 You know that feeling when the adrenaline hurts and you 0:17:10.080 --> 0:17:13.880 just go numb. And I was going, Okay, we've got 0:17:13.880 --> 0:17:15.479 a really big problem on my hands here. But I 0:17:15.560 --> 0:17:18.480 have no idea what to do. I have no idea 0:17:18.480 --> 0:17:21.080 where to start. I don't even know how to look 0:17:21.119 --> 0:17:25.399 after my daughter today or tomorrow. Let alone solve this. 0:17:27.080 --> 0:17:28.080 What was ahead of us. 0:17:28.160 --> 0:17:28.480 You know. 0:17:30.400 --> 0:17:32.760 When you see that you were given some pamphlets in 0:17:32.800 --> 0:17:35.480 the same conversation that you might have to ring the 0:17:35.480 --> 0:17:37.679 idea about your like pamphlets. 0:17:37.560 --> 0:17:41.199 And you don't know what's wrong. No, it's kind of 0:17:41.320 --> 0:17:45.160 and what you start learning, especially around neurodiversity, is it's 0:17:45.200 --> 0:17:49.480 not one there's not one thing. There's lots of connections 0:17:49.080 --> 0:17:52.560 and you know, and what I now know is that 0:17:52.600 --> 0:17:55.720 it was just going to be this really long process 0:17:55.760 --> 0:17:57.000 to kind of unravel it. 0:17:57.080 --> 0:18:00.720 All. 0:18:00.880 --> 0:18:05.360 The masking and coping were classic signs of undiagnosed ADHD. 0:18:06.080 --> 0:18:09.040 It's such a familiar story for so many girls and women. 0:18:09.560 --> 0:18:12.399 The masking hides this stress they're feeling, and it's a 0:18:12.400 --> 0:18:16.479 long time before neurodivergence is even considered. Francesca says they 0:18:16.480 --> 0:18:19.280 were lucky to be able to access private therapy before 0:18:19.320 --> 0:18:24.399 the diagnostic process. Eventually, ADHD was identified along with some 0:18:24.480 --> 0:18:28.800 other neurodivergent profiles, but the process wasn't quick. 0:18:30.359 --> 0:18:33.520 And so that took us a year. We were accepted 0:18:33.520 --> 0:18:36.520 into the public system in July of twenty twenty two, 0:18:36.520 --> 0:18:39.120 and we had our first appointment in February twenty twenty three. 0:18:39.160 --> 0:18:41.320 So that's how long you have to wait, and that's 0:18:41.359 --> 0:18:43.240 just heartbreaking. If we hadn't been able to get that 0:18:43.359 --> 0:18:48.320 private help before that, I don't know what would have happened. 0:18:48.359 --> 0:18:50.040 To be honest with you, I don't know where we'd be. 0:18:54.160 --> 0:18:57.359 We realized that our daughter had probably been struggling for 0:18:57.440 --> 0:19:00.320 a lot longer than we'd realized, but she had just 0:19:00.400 --> 0:19:05.680 been keeping on going. All of a sudden, all that coping, 0:19:06.320 --> 0:19:09.520 all that masking she had been doing her entire life 0:19:10.480 --> 0:19:11.840 no longer worked. 0:19:11.880 --> 0:19:14.520 When you sent me through. You sent me through a 0:19:14.520 --> 0:19:17.879 really comprehensive background on your daughter. WOTS was wonderful and 0:19:17.920 --> 0:19:23.720 I was actually in tears reading it, and it just 0:19:23.760 --> 0:19:28.560 reminded me a lot of my situation. The Tira, the 0:19:28.680 --> 0:19:35.600 absolute Terrra just that really steep kind of declined, but 0:19:35.680 --> 0:19:37.920 you know, it just happened so fast, and you're like 0:19:38.000 --> 0:19:39.400 they're going to fall off the end of the world. 0:19:41.080 --> 0:19:41.840 Tell me how that. 0:19:41.840 --> 0:19:44.800 Was for you that period. 0:19:51.560 --> 0:19:53.560 I felt like I was floating. I felt like I 0:19:53.600 --> 0:19:55.639 was on a cliff and I was sort of stepped 0:19:55.640 --> 0:19:58.080 out and I was just hovering. I was just hovering 0:19:58.119 --> 0:20:02.679 in the air, going okay, okay, I'm gonna or like 0:20:03.040 --> 0:20:06.000 a swan. You know, that's just sort of gracefully, you know, 0:20:06.160 --> 0:20:09.720 moving across the lake. But underneath my feet we're just paddling. 0:20:11.800 --> 0:20:14.879 I think you're in fight and flight mode twenty four seven, 0:20:16.560 --> 0:20:23.400 probably for almost two years. It's not It's not good 0:20:23.440 --> 0:20:29.720 for anyone. About a year in I was just exhausted. 0:20:30.640 --> 0:20:34.720 By that stage. Things were pretty bad at their worst, probably, 0:20:36.440 --> 0:20:41.399 and my daughter could not leave at the house, couldn't 0:20:41.400 --> 0:20:43.560 even stand in the window of our house for fear 0:20:43.600 --> 0:20:44.200 of being seen. 0:20:49.800 --> 0:20:52.919 Francisca says that, without a doubt, this was the worst 0:20:53.040 --> 0:20:55.879 period of her life. I've talked to so many mums 0:20:55.920 --> 0:20:59.080 about this, the sense that you've somehow failed as a parent, 0:20:59.480 --> 0:21:01.840 that no matter what you do, how hard you work, 0:21:01.960 --> 0:21:05.199 all the research, all the love you give, it's just 0:21:05.480 --> 0:21:09.200 not enough. I ask Peter Parsons if it's the same 0:21:09.200 --> 0:21:13.000 for the fathers in his group. Do you feel like 0:21:13.080 --> 0:21:17.080 the dads feel like they're failing because it's their job 0:21:17.200 --> 0:21:18.399 to look after their family? 0:21:19.280 --> 0:21:21.960 Definitely, because. 0:21:24.680 --> 0:21:28.399 Sorry, you take your time. 0:21:36.000 --> 0:21:42.119 He's a dad, like it's your role, Like it's ingrained 0:21:42.119 --> 0:21:49.560 in you to be a provider and a protector for 0:21:49.640 --> 0:21:57.239 your family. And when your boy is non verbal and 0:21:57.280 --> 0:22:01.840 he can't tell you what's wrong, you can't help but 0:22:01.880 --> 0:22:05.880 feel like a failure sometimes because you can't give them 0:22:05.880 --> 0:22:06.480 what they need. 0:22:11.560 --> 0:22:16.959 In the group, do the guys feel able to share 0:22:17.760 --> 0:22:24.560 that sort of thing, because that's it. Yeah, they'll all 0:22:24.600 --> 0:22:25.440 feel it, won't they. 0:22:25.520 --> 0:22:28.560 Yeah, yeah, yeah, Like in the back of your mind, 0:22:29.600 --> 0:22:34.920 you're always worried about the future, you know, because who's 0:22:34.920 --> 0:22:37.960 going to look after your child when you're gone? And 0:22:38.040 --> 0:22:40.720 that's always and the dads have all shared that, every 0:22:40.720 --> 0:22:44.399 single one of them. That's always a worry in the 0:22:44.400 --> 0:22:45.520 back of their mind. 0:22:52.440 --> 0:22:55.199 Tell me you said Jordan's got a heart of gold. 0:22:55.480 --> 0:22:58.639 Tell me their beautiful, wonderful things about Jordan. 0:23:01.000 --> 0:23:02.000 You can be tearing up again. 0:23:02.080 --> 0:23:10.760 Gosh, he's he's the definition of a of a gentle giant. 0:23:11.040 --> 0:23:12.160 Like he's very. 0:23:12.000 --> 0:23:15.120 Tall for his age, but that could will not hurt 0:23:15.119 --> 0:23:25.119 a fly. He's very laid back, he's very you know, 0:23:25.240 --> 0:23:27.159 his teachers love him because he's just so easy to 0:23:27.200 --> 0:23:27.640 look after. 0:23:29.840 --> 0:23:31.640 What gives him joy? What what does he. 0:23:31.680 --> 0:23:33.040 Love to do? 0:23:33.600 --> 0:23:37.920 He so he loves So he's eleven, but he's still 0:23:38.040 --> 0:23:43.240 into like Frozen, like Minions and all that sort of stuff. 0:23:43.400 --> 0:23:45.000 And he loves to go to the movies. That's his 0:23:45.040 --> 0:23:48.000 favorite thing. Really, Yea, he loves to go to the movies. 0:23:48.080 --> 0:23:51.080 So we've seen like that Despicable Me movie, that's come 0:23:51.119 --> 0:23:52.959 out like at least ten times. 0:23:53.240 --> 0:23:53.960 But it's his. 0:23:53.960 --> 0:23:56.320 Thing, you know, So he is not good enough to 0:23:56.359 --> 0:23:57.600 sit here and watch Eddie wants to go to the 0:23:57.600 --> 0:23:57.879 movie there. 0:23:57.920 --> 0:23:58.840 Yeah, it's going to be in the movies. 0:23:58.880 --> 0:24:01.840 So he'll grab my phone, find the Holts app and 0:24:01.880 --> 0:24:03.320 then open it up in your point to the movie 0:24:03.320 --> 0:24:05.640 and I'm like, okay, we're going to the movies again, 0:24:06.040 --> 0:24:06.320 you know. 0:24:06.400 --> 0:24:08.800 So that gives us hope. 0:24:15.320 --> 0:24:19.360 What would you like society to know too? 0:24:20.080 --> 0:24:20.359 What? 0:24:20.359 --> 0:24:21.320 What would help. 0:24:22.680 --> 0:24:29.600 Hm? It's it's a tough one because at the end 0:24:29.640 --> 0:24:33.399 of the day, when you're non verbal, like you can't 0:24:33.440 --> 0:24:37.280 tell people what you want and what you need going forward. 0:24:37.440 --> 0:24:38.560 Well, even who you are. 0:24:39.000 --> 0:24:41.240 Yeah, it's exactly, that's exactly it. 0:24:41.280 --> 0:24:45.040 There's almost no space to go. Let's find his thing. 0:24:45.280 --> 0:24:48.000 It's a very good point, like saying, like you just 0:24:48.040 --> 0:24:50.159 get caught up, you know, that's the day to day 0:24:50.240 --> 0:24:53.240