EP 65: PDA (Pathological Demand Avoidance) Parenting with Tina MacGillivray

Episode 65

This week we are joined by Tina MacGillivray, known as @thepdaparent on instagram and a beacon of resilience and knowledge in parenting. This week we talk to her about the journey of parenting her son with 48 XXYY syndrome, autism, Tourette's, and PDA.

This is a heartbreaking yet inspiring episode which tells the story of a parent who has realised that the support she needs just isn't there, and has taken matters into her own hand - an experience help with so many others in this community. We talk PDA (Pathological Demand Avoidance), about being on the receiving end of an underfunded system, and the choice to disengage. We also discuss how Tina brought herself and her son back from the brink, low demand parenting, educating oneself about the nervous system, and the key role humour has in parenting.

The episode concludes with an empowering message to parents: your journey, though daunting, is laced with opportunities for transformation, growth, and the discovery of unexpected joy in the face of adversity. Join us as we share a story not just of struggle, but of profound hope and the indelible strength of the human spirit.

Click here for Tina's  The PDA Parent Newsletter 
PDA Books:

Understanding PDA in Children – Phil Christie

The Educators Guide to PDA – Laura Kerbey

 Collaborative Approaches to Learning for Children with PDA – Ruth Fidler 

www.sendparenting.com

Transcript

Dr Olivia Kessel: 0:06

Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade. In this episode I will be speaking with Tina McGillivray, who will share with us her journey with her son, who has 48 XXY syndrome, with autism, pda, which is pathological demand avoidance, tourette's, and ADHD, which is attention deficit, hyperfair activity disorder, and how she steered her family from a point of complete breakdown to a much better place. This is an absolute must listen. Tina's honesty and openness and desire for other parents to know that they're not alone shines out. So welcome, tina. It is such a pleasure to have you on the Send Parenting podcast.

Tina Mcgillivray: 1:27

Thank, you for coming First.

Dr Olivia Kessel: 1:29

Oh, you are so welcome. First I have to thank you for being not only a listener of the podcast, but so supportive and sharing the message with other parents, with your community that you've built up. I really appreciate it. So, thank you, because the more people that your podcast made me cry.

Tina Mcgillivray: 1:48

This made me actually have to stop while I was walking the dogs because I've had such big emotions and actually gone. Oh my God, there is other people going through this. Why is this not being talked about more Honestly? Every single one of your podcasts I've learned something from, I've resonated with and I've felt oh my gosh, yes, there is other people going through what I'm going through and that is why I sit at my page. So have you doing it on a different form is just amazing.

Dr Olivia Kessel: 2:18

I think we really compliment each other because we have the same kind of shared passion and vision and had the same feelings, which a lot of moms out there do, of being so alone and wanting to help others to not feel that way. I do it through podcasting, you do it through it's called the PDA Parent on Instagram, which stands for Pathological Demand Avoidance, and then you've got a newsletter too, which I've signed up for. So it's just wonderful to meet a kindred soul and spirit like yourself, and I'm really happy that you're going to share your story and your journey on the podcast today. I guess that's actually a really great place to start. Is the journey with your son and he has fragile 48XXYY syndrome, is that?

Tina Mcgillivray: 3:01

correct. He has a rare chromosome syndrome called 48XXYY. So he was diagnosed at age one when he wasn't meeting his milestones. He didn't walk till he was three. He had low speech. He was the most placid baby. He actually, when I look him back I thought he was just a boy and I thought he was just slow. But he was actually just sitting there, quite vacant. His muscle tone was really low and I went, he went into nursery.

Tina Mcgillivray: 3:29

When I went back to work, so he was about nine months and they pulled me aside and said and you know, we don't, we think that and this is maybe not me, you know, wagging behind in some of his skills and I was raging. I was raging, how dare you? He's just a boy and I'd had an older daughter. So I just thought it was because he was a boy and but we went to pediatrician and, interestingly, the pediatrician the first thing he did was look at his palm and he said he's got a singular palm crease. So a lot of children with Down syndrome or a chromosome syndrome have a singular palm crease. So I'm not a palm reader. But he took some bloods and fast for three weeks. I was sitting in the room when he said to your son has 48 xxy, which means he has double chromosomes in every cell of his body. I never worked with it before, I've never met anybody with it. Here's a leaflet. We went home and went but and this was so still so plastic, you could take him anywhere and I thought this is no bother.

Tina Mcgillivray: 4:38

And it wasn't until he went into school that we started. He started to struggle more and xxy is kind of an umbrella diagnosis. So underneath the xxy you have a lot of autism, adhd, tourette's, and I knew that Innis was autistic and I went into the school. Oh, no, no, no, no, no. And I actually asked for a referral to CAMHS because at that point we were struggling with quite challenging behavior. But he was still quite little, he was maybe about seven or eight. And CAMHS, really.

Tina Mcgillivray: 5:22

I went to the first meeting we went with CAMHS. Innis wouldn't come into the room. He said I don't like the gray floor, the lady's sitting on a blue chair, I don't like the lady, you wouldn't come into the room. So I then had four really weird CAMHS things where she was kind of teaching me how to parent. I was going along because I really wanted to tickle these boxes and I was determined to get in this autism diagnosis and she wrote a really, really report. And you know what, when it came in, I actually burst out crying because it was full of parental blame. Mum is anxious, mum is spending too much time on the internet and this had gone out to all the professionals that worked with Innis and it really, really hurt me. I felt such shame and she'd written in it quite a few times that we do not advise Innis to have an autism assessment. So I can't be too.

Dr Olivia Kessel: 6:17

I mean, she's the same kind of choice To have that blame put. It's just oh, my heart goes out to you, you know yeah.

Tina Mcgillivray: 6:26

And we always think as well. It's like, why do they think parents come into these rooms? We don't come into these rooms wanting to be difficult or wanting our kids to be challenging, or saying we're having these struggles, we're not making it up just for the gig, old you know. So we just went back and then it was the headmistress at Innis's local primary. It was her last year. She'd been in the school for 40 years, this woman. She'd received awards, she had so much power and so much authority and people respected her. And on her last, like six months, she said Tina, what do you need from me? And I said, listen, I really need you to get in this sort of diagnosed with autism. And she said, yeah, no, bother. And she just said I felt like she was the only person in my world that I've ever met that said I'm going to sit beside you. What do you need? And as soon as she walked into the room, everybody paid attention because she was had this you know authority behind her and I didn't as his mum.

Tina Mcgillivray: 7:27

So he was diagnosed with autism, then he was diagnosed with ADHD and then he was diagnosed with Tourette's. So then we kind of move forward a wee bit and I've always spoken about this and I think I chatted with you about it Age nine. I don't know what happens at age nine, but the messages that I get and the emails I get mention age nine all the time. I don't know if it's something to do with there's a gap between them, the child, and their peers. The peers start to go that way and, you know, the gap widens and I also think that's the age that children get a wee bit more independent. So their social skills, the. You know, when he was five there wasn't much difference between him and his peers, but by nine it had, and I don't know if that's something to do with it or hormones, but age nine is definitely something that I would like to learn more about?

Dr Olivia Kessel: 8:24

Yeah, and you know, as I mentioned it, there is actually a clinical reason and actually, with brain imaging studies, and when you see the children's brain of a of a neurodiverse child versus a neurotypical child, there's about a 30% lag. And so you have figured it out, tina, exactly at that point where it becomes more evident when other children's brains are maturing. I mean, even their gray matter is different, their myelination is different, and they're 30%. They're 30% lagging behind. And so you see your friends, children's, you know, getting ready for school, packing their lunches, doing all this stuff, and your child is not there because actually, that nine year old is more like a six year old. And if you look at your nine year olds and six year olds say, well, that's actually normal, you know.

Dr Olivia Kessel: 9:06

So there is actually a reason why, from how their brains develop, that they are delayed, and I think it's a really important point and for me as a parent as well, learning that was like I could take a deep breath and go okay. So that's why you know, and then to start looking at them instead of judging them and I and you do judge unsoundly as a parent why can't they do that? Are they just being difficult? Do they just want to piss me off, you know, but no, it's actually because they physically, physiologically cannot. They're not with their peers. So if education and parents need to shift around that concept as well, because you can't have the same, you wouldn't have the same expectations on a six year old as you would have. So I think there's a great point to bring up. And, yeah, my daughter was also eight, going on nine.

Tina Mcgillivray: 9:53

So eight going on, nine, he started to really struggle and and he was in mainstream primary and his peers were really good with him and we did, we did manage to kind of bump through through primary. Now, knowing what I know, I think that his peers were more able to co-regulate him and adapt their behavior because they were mainstream peers. So I think that helped a lot. He was in a really small school so I mean there was bumps, but it was when we moved into the SEN high school that the wheels came off the bus and I think that was. I was so excited, like the SEN unit was amazing. I went in and they did so much and I thought he's going to love it here. He's going to love it here, this is brilliant.

Tina Mcgillivray: 10:47

But he didn't, he didn't, he didn't, he didn't move as smoothly and that's when they we stopped. He stopped being able to go to school and the first year he kind of went part time. The second year was horrendous. That was the really really hard year and that was the year that I learned about PDA and realized why we weren't fitting into, fitting into to everything else. So it was. It must have been second year, so he was 13 when I realized he had the PDA profile and it was the weirdest thing because I was actually walking Like I didn't think I was going to have a life changing moment in my wellies, but I was in my wellies and it was absolutely torrential rain and I heard two ladies talking about pathological and demand avoidance or a persuasive drive for autonomy, and I was like, oh my gosh, this is it.

Tina Mcgillivray: 11:49

Because in the SEN unit it was set up, his other peers were all typical autism, so they loved a routine, they loved a structure, they loved the visual timetables, they loved the hierarchy of school and they were thriving. And that really hurt because I'm like, but my boy's autistic, why is he not thriving? And when I spoke to the other moms they were like, oh yeah, they love it, they're happy. You know, I'm so happy. And I was like, is there something wrong with me? Is there something wrong with me? Why is my boy not coping in this environment? So I, when I heard about PDA, I went on a deep dive in research of the things that I thought that matched in us with the PDA profile, one that he hates visual timetables, he hates stickers, he hates rewards because they are a demand on his vulnerable nervous system.

Tina Mcgillivray: 12:46

The other thing that was in us always had quite a good imagination. Like typically autistic people don't have a vivid imagination, whereas in us did, and often his special interests were on people. So that could be. He was really obsessed with Gordon Ramsay for a little while. He likes big people that break the rules and it's love-breaking rules, which is not typical autism.

Tina Mcgillivray: 13:13

And he also used to get quite obsessed with maybe a peer in his school, but he would become so obsessive that he would sabotage the friendship because although he had, sometimes you think kids with PDA have have better social skills than a typical autistic person, but it's all really surface level.

Tina Mcgillivray: 13:34

So he would become obsessed with one of his peers or somebody and he would he would sabotage the friendship. So that that was things that resonated with the PDA for me and he also. He actually really liked trying new, exciting things and even if he met someone, like if you got a new teacher, that would really excite in us. He would get that dopamine spike and it would go really well for like a week and then it would just go boom and I never. I could never understand why, because typically autistic people when they get a new teacher, they'll do a social story and a visual board and we'll have lots of introducing and stuff like that, whereas in us he, he, he, he thrived with new people and new experiences, but then it just became a demand, and that's when we would get the challenge and behavior.

Dr Olivia Kessel: 14:29

So almost his environment was set up for a disaster. Actually, it was the antithesis of what's worked for him that was working for the other parents. So did you see a slow deterioration then, or a fast deterioration, of how he was coping at school and then back at home?

Tina Mcgillivray: 14:43

His first teacher was quite a panicky woman and I like one time he ran and she was going oh my God, oh my God, and I'm like you're a panicky, why are you panicking? So that that was. That was challenging. But he got to the point that, like, getting in this up in the morning is a demand, me going into his bedroom and saying we need, I need you to get up and you need to go to school, and this is all lots and lots of demands which activate his system.

Tina Mcgillivray: 15:13

I always think of it like a jar of marbles. So in a stash today and he's got no marbles in his jar, whereas if I'm getting him to brush his teeth, get dressed, get in the car, get your school bag, I'm filling up his jar. So what happens is his jar just gets full and goes, and that's when he has a meltdown. So I Always think of it like he has. We're always gonna activate him. You can't get by with not activating. But it's how Can we activate him less? Do you know, can I brush his teeth, can I get in dress? Which is taking a marble out the jar, out the jar? So really all I do all day to spend time putting Marbles in the jar.

Tina Mcgillivray: 15:58

I'm hoping I don't get to that point, that triggers, because I think what happens and I've seen it a lot within us, like the last day he went out with his peers, I Said to them please let Dennis get on the bus and choose where he wants to sit, because that gives him Equality and autonomy, which is really important in PDA. But they were like, oh, we can't, because he's quite high risk. He has to sit beside us one-to-one and we have to. You know, we'll put them in and we'll sit beside the one-to-one. And I said it's just not gonna work. But at the time I was like, right, okay. And I said if Innes gets wet when you're out on your walk, you know, if he gets muddy, don't get him changed, just leave him. He's only gonna be on the bus like 10 minutes, just leave him. But they didn't and they got them changed and there was a massive meltdown. But what I felt what happens is they just look at the last behavior rather than looking at all these marbles have gone into the jar. I always think they look for the last marble. What was the last thing that happened? Oh, we asked him to get on the bus. That must be the problem here, you know, and it's just trying to explain to people that it's. It's all the activations. You know, we have to look at everything that's just triggered his disabled nervous system Again and again, like switch, like switch, like switch, like it's still the lightest, was boom, and that's when we have had the challenge and behavior and within us. But it did hurt a lot when the other Typical, his peers with autism, will have work open so well within within the environment.

Tina Mcgillivray: 17:30

But it got to the stage that I was taking him to school, so I would get him into the car and he would sit I mean, he's six foot at this point, he's six hunched up and he'd have his hood down. It was None of us could speak in the car. I couldn't speak, a sibling couldn't speak, we couldn't have the Radio on. It was like I held my breath. Taking him to school, it was so stressful. And then I would get him Into the school.

Tina Mcgillivray: 17:55

At this time it was only part time and he was going into a sensory room and just lying on his own in the dark. They couldn't get him to engage and you know the school staff tried the hardest. They really did try the hardest, you know, but they didn't have the understanding of PD and they didn't have the training of PD. And if they did manage to get him out of the sensory room, he was having really Challenge and behaviors and he was throwing computers, he was being aggressive with peers, with staff.

Tina Mcgillivray: 18:25

He tried to get through the ceiling tiles and it was, and then I would just get a phone call and have to pick him up and he would have had to be restrained in a camps hold. So I was going to pick him up and it was weird because they'd have adults on the door. It must be part of the protocol. So it was like there'd be adults on the door and then I would go in and he'd be curled up in a ball in the room with Adults around him. And just one day he stood up and he's like Sheep white and I got into the car and he's like mom. I'm a big boy but I nearly cried and I'm not safe. You have to keep me safe. And that was the last day that in this attended the education system.

Dr Olivia Kessel: 19:04

Oh my god, that just must have broken your heart as a mother to hear your son say those words.

Tina Mcgillivray: 19:08

Yeah, and I'd been a cat log. He'd been getting restrained in camps, holds for like quite a few months. They've got a thing called a pairs 100 form, which I don't know if that's just Scottish, but it's when there's been really high risk behavior and he was getting like 15 In a month and he was only in the school for three hours but the school were trying their best to give me some respite. You know, yeah, to the point that I was like this isn't worth it, because Him going in and lying in the sense of him for three hours, he was coming home and he was so challenging because he he was so activated, you know.

Dr Olivia Kessel: 19:46

Yeah, so almost it was worse. But him going and coming back and getting there, how, how was he at, how was he at home and how's that journey being?

Tina Mcgillivray: 19:57

Yeah, when I first registered, it was the most scariest thing that I've probably ever did. I felt like I was taking this massive leap off a cliff and I didn't know where, which way, I was gonna fall, you know, yeah, and I was like how am I gonna cope with them 24 7 at home? And I was worried about money because, like you know, you can't financially work, and I felt shame that we hadn't managed to survive in the education system. I felt I kind of felt blamed by everybody else around me, like quite as an as an upload skill, and I felt fear about the future and I had to process all those emotions. And I also spent a lot of time on Instagram going all look at everybody else, they're doing great homeschooling, they've got glitter in their clothes, we've not even left the room, and you know. But, yeah, and I was also angry. I was angry at the education system that they couldn't they couldn't Manage my boy. I do feel at the end, though, it became a bit of a cycle because, like the inclusion team, so this ENCO team were saying to the school Well, you've got everything you need. You know, you're an SEM unit, he's got a robust EHCP. At one point he had three to one.

Tina Mcgillivray: 21:08

And then in the school we're having these challenging behaviors and saying what will we do? And when I was going to the school and saying this is this is really traumatic like, and they were saying but we need a paper trail, we need a paper trail. And I was like, so really, we need a paper, we need to prove that he's failing. You know, we need to prove that this environment isn't working. And that's really traumatic for the school staff, for me, for my son, to prove to somebody in an office that this boy isn't you know, we need a paper trail.

Tina Mcgillivray: 21:40

It was like let's see how much further he can fail before. But I, in the other hand, as a mother, I was so scared that something was going to happen that we couldn't come back from. Yeah, that's really hard to say it loud, but I was really worried that there was going to be an incident where he hurt someone or he hurt himself or he ran out into the community and I just thought like Everything can just change on a dime, and it was so challenging and high risk. I thought something like that would happen. And then I thought what will happen?

Dr Olivia Kessel: 22:13

Yeah, I mean, if just with my safeguarding hat on listening to that we have to create a paper trail, trail, you know, like no. You have to keep the child safe and, as you say, the people around the child safe. And and when you're six foot tall and you're being Triggered continually, yeah, it's a ticking time bomb. I can understand your fear.

Tina Mcgillivray: 22:30

And then at one, point I did go in and I said at the AHCP meetings I can't do this anymore. I need you to send and this to a residential school, because we live in such a rural place we only have one SEN unit. I said I can't keep him safe, I can't keep my family safe and I can't keep me, I can't do this. And it was minuted and nobody would. Nobody would take that from me, nobody would take that from me. And I knew other children in the in the area when a way a residential school. At that point I couldn't cope and I just got dismissed and I got minimised. And At one point they, like social worker education, started bickering over the table about who's who's responsibility. It was to look into residential and I was like I'm playing piggy in the middle here. This is just. This is just Just not on Um. So that has been a major part of why I started the page Um.

Tina Mcgillivray: 23:26

I know there's a lot of professionals and specialists doing their utmost in a really broken system, but it's really vulnerable families that have been left in dangerous situations and also Vulnerable families who are on their knees and reaching out for help. And when they reach out for help they're just. I remember one. It must have been the Queen's birthday or the Queen's jubilee, but the school was shut for that long weekend and and it's had a horrendous meltdown. He'd been restrained. I picked him up from school and the head of the SAN unit said listen, I've phoned the head of social work, I've spoken to him personally, I'm going to get him to do a welfare check because I'm quite worried about the safety of your family and, um, so they'll be in touch and they'll do a welfare check.

Tina Mcgillivray: 24:11

And you know, I got home that day and and this is just upstairs he was causing havoc and I was so burnt out I remember just staring at the wall. I was just staring at the wall, I couldn't move, I couldn't do anything else. I just hit total burnout and, um, I remember the school tried for me to see if I was all right and I just was like it was just horrendous. But we went into that weekend. I thought all about the social work's gonna phone and see that we're okay and I'll. And you know they never phoned. And that they never phoned and I thought, do you know, like the headmistress from the SCN schools, like I don't phone them very often, you know she said that was a major concern, and that's when I thought I feel quite scared. Now I feel quite scared because I've been vulnerable and there's nobody's coming.

Dr Olivia Kessel: 25:03

Do you know listening? Yeah, no one's listening.

Tina Mcgillivray: 25:05

Nobody's coming to save us. Do you know? That's kind of what I thought and that just continued with social work. I felt I felt dismissed, I felt ignored. I mean, they've got a duty of care to us and Legislations, but they were breaking the law. You know, you know what is they have a care of duty for a disabled child and they were. They weren't doing that, you know, and I know it's because they're under the broken system. But I did feel very. It made me feel really scared actually, because where do you, where do you turn to?

Dr Olivia Kessel: 25:43

you know, yeah.

Tina Mcgillivray: 25:46

And then the last day she peed in the pee meeting on the Friday. But so it was on the Tuesday and this is the last, the last one I ever went to, and the social work sent a message on Quite late on the Friday and I went hey guys, we're just gonna have to cancel in this is the she pee meeting because Unforeseen circumstances, and I was like, oh, I was so like, oh, I was so stressed and I was so burnt out and it just kept going round and round. And just the way they used hey guys and the email, it really triggered me. This just might not mean anything to you, but you know it was. But that was the day the last. See, she, she peed in the satin. I looked around the table. I thought nobody's come to save us. Not one person around this table can help my family. And that's when I decided it was up to me.

Dr Olivia Kessel: 26:35

Yeah, and that's a, that's a big responsibility. And to and to step away from that too, because you, that you stepped away from you just said that's enough, I've had enough. You know you step, which is, is a very brave thing to do, but especially when you're jumping into you, you know.

Tina Mcgillivray: 26:51

They are known, but I couldn't be.

Tina Mcgillivray: 26:52

Do you know, when I was jumping into the unknown, it was like this can't get any worse than it already is. And that's what I kept thinking, and I See a lot of. I was like in a system Nearly 14, and so I've been in the. I've been in there, we know, getting my ass kicked for 14 years, you know. And I had got to the point and I've been through. I'd got my MSP, I'd written to all the heads of services, I had a lawyer at one point I wasn't caring for my son because I was spending all day trying to fight for his rights. And then I thought I can't do this anymore. Something's got to give, something's got to give and it had to. It had to be the right, the fight had to go.

Tina Mcgillivray: 27:34

I was making myself very mentally I'm well, and I did say that at the last meeting. I said I'm really sorry, but you are all meeting me. Really mentally I'm well, and when I'm mentally I'm well, I can't care for my son, yeah, and so that was the last. And now, then I just went on a deep dive. I like all about in pathological demand, avoidance I learned all about in your nervous system. I'm 47.

Tina Mcgillivray: 27:59

I never knew I had the nervous system like why are they not teaching this in school? Like that would save me so much much trauma in my whole life. And also Like if they were teaching young children about their nervous system and your reception and how the body reacts to different states. Imagine how powerful that would be for the next generation's mental health Absolutely To know to not feel fear and shame when they have these big behaviors, because it's okay. We're human and this is totally natural part of our survival instinct, you know. So that was like a lightbulb and I really just dived into low-demand parenting and I became a Mentor for my son rather than his parent, because the cultural, traditional parenting didn't work for my son. Consequences, rewards this is it. Just it just activated his vulnerable, disabled ever system.

Dr Olivia Kessel: 29:01

Yeah, and it's, it's um, it's kind of like a Ripping up or, you know, learning a different way to parent, because it's it's not the way we think of parenting, where you know you, I'm right, you must follow what I tell you to do and you must be obedient, otherwise you know you're gonna get punished or I'll reward you. It doesn't work. I don't think it works of nervous children at all. Well, you know from all the mothers that I've spoken to.

Tina Mcgillivray: 29:22

Do you know, even when you're a diverse children like I've altered my parents or my other children and I'm not good point and it's just made our house so much calmer.

Tina Mcgillivray: 29:34

Yeah, I'm not wondering about saying you, you must listen to me. I am the adult. I don't know what I'm doing. Do you know? As long as everybody's safe and happy, do you know what? I don't care about Anything apart from having my children growing up liking themselves. Yeah, and this is case in a world that was telling them that he wasn't great. You know, I just want him to like himself, I want him to have gluttony and self-esteem and I want to have good well-being and good mental health. That is the most important things. Loads of people ask me oh, what are you doing about in? This is education. What are you doing? I'm like right now I'm just concentrating on self-esteem, mental health and mental well-being. You know, and I'm just following what he he likes to do. That boy is an absolute whiz on the PC Like he could put me to shame and his reading and writing isn't great, but he now has all the apps and technology that he can do anything?

Dr Olivia Kessel: 30:32

Yeah, it's. I mean, really, how well does school prepare you for life? You know, knowing when the battle of Hastings was and things like that there's. You know these children get so interested in things and learn things that are of interest to them and that's makes a huge difference. But I think it's that, that, that that fear as a parent, and probably from your lip. You know the people that you interact with on Instagram. It's stepping away from education, you know. But in your case, you were kind of on a burning platform where you had to step away, for you know you had to. It wasn't working.

Tina Mcgillivray: 31:03

What people say to me like I worry how I'll cope at home, but at that point I was like it can't get any worse. Yeah, so how?

Dr Olivia Kessel: 31:11

has it. How has it been? Because it's been a year now, hasn't it that you've been?

Tina Mcgillivray: 31:16

Yeah, the last day of his school was the last day of Easter holidays and the April holidays and I have been through our role of poster of emotions, to be fair, and but we have a great relationship now. He doesn't leave the house that often. He doesn't need to leave the house, just society tells him he has to leave the house. He's quite happy and in his world and we have, and that's not going to be forever. But right now we're in a healing stage and he he came my younger daughter was having a bit of a tantrum about a horse riding helmet and he actually came out his room the other day and he's this big six-foot giant and he went Don't talk to mum like that, she doesn't deserve that. And he just gave me and gave me this big bear hug and they like he's. So we own him. I was here and he's like and I love you, mom, and he does that. He shouts out his room. I love you, mom.

Tina Mcgillivray: 32:15

And this is the boy that was so, so challenging and violent and aggressive. And when people say to me, how did you get him back? I Just started scribbling outside the lines of everything that I've ever been taught about parenting and and leaning into nervous system, nervous system regulation, co-regulation, and Not sweating the small stuff. I kind of flow down Like I go into his room and he'll call me a name and like I Don't know big old witch and he's just looking to level up Am I safe? Am I safe when I go? I'm fine, but head, you know I laugh, but it's a year ago. I'd be like, don't you dare call me that, dare you call me that? I'm good to take your PlayStation 4 off you for a whole week? And you know he's turning into a gentle, loving man and it's because he feels safe. And I just want him to feel safe because at home before, when he was going into the school, he was coming home and he was so disregulated that the behaviors at home were really I didn't feel safe among house quite a few times.

Tina Mcgillivray: 33:30

He ran away once and he tried to jump off the cliff at the back of the house and was sitting his head with stones and it was really scary time being in the house. I didn't feel safe and he was having really dark thoughts and he was so Disregulated in his nervous system that he was actually disassociating. And so he wasn't. He was losing touch with reality and which was really, really frightening. So when I think back to that boy Just over a year ago, I just can't believe the change in him and it's been through learning about Pathological demand, avoidance and and that has a nervous system, disability and needing a total different way of and parent and just being in society to say all norms and Everything are just never gonna. Never gonna work for us.

Dr Olivia Kessel: 34:23

Yeah, what I mean? I'm almost speechless because what a journey to go on. And you know, well done you as a mum to just. You know you are a fighter. I know you've told me that you're not a fighter, but I think you are a fighter and you still are a fighter and you're fighting for what's so important, which is your son's mental health and well-being and your daughters, and you're finding a way that works and Look flourishing, you know, and your family's flourishing now too, as well Not always, because I know that that's.

Tina Mcgillivray: 34:55

I don't feel scared. In my own house, which are dead for a long time, I've not felt scared and to be fair, I was saying that the other day. I don't think Enes has had like one of those huge meltdowns when I've been really scared for the people in the house, him and myself. It must be about six months. I mean, sometimes he gets dysregulated but I know I I know he's getting dysregulated and I know he's getting activated some like right marbles we're the marbles.

Tina Mcgillivray: 35:27

But what's happening? But the because, when it was, when it was really dark, that that, going back to that, I I had reached out again to my GP and I said I'm not coping. Like I actually said to her. She said are you having thoughts like suicidal thoughts? And I said I have actually thought about driving into a tree quite a few times when I'm driving. I have this. I could just drive into a tree and I said do you know what, though? I would have to have Enes with me, because if I'm going I have to take Enes with me. You know, that's that's how much I was. I was in trauma and they were like well, what we'll do is we'll give you a recall.

Dr Olivia Kessel: 36:07

You are kidding me. It was just. You've been so let down by every single.

Tina Mcgillivray: 36:16

Reach out. If you don't feel okay, please reach out.

Dr Olivia Kessel: 36:19

And when you reach out and say I'm not, okay, obviously, and I'm gonna drive me and my son into a tree. I'll call you back next.

Tina Mcgillivray: 36:25

I'm like I think you just need some respite. And I was like Because, because we'd waited, we waited on and this got respite, overnight respite. Then, when he was nine, we got allocated it was ten nights a year and to this day, at 14, is still never had a night. He's still never had a night, and they've actually just shut the respite center now, so it doesn't even exist.

Dr Olivia Kessel: 36:53

I Did you get yourself? I mean, that's a pretty dark place to be and you know how did you? How did you keep going With no help? I mean, did anyone support you or did you just?

Tina Mcgillivray: 37:08

Realization that nobody else was coming to help me. I think I've been looking about for somebody to come in and save the day and. I think I realized that nobody else was gonna, that wasn't gonna save us, and Learning about PD and the nervous system honestly, like that, just changed my whole mental health.

Dr Olivia Kessel: 37:24

You know that's why we're giving back some, some, some. It's funnily enough, I just use the word control because it is actually giving up control, but it gave you a way forward, like this is why this is happening.

Tina Mcgillivray: 37:38

This is why this is happening. You know, and I also, I used to get so frustrated because the people who are in jobs, who are meant to help me, weren't helping me, and that would make me really angry and frustrated. And I get on the email and I and I'd be on the phone, I'd be chasing people. And then Spanish, when I kind of said, right, I'm putting these boundaries up, I don't want anybody to tell me just now, it was great, I was like oh, now I've got time to just heal and heal through the trauma and heal through the burnout and Because there's trauma to you, there's trauma to your son, there's trauma to the family.

Dr Olivia Kessel: 38:15

Yeah, there's a, there's a lot to heal from there.

Tina Mcgillivray: 38:18

Yeah and yeah, definitely we just slowed down. And you know a lot of people like talk about oh, I'm just starting low demand parenting and I always say Don't start low demand parenting until you understand why lowering the demands work. You know, like I'm a mum, I never thought that I would have to learn a wee bit about neuroscience.

Tina Mcgillivray: 38:44

Do you know anything? That when I had my babies and I didn't think I'd have to learn about the frontal cortex and Stuff like that, but I did, I had to. And a lot of people are like, oh, how did you have time? Because my partner works away. I'm on my own. He comes home at the weekend. I work at the weekend, so I'm on my own. I'm a single mom during the week and and do you know what? I just thought I need to do this to save us. So I was listening to podcasts. I really found Robin gobble really helpful and she explained the neuroscience in quite a simple way, and so I was listening to podcasts like yours as well. I was reading books when I was in the bath, when I was cooking the dinner, I put a YouTube on with Steven porges, with Paulie bagel theory or Deb Stena, and I was just getting wee glimmers, we snippets of information all the time learning from other PDA accounts on Instagram, and Just that's how I got it.

Tina Mcgillivray: 39:41

So when people say oh, I don't know how you had the time. I was just utilizing the time that I had, you know, putting headphones on when I was folding laundry, you know you'd also you'd stopped all the other stuff, you know you'd stop the battling with the school.

Dr Olivia Kessel: 39:55

You stopped the battling with the social services. You stopped. You stop trying to get help, you know.

Tina Mcgillivray: 40:01

Really really big emails to people and it's so funny because I remember the same routine, same we're gonna send in this lady and she's in the system. She's gonna write this report on your son and it's gonna be. You know, this is gonna be. And see, when I read the report, I was like I cannot see my son and that's all. And it was just so fluffy and generic and I was like so I then counteracted and wrote a massive report on my son, which I Don't even know if anybody read it. I sent it out to everybody and said this is my son, that report's not my son and and that. That. You know. That was like again, like I'm a mom, when I was acting like a PA and everything, do you know to it to everybody.

Tina Mcgillivray: 40:50

And then, I Don't know, we reached out to cams again. I remember when I was having the really, really dark thoughts I said I really need some help from, like, the mental health. I'm actually quite scared in my house and I'm scared that something's gonna happen. Oh my gosh, we had, oh, we met. She came out and she met us outside because it was just after COVID and it was the most weirdest thing I've ever been through in my life. She started I don't even know, I don't even know, but I did receive a report a few weeks later and she said that she couldn't work within us because he he's not ready or able to talk about his problems and his problems were into direct behavior type of approach in his real environment and because treatment for cams does not tend to be effective or generalized towards a person's real life.

Dr Olivia Kessel: 41:42

Wow, pretty damning of their own service. So they discharged them. We can laugh, because there's a gallows humor in this, isn't there?

Tina Mcgillivray: 41:53

there really is, yeah so now we're looking into it. That cams team didn't have a learning disability team, that's. That's the like. That's what's happening. Do you know? They're not. The cams is not set up to deal with people with neurodiversity, which, looking like as a child's an adult mental health Service.

Dr Olivia Kessel: 42:14

I think that a high proportion of the people that get referred to them I mean, and everyone wants to go to them to get diagnosed as being neurodivergent. Do you know what I mean? Yeah, wow, and and yet. Oh gosh, it's like peeling an onion with cams you just keep getting more and more layers of just wow.

Tina Mcgillivray: 42:35

And see when I speak to some of the other moms, and really dangerous leaving families and really and like, like just having a letter that says we're discharging you because your son's not ready, and you know, like that's really, really damaging and really that that whole service needs Rebooted. And the other thing about the social work because I go about them a lot is Most social work teams don't have a disability team. They don't have a disability team, so the social worker that you're getting through your door is changed in child protection.

Dr Olivia Kessel: 43:10

Yeah, and that's what they're looking for.

Tina Mcgillivray: 43:12

Yeah, they see the lens of child protection and that is that's. That's quite scary for a child who's a family whose child is having quite challenging behaviors, because they look through. They look through the lens of the, because when I went to the HP meeting and social work had totally ignored me, they'd acknowledged I was in crisis just before summer and said we're gonna support you two, three days a week, don't you worry. And I left the meeting that all this could be great, never heard from them all summer. So I went back into the meeting and I can't believe the social worker said something like maybe your son's swearing because of what he's watching on YouTube and I was like I actually stormed out the meeting and I went and cried in the toilet and I thought I've not cried in the school Toilets since I was like maybe 13 and 47 and you know I've never cried in a meeting that anything that I've ever been to, even when I had it like a corporate job in my twenties.

Tina Mcgillivray: 44:13

I never cried people shouldn't be crying in meetings.

Tina Mcgillivray: 44:17

No they shouldn't and then I just mean this boys got a diagnosis of autism in ADHD and Tourette's and it's, you know, it's a to bring to the table. And then when I went back in to get my jacket, I said I'm leaving because that and she said well, you know, I've got a duty of care to bring these things up. Oh, so yeah, that's what I walked out of when I, when I said I'm putting my boundaries up, you know I wasn't getting any help anyway. I I was just being tied in knots by a broken system, like I was the head cop in the tangles of system instruction and services that are absolutely on their knees and I just thought I don't want to do this anymore.

Dr Olivia Kessel: 45:04

And have you just been able to sever all ties with them?

Tina Mcgillivray: 45:07

They, you know, has that yeah the Senko lady phoned me once every six months but I think they were probably quite glad to get rid of me. If I pushed again, I know that it would hurt their purse strings because he couldn't go to the SEN unit here so he would have to go to residential, which would cost the local authority a lot of money. So I think they're just like just nodding. Agree, do you know? Because that's quite that's what it was about. Purse strings was really, do you know?

Dr Olivia Kessel: 45:41

at the end of the day, and honestly, everything you've told me and that you've learned yourself and that I know myself, would a residential placement be the right place for him?

Tina Mcgillivray: 45:52

No, I didn't understand about PDA. Then I hadn't had that light-built moment with the PDA, so at that point I just thought I was really you would be safe there and you were more about safety, wasn't it? I'm safe for him and to give his siblings back a life. And at that point I was thinking it would give me back a bit of a life, do you know? Because I was so burnt out and at that point I was like, yeah, I can't keep him at home, it's not safe.

Dr Olivia Kessel: 46:22

But even when.

Tina Mcgillivray: 46:23

I said that it didn't transpire. But looking back, no, it wouldn't have worked at all. It wouldn't have worked at all because the problem wasn't the education, it was his perspective of drive for autonomy at all times. Do you know, in his PDA.

Dr Olivia Kessel: 46:39

Well, he's lucky to have a mum like you is all I have to say. You know you've succeeded when you've gotten to the other side, which is really impressive, and I really appreciate you sharing your story today, because other parents that are going through this and I know all of your followers too get such hope and inspiration from you Because you've done things differently. You've tried as hard as you can within the system. You really have fought it and tried and then you've taken it away and you've done what's best for your family and what's best for your son, and I love the story of him saying I love you and telling your younger daughter to be nice to mom. What a difference I mean, that's chalk and cheese from someone who's trying to jump off a cliff, and then, banging rocks into their head.

Dr Olivia Kessel: 47:27

So I just have to take my hat off.

Tina Mcgillivray: 47:28

We have such lovely conversations in moments now, but do you know?

Tina Mcgillivray: 47:32

what we just laugh at Like humour is such a desculator for everything. I wish I'd used humour more. It was taking off that parental mask about. I am in control, I am the authority you must do as I say. It was taking off that mask and just saying we're all humans in here, let's just all be human together. And I have big emotions and sometimes I lose it and I have a mum of and do you know what? I'll go in and say that was mum when she was angry.

Dr Olivia Kessel: 47:59

It was funny this weekend. My daughter didn't want to eat her food and we had someone from outside of the family sitting there and you can just, you know, tell they're like you know, she's not eating your vegetables, she's not eating her this. And I looked and she's scowling at the table and I went and put on gold and oldies and then I started singing summer duty and being a total ass. You know what I mean. And she's just going to just, and then she's just going to help herself, you know. And then I'm like I bet I can eat my beans faster than you can eat your beans. Not only did she eat her beans, she went and helped herself to more beans so that she could keep competing with the bean eating competition.

Dr Olivia Kessel: 48:30

And the person that was with me at the table was just looking at me. He's like you know, I've got to learn some of your psychology because that's not how it was when I was raised. But you know, and what a better way. You know what I mean and it's from listening to moms like you, it's from listening to people on the podcast. I wouldn't have known that. You know, my mother would have probably, you know, smacked me, sent me to my room and I wouldn't have had any food.

Tina Mcgillivray: 48:53

It's okay to like pay differently. Like who made up the rules in society, like? Who made up these cultural conditioning rules Like?

Dr Olivia Kessel: 49:00

what men about? 150 to 200 years ago who? Never parented, you know, they made these. And it keeps getting rehashed as new parenting advice Leave your child alone crying in their bedroom. You know.

Tina Mcgillivray: 49:14

And do you know what? We're all humans and like the education system is just bringing these? Everybody's got to conform. It's so sad that society says if you don't conform, then you're not accepted. I don't want, I don't want. I want my children to be thinkers Like that's what we need. We need these creative children because look at the state of the world, look at the state of the world, look at all the worlds and the environment and like everything that's so broken. We need these. We do not want these children to conform. We want these children to say why. You know, I so agree. It's these creative brains, you know, these neurodiverse children that are going through. If they're nurtured just now, they have got different thinking patterns to change Everything that we have broken in mainstream society. You know.

Dr Olivia Kessel: 50:07

I totally agree with you and you know what I think they will and I think that you know it's. It gives us hope and our children are hope and they are inspiring and they will go on to hopefully change the world and look after us in our old doadage when we yeah, when we need them. Now, as we wrap this up, you know I'd love If you could give three tips that you could give to parents to take away and I know that's hard with everything we've discussed, but if you're thinking of talking to a mom like you, what three top tips would you give them?

Tina Mcgillivray: 50:39

I think it's to realise that your voice is the most important in any room. I never knew that, like. I didn't know that my parental voice was so powerful and the voice of my son. I wasn't listening to me and my son for so many years. I was listening to everybody else because I thought they knew what they were doing. Do you know? Yeah, I really wish I'd listened to my Like when my son stood up that day and said you need to keep me safe. That was the moment, like, why had I not been listening to him before, with all his challenging and behaviours that were so scary? That was him telling me that he didn't feel safe and I wasn't listening. The other thing I would also say is to Like, know your worth. Don't let these discharge CAMs letters or people saying, no, we're not putting your child for an autism assessment. Don't, like, know your worth. You know, like, when these letters come through, there's thousands of us getting them in the UK. It's not just you. You know, because when I got this letter.

Tina Mcgillivray: 51:49

Mum is anxious or Mum's spending too much time in the internet. That crushed me and now I know from speaking to other parents on my page that I am not alone in that. And the other thing I am getting so many messages just now of people who are suddenly looking at their child through the lens of a nervous system and activations and accommodating and they're like this is like putting on a new pair of glasses, like I got a message this morning and this lady's like I just got him to school and like it was amazing. She said because I just dropped everything that I didn't have to do, you know, and I get loads of messages like that. I've been speaking to a lady who's actually in London just now and she's like she keeps messages. She's like, oh my God, she said honestly, it's like it's been really foggy and somebody's just lifted the and it is understanding that it's a nervous system disability and that our child's nervous systems and they're going into fight or flight and fawn and freeze. Just it's happening all the time.

Tina Mcgillivray: 52:59

You know, and I think I fawned, I was a fawner. If I'm looking at my nervous system, fawning is where you just sit there and hope that the lion doesn't kill you. I fawned for years Like I was a fawner, I was a people pleaser, and I think I was a people pleaser because I didn't want to be judged as a bad mum, because when your kid is challenging or they are sort of not conforming, you don't want to be judged as a bad mum. So you become a really bad people like really people pleasing, much more so. Like parents with neurodivergent and disabled children become much bigger people pleasers because we're so worried that somebody's going to judge us because they do these letters that we get.

Dr Olivia Kessel: 53:42

Yeah, and even being out in public. You know what I mean. I talked to mums as well. You know you're out in public and then you know people and then you start to become more of that kind of You're pleasing them at the detriment to your child. You know you become like no, don't do that, don't do that. And you know oh you know, and then it's just getting worse over here and they're judging you more and you're trying to and do you speak to me like that?

Tina Mcgillivray: 54:00

I don't hear, you're not listening to me, you're embarrassing me. And then your child is feeling all this blame and shame and it's crushing down on them.

Dr Olivia Kessel: 54:07

And then you're wondering why you get home and they explode and you don't even know who that person was. You know that you're trying to please over there. You know it's yeah.

Tina Mcgillivray: 54:15

Like other people, please, anyone Like the only people that I'm worried about, please, and other people in this my house, you know, and we just have such a laugh these days and we just it's just so much easier. It's just like taking that step back from what society says we should be and mainstream. This is what we do and this is how we do it, and we leave school and we go to an Ivy League college and then we get a good job and then we hustle and we bustle and I'm like no, I don't want that.

Dr Olivia Kessel: 54:52

You know, I think, as hard as your journey has been and as hard as everything you've described to us, it's also given you that super power to scribble outside of the line I had to go through, the journey.

Tina Mcgillivray: 55:02

I couldn't have just bought here, like see that really dark, dark time. I had to go through that. I had to go through that to get to the other side. There was If I hadn't had Ennis with him having the PDA and all the neurodiversity, I would have been a total different person. I would have been just cruising on the mainstream society, not questioning and not asking anything and not realising. And I'm so glad, like what we went through was so hard, I'm so glad that I know everybody says it but he kind of changed my journey and he might have changed my journey to save me and save him. Do you know?

Dr Olivia Kessel: 55:39

Yeah, I totally you speak to my heart. I agree, and I think you'll speak to a lot of listeners too, because it's and I hate anyone saying it's a gift or they're special or whatever Because I yeah, that's a super hero.

Tina Mcgillivray: 55:50

I'm not a super hero. My cape is broken. I've got holes in my tie. I'm not a super hero. But it just put a different lens on it, didn't it?

Dr Olivia Kessel: 55:59

Yeah, and it is. It is kind of like that peeling back and then you're like looking at the world. It's like I didn't even Whoa, you know.

Tina Mcgillivray: 56:05

It's really broken. It's really broken. I don't want to play, I don't like it. That's what I say, I just like. Oh, this is also broken, and I always thought I was saying this the other day I always thought that people in like above jobs were God. Like I remember when I was young, I thought the doctor was God.

Dr Olivia Kessel: 56:29

I mean, I am a doctor and you know it was. I had to actually become disillusioned of that too. I remember when I trained in medical school in Ireland, they would say to me they would go oh Jesus, you know, the patient doesn't need to know what's wrong with him. He'd only bother them. We all know what's wrong with him. And I was like, really that doesn't sound right to me.

Tina Mcgillivray: 56:46

And you know it was. I spoke about this with a lot of the people on my page, like the the sub-post office scandal. Oh yeah, like that resonated with so many of us in this community because these people put their protest in a system and the British justice system and they were being disbelieved and minimized. And no, it's just you, nobody else is having that. I resonated so much with that, do you know, as a, a kid, a, a married, a child in the system, because I thought that these people on the Senko team and the heads of social work and everything they knew what they were doing, these people were gods. And then I realized, no, they don't. They're as much in the broken system as I am and honestly, I think that a lot of them are in the blame and shame part of the nervous system. So they're sitting in total fight or flight because they know they're in a broken system.

Dr Olivia Kessel: 57:38

Yeah, Well, it has been an absolute pleasure, tina, to have you on the show. I've really enjoyed our discussion and I'll be too, thank you. Thank you for listening, sen Parenting Try. Please look in the show notes for book recommendations on PDA and links to Tina's newsletter. Also, if you're listening in Spotify, please rate the podcast by clicking the About button and rating us out of five stars. If you're listening in Apple Podcasts, click on the link to the show and then scroll down to the bottom and you can rate us there. From my data, it looks like those are the two most popular platforms, so I won't bore you with details of other platforms, but your ratings really matter. The more people that I can get to rate the show, the more the show will be shown to other parents and, just like Tina in today's podcast, my goal is to make this information available to as many moms and dads out there so that they don't feel alone with their struggles and they know they're part of a community. Thank you, and wishing you and your family a happy week ahead.