SEND Parenting Podcast
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, Dr Olivia Kessel, and, more importantly, I am a mother to my wonderfully neurodivergent daughter, Alexandra, who really inspired this podcast.
As a veteran in navigating the world of neurodiversity, I have 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.
SEND Parenting Podcast
Neurodiversity in families with Amy White
The episode features an engaging discussion on how parenting a neurodivergent child can lead to insights about one's neurodiversity. Amy White shares her experiences with her son Jack's autism diagnosis and how that journey prompted her own self-exploration.
• Exploration of intergenerational neurodiversity in families
• Amy's journey from her son’s diagnosis to discovering her own neurodivergent traits
• The profound impact of educational environments on neurodivergent children
• Importance of community support in navigating parenting challenges
• Reflections on the journey to diagnoses for both children and parents
• Empowerment through knowledge and advocating for children's needs
Join the private Send Parenting WhatsApp community for support and shared experiences in navigating the complexities of neurodivergent parenting.
Click to join our Send Parenting Private WhatsApp Community today for support and connection with other parents navigating these challenges.
www.sendparenting.com
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. If you're looking for a safe space to connect with other parents navigating their neurodiverse journey, our private WhatsApp community offers support, insights and real conversations with like-minded parents who truly understand. Join the conversation today. You can find the link in the show notes.
Speaker 1:Welcome to today's episode of the Send Parenting podcast. Have you ever looked at your child and seen glimpses of yourself? Perhaps their struggles, quirks or unique way of thinking have made you pause and reflect on your own experiences, especially as a child? Even Neurodiversity often runs in families, with both autism and ADHD having a heritability rate of up to 80 to 90% and dyslexia with a rate up to about 70%. Yet for many of us, the realization that we might also be neurodivergent comes much later in life. Only after we begin walking this journey with our children do we look inside ourselves.
Speaker 1:Today, I'm going to be joined by Amy White Some of you might know her on Instagram as NeuroSpice who's going to be sharing with us her deeply personal story, not just about her son's autism diagnosis, but how that journey led to profound discoveries about herself and even her own mother. This is a conversation about intergenerational neurodiversity, self-reflection and the power of understanding our wiring at every stage of life. So, whether you're curled up with a cuppa or out on a walk with your earbuds, in, join us for this insightful and heartfelt discussion. Let's dive in. So welcome Amy. It is such a pleasure to have you on the Send Parenting podcast to hear about your family's journey with autism and everything neuro-spicy, as you would put it yourself. So could you start us off by just telling us a little bit about your journey with your son and what a little bit of that background is?
Speaker 2:Yeah, so my eldest child, jack, is diagnosed neurodivergent. He's got very complex needs, so I'll give an overview of what his diagnosis are and then sort of talk about the journey of how we got to. Those Sounds good. He was formally diagnosed autistic just as he'd just turned four, so young.
Speaker 2:Yeah, yeah, absolutely was. I think in today's climate I mean Jack's 12 now, um, and I think in today's climate and the wait times that parents are seeing, I do feel and I don't like to use the word lucky, but I do feel exceptionally lucky that because he is, you know again, I don't like the terminology high functioning, but this is what a lot of people relate to but because he is and can appear typically normal, you know, sort of neurotypical in some ways, I think, had we have started the journey later on, we probably would have struggled more in in getting that formal diagnosis. So, yeah, so he was. He was formally diagnosed at the age of four. We did end up going private for that and that wasn't due to wait times, it was, I mean, at the time I was living in Surrey I'm now Oxfordshire, but Surrey when he was originally referred through his early year setting, we were looking at an 18 month wait, which in today's times frames that sounds wonderful, right, wonderful right. But he was all relative. Yeah, he was. He was transitioning to school in. He got diagnosed in the March, in the September he was going to be transitioning to school. So for me I was really like I want people. I want him to start his school life for people understanding him and what support he's going to need. Um.
Speaker 2:At the time I was working um for Bupa um who said, you know, they said to me well, actually, under your, your employment, you've got full health cover for him and we will fund a private assessment for um for him. Brilliant, great um. And sort of four weeks later we were, we started that process. Um, he saw two wonderful clinical psychologists and psychiatrists um who do work for the nh NHS as well. But I felt at the time ADOS assessments weren't offered as part of the, the NHS multi-disciplinary, but it is privately so that's what he had done was ADOS assessments and obviously information gathering from from me and the, the nursery setting that he was in at the time, and it was a very clear cut as the psychologist at the time easy diagnosis, you know, there were no grey areas, so to speak. He ticked every box to receive that formal diagnosis and at the time he did say to me there were traits of ADHD but given his age, it wouldn't be relative to assess him at that time, but something to have on our radar to assess him at that time, but something to have on our radar, which you know fine, okay, and then you know so around.
Speaker 2:Just touching on how we got the diagnosis, is around the age of eight, sort of COVID time, I noticed quite a definitive change in Jack's behaviours becoming more. He wasn't so regimented and repetitive with behaviors, but he was. His executive dysfunction was becoming quite a barrier for him in terms of retaining information, coping with things, um, you know, the sort of impulsivity of things more with jacket is very much more in attention. Um, and we kind of sat on the fence at the time thinking is this to do with covid and all the changes that have gone on, or is there something more to this? And sort of as time went on and he was already on a wait list for an ADHD assessment, they'd naturally put him on this. Um, we were now in Oxfordshire and he was now under CAMHS, um, and I remember speaking with the GP and saying, actually, you know, I've got some real concerns now, um, and we sort of were trying to battle with CAMHS to, you know, to get that assessment done. We got to the age of 10 and we were still no further forward with the NHS route, so to speak, and things were really sort of hitting a catalyst at this point. So we decided to go private for that assessment.
Speaker 2:And again, they'd done the assessment and when they'd done the QB test, which is part of the assessment, which is when they look at like the inattentive side of things, the highest you can score is 100 and he scored 100. And the assessor was like actually he could have gone over this if the capacity allowed. You know he was so significantly impaired by his executive dysfunction and, um, you know, sort of retaining stuff if it's outside of his interest, you've got, you've got about, I think they they tracked it at about a three to four second sort of engagement level and then he's just off, you know, in his inattentiveness was off the records. And so you know he he received a formal diagnosis of combined ADHD because he did reach the criteria for impulsivity and, you know, hyperactivity as well. So they gave a combined diagnosis of ADHD.
Speaker 2:Alongside this, jack's always been a very anxious child as well and you know sensory wise. So you know he'd also received separate diagnosis of acute anxiety and sensory processing disorder and hypermobility, which was identified by an occupational therapist. So we had a whole array of colours of diagnosis for him. His most recent diagnosis that he received just around 16 months ago was of Tourette's, and how we came to that diagnosis was Jack had always had vocal tics we called them. We always noticed an influx of these when he was anxious about situations. Predominantly just would be like throat clearing and stuff.
Speaker 2:And we hit a crisis point in September 20, I've got to think of the years now, so last year was 24. So September 23, when he was transitioning to year six, you know, and we can talk about Jack's school journey, but this is right now is about his sort of diagnosis. So he hit a huge, huge crisis point where we ended up removing him from mainstream school because it was significantly impacting his emotional well-being, to the point that he said to me that he didn't think he would survive another year. He thought he was going to die from stress. You know, it was a very, very dark time and when we removed him, around two weeks later he developed this involuntary full body tick and it was like he was having a fit, okay, and his whole body would tense up, he would collapse, his legs would give way and it was really stressed.
Speaker 2:You know, distressing right it was absolutely for him and for us and we have a great relationship with his gp and um. But at the time he was actually on annual leave. So I called 111 because I was. You know these they were increasing, they were, they were not decreasing and he was getting really sort of distressed by him and their initial view was, you know, observe for like 24, 48 hours. If there's no respite, they're not declining or they're getting worse. Come back to us and in around sort of 24 hours of having that call, he was then having around 200 episodes, you know, and they were literally paralyzing his body. It was awful, absolutely awful to see. So we ended up calling 111 this one it was about half past 10 at night um, he was so distressed and they said, well, we're gonna send like a, we're gonna send a first response, car out because clearly he's not in a good place, um, and they were at our house within minutes, um, and they could see, you know, he was having these. You know we thought fits at the time, um, like on the floor, you know, he was literally giving away and his whole body was turning to stone and they were lasting 10-15 seconds and he'd have a minimal respite and it would happen again. So we got taken into the, the local A&E um, and they did all the medical observations to see if there was anything medically going on. Um, everything came back clear. There was no medical underlying you know, no infections, no, nothing. And um, I never you know.
Speaker 2:The consultant said to him you know, jack, when these are happening, what's going on in your mind? And his response, I think, will stay with me, I think, forever. Um, he said I'm getting flashbacks of school. And the consultant said what's going on? So I explained the situation that we'd had with mainstream school and that we'd removed him from the setting and he said these are. And then we talked about tics and I said he said has he had tics before? And I said yes, he quite often has vocal tics. And he said I think this is PTSD triggered. He said it's, you know, when you take a soldier out of the war zone, it's you know, they're constantly in fight or flight when they're at war. You take them out of that war zone. They then have time to process what they've been through and ultimately it triggers PTSD behaviours. He said and, given his neurodivergence complexity, I think this is triggering these tics. And he said look, we're going to refer you to sort of like the neurology and psychology team, and they came the next day.
Speaker 2:We were kept in for quite a few days because these tics were not subsiding and they were. In the end they had to give him diazepam to try and give him some form of respite because had slept, you know he was he was not in a good place, um, and you know a very long story short. After lots of sort of conversations with them and looking at background information, they uh were comfortable to give a diagnosis of Tourette's because he had suffered with tics, you know, for over 12 months, um, but this acute episode was triggered by PTSD and they said, you know the, the only way that you know it's going to be time basically to fit these two sort of subsides. You're going to have to ride through this, this episode they're basically called episodes, right? So I think we ended up being discharged, um, with a course of diazepam, um, just to you know, and they said it's to help him ride through that episode and it lasted around two weeks. Oh my goodness.
Speaker 2:And at this time I was you know, I don't think anyone ever does better research than a worried mum right, I was like there's mi5 at this point, right, and what can I do to help him? Um, and he had been on ad. So I think what's important as well, he had been on ADHD medication and I understand, you know, and I will advocate for anybody taking medication that gives them a better quality of life. But what we established was that actually Jack's ADHD then being suppressed very much brought his autism back up to the surface. Brought his autism back up to the surface and actually that was really difficult. He finds it difficult to live with his ASD being more prominent than his ADHD, because it restricts him far much more socially. He becomes far much more regimented and repetitive with behaviors, whereas ADHD allows him to live a little bit more flexibly. So we made the decision at this time that actually we don't think ADHD medication was appropriate for him.
Speaker 1:Had you tried? If you know what I'm asking, amy, have you had you? Had you tried different types Cause?
Speaker 2:there are.
Speaker 1:Yeah, we tried the non-stimulants as well.
Speaker 2:We've done stimulants, we've done non-stimulants, we've done combined Um. And I think you know, from a parent perspective I found parenting the ASD Jack far easier because his executive dysfunction wasn't as impaired Like he would remember things, he'd be more sort of self-sufficient with stuff. But it was then leading to social isolation. You know he wasn't wanting to leave the house. You know he was becoming far more distressed if routines changed. So although his ADHD can be, for me as a mum can be quite difficult because I have to micromanage his every day. It's like Groundhog Day right Every day I'm like go brush your teeth.
Speaker 1:Trust me, I know.
Speaker 2:Go, wash your face, go and do all these mundane everyday things that you do every day, that you just do not seem to retain, and I have to be there to prompt and remind you, right. So, but that you know, we're mum, that's what we do. So you know, and for us it was about what Jack wanted. You know, his voice absolutely matters. And he said to me you know what I prefer, how I feel when I'm not taking this medication. Fine, I will always respect that.
Speaker 2:So we then looked at alternative medicines. So you know and I'm, you know, I'm a great advocate for that too, you know. So I've done some research and we looked so and we started him on magnesium and lion's mane, and he was still having these tics right. So when he then started the magnesium because I looked to see how that can support the nervous system as well and within five days taking the magnesium, all tics stopped. Was it coincidence? I don't think so, because there was an air and at a time where we actually ran out of magnesium for a couple of days, there was a bit of crossover from the next lot being delivered and actually we saw, not to the extent what they'd been, but we saw an influx. You know, that's those flutters of ticks coming back.
Speaker 2:And then once he was back on the magnesium, again we saw, you know, that they completely subsided and you know, and with the lion's mane again, his executive dysfunction is still quite tricky to manage, but we found he was at school, he was able to engage better and stuff. So he's on that, he's on natural supplements now and I think for us that's the way forward for him, right, and whether that changes as he gets older and he decides to make those independent decisions entirely up to him. So he has a very, very colorful sort of. So he went back to school, though he went back into a different school.
Speaker 2:No, he's now in. So at this point, so when this was all going on, I was we were looking at phase transition for him to go to secondary and my view had always been that secondary was never going to be mainstream, was never going to be appropriate for him. You know. Know, because you've got to look at the fact that there's different teachers every hour. You know different styles of teaching from those teachers. You don't get the continuity of support, environmental factors, big class sizes, having to move classroom every hour.
Speaker 2:The social side he's very vulnerable socially. You know. He has a very strong moral compass for injustices and things and he can't even cope with hearing people swear. So you know, you know what it's like. You go to secondary school. It's a whole different ballgame to primary and I thought he's going to. He's not going. It's like I might as well just thrown him into a cave of lions. It was. It was never going to work and I was not prepared to experiment either. You know my child's mental health is not an experiment. So at this point I'd obviously said to our local authority to I wanted to explore specialist and actually when he was in hospital with the ticks and really, really poorly was actually when I got the email from our case officer saying that the local authority had decided that he didn't require specialist provision and that his needs could be met within a mainstream school.
Speaker 1:Not a surprising response, no.
Speaker 2:But to say I then unleashed hell on him was, yeah, you don't cross me when it comes to my kids. And I was like, no, we're not having this over. My dead body is my child stepping foot in a mainstream secondary school. And I went to town with and this is when I started my journey on training under the you know, the SEND legislations and sort of learning of our rights, you know, because knowledge is power, right and to battle these people, you have got to be educated because they will gaslight and smokescreen you at every opportunity.
Speaker 2:So I was just like like not having this, so done all my research, I'd enrolled on training courses and I threw everything at them and I got, and I was the biggest thorn in everyone's backside, like I was dropping into anybody of seniority's inbox multiple times a day. Right and I. I even sent photos of him laying in hospital and I said so which one of you wants to take personal accountability when we're back here again? Because that's what it will be? I said and it's not happening. Um and lo and behold, I didn't even get to the point of logging a tribunal. Within four weeks they did a u-turn and they agreed to specialist provision and they also agreed to my choice of an independent specialist school. Brilliant, wonderful, go, mummy. I mean I remember.
Speaker 2:But you know what the stress that put me through. I remember at one point saying to my husband that all my eyes were twitching. You know I couldn't. It consumed my every single thought. I absolutely consumed me. Um, and I remember saying to my husband I think the stress of this is going to cause me to have a stroke. I said I am so stressed, I, and I've said this so many times to professionals and parents alike we are only as happy as our unhappiest child. And my child is on the floor and I will not stop until he can thrive. You know, at the end of the day, it's my duty to do, and I remember the day he was born, right, I remember the day that he was placed into my arms as a baby and thinking until I take my last breath, I will do whatever it takes to protect you and give you the best possible life. You know, and and I and I live by that you know, my children are everything to me. Um, so we, you know, we won that battle. You know, very quickly as well.
Speaker 2:Right, you know, I was geared up, okay we're gonna have to go and you know he was never going to go into a mainstream school. I would have kept him at home and I would have fought for alternative provision and I would have done whatever I needed to do. But you know that I think they learned very early on that I was a mum that was not going away. Um, so, yeah, great, you know, we, we got awarded the independent specialist school, which he, then I decided that it was best that he transitioned after the festive period, because we were now around sort of end of November, mid-december this was, and I said, look, he's got Christmas, I need time to prepare him for this and whatnot. So he joined his independent specialist school. And they are incredible. I can't blow any more smoke up their backsides if I try right more smoke up their backsides if I tried right, like, literally, I just.
Speaker 2:They have been life-changing, not only for me as my, but for Jack right, and they were, and their ethos is we work around the child. The child doesn't work around us. So that you know, and they very much keep me involved with everything they were like like to transition him. What do we do to make this work? We want this. You know he's got such a negative view of education. Now you know an education setting, um, you know what do we do to make this work? We want this. You know he's got such a negative view of education. Now, you know an education setting. You know what can we do?
Speaker 2:You know, we did a very, very gradual transition for him and we did, like the first term where he was on a very reduced timetable, but he instantly engaged, instantly. You know, I think he, jack's a very good judge of character. You know he gets the measure of people quite quickly and he could see that they had his best interests at heart and he's just gone from strength to strength. He's now transitioned to their secondary placement. So he, which was this September, just gone, obviously, he's now year seven and again, the continuity of care that he's received and the level of understanding that they have for him, you know, and the opportunities that he has. He's a different child. If someone had said to me he would be where he is now emotionally, you know, and sort of his own awareness and his own ability to self-advocate has. It's a child I don't even recognise in a good way, right, in a good way Like these are things that he's achieving, things now and that I never.
Speaker 2:You know, there was a time in life where I didn't know if Jack would ever be able to live independently. You know, I just, although you know he's very academically able, he's very savvy and switched on in some ways, but in other ways he's very vulnerable. You know it's very complex. So, you know, as a mum, you do we overthink everything, right, um, and I did. I had big concerns, you know, will he be able to live independently? And the more I see him progress, the school he's at now, the more that those, those fears are diminishing. You know, I can, I can really sort of see how he's got a real self-awareness now. Um, I think the biggest thing for me, I said to him a few weeks ago we were talking about school and he loves going to school. Now, right, gets up every day, even during the Christmas period.
Speaker 2:He said to me which he has never said in seven years of education I can't wait to go back to school. I'm sorry, what can I? I was just like those words have never left, you know, and that for me, just it just says everything. And I said to him what you know, and I said to him the other day what do you love most about your school? And I was expecting him to come back and say the unlimited meat subs that he gets to have, right, you know, a real sort of undepth response, and his response actually floored me. He turned around and said to me I'm no longer the shadow in the light anymore. And I was just like huh, he was just like I. Finally, he said I finally feel like I can be me.
Speaker 2:You know, he doesn't mask nowhere near as much. You know, he's very much more authentically himself. He's very aware of what he wants and what he wants to be, and but not only that, to voice it. I think his voice was shunned for so long because he was saying when in mainstream school, I can't cope, I can't do this, and all the time. You're fine. You're fine. You know he was totally disregarded. You know his opinions and views didn't matter when he was in mainstream school, where now he's so listened to.
Speaker 2:That he is developing that self-worth and that, for me, I think, do you know what? Yes, he's academically bright, but I think for any human to thrive in the rat race of human life, you've got to have self-worth, you've got to know that you're worth something and you've got to know that you deserve to be here. And there was a very long time where he didn't believe that there's still a lot to do. There's still a lot of work to do with him. You know, and the school said to me, you know, after he'd been there a while, they said there is a lot of trauma here that we need to unpick, you know, and that will take time. But I can already see that unravelling. And not only are they unravelling it, they're also putting the provisions in place to so he's never made to feel, you know, less of himself for having those thoughts or feeling the way that he did.
Speaker 2:And actually he doesn't blame himself anymore, like why am I like this, why can't I do this? He now understands that this was never about you. This was about other others not understanding you and supporting you. You know, and I think I very much always involved Jack in the journey as well, because I didn't know how it was going to go or how long it was going to take to get him in the right setting. But what I wanted him to know was that I had his back and that I would fight at every step to get him to where he is. I needed him to know that, no matter what happens in life, I will fight that corner until there is no corner left to fight. You know, and he always says that, and he and he always says you know, I know how hard you worked, you know, to do this and he's you know, he's really grateful, you know, and he shouldn't need to feel grateful, but obviously he appreciates that as a mum that you know, I'll always go above and beyond for him so yeah, it's, it's.
Speaker 2:But what's really lovely is now as well, is that I can now do the work that I do because he's OK. You know, in the midst of when I was going through all this with him, I wouldn't have had the mental capacity to support other families and give them the level of care you know a need that they have when you're fighting for your own child. So now, knowing that he's I mean, we still have bad days, right, he's human, he's going to have bad days, but it's how it's supported and how it's recognized. Like I get an email every day from his tutor. This is how his day's been today. This is what's gone on. If he's found something tricky, they communicate it to me. So that communication is absolutely key because he'll come in through the door and I'll say to him you had a good day today and he's auto tuned response go, yeah, fine, and actually he may not have had a good day. There may have been things, but he needs time to process that and come to me. But what will happen is in the meantime I'll get an email from school saying he's had a good day, he's done really well in these areas, but there's been some difficulties, so he found this a little bit challenging or this a little bit overwhelming, and by me having that information, I can then go and speak. When he's ready to, I can speak to him about it. And then he's like oh yeah, yeah, that did happen.
Speaker 2:Because Jack's natural reaction and I think it's the way his brain was wired due to being in the wrong school for so long is that when something crap has happened because he was so used to, his default is shutdown mode Right. So he just shuts down Like I'm not going to talk about this, because what's the point is shut down mode right. So he just shuts down like I'm not going to talk about this. Because what's the point? Because no one's going to listen to me, you know, or it's too difficult for him to process to. Then he's got it all up here.
Speaker 2:But that executive dysfunction can sometimes really give him that, that barrier to be able to relay that to me. So by me having that information from school, he doesn't need to worry about that processing barrier because I can say well, at school said that this was a bit tricky for you to say, and then he'll be like, yeah, yeah, it was, but then we did x, y and z and it was okay. And then so I can say, oh, so that was good, they listened to you and they, you know they supported. So it's just trying to rebuild and rewire for him that it's okay to talk about this because you're going to get supported.
Speaker 2:So you know, I don't doubt that hormones are very much on the horizon now. So I don't doubt that we're going to come across challenges and we're going to have difficulties and stuff. But I do feel now he's in a provision that supports, that supports me as mum as well, which takes a lot of the pressure off as well.
Speaker 1:And you're coming from a place of strength now versus a kid that's shattered and in hospital on diazepam.
Speaker 2:Yeah, exactly.
Speaker 1:So you're coming at whatever comes ahead of you. Yeah, definitely.
Speaker 2:I mean, I've acquired a lot of wrinkles and gray hairs during the process of it, right? And I always say to him if you become rich when you're older, you best be looking after me in my old age, right?
Speaker 1:So he's like yeah, I'll look after you, I'll look after you.
Speaker 2:I'm like, yeah, thanks, thanks very much. So you know, yeah, it's been a very eventful journey with Jack, but you know what it's made me not only the person that I am today, but the mum that I am today, you know, and, and I hope that when I work with the clients that I work with, I kind of give them that fire to say, you know, because there are a lot of parents that will come to me and be like I'm really scared to challenge this, or I'm really, and I'm like, don't, I'm like, don't be scared, you challenge it, because if you don't fight for your kid, no one else will. Right, you've got to be that voice, don't? You know? You are the expert on your child. Nobody knows the child better than the parent.
Speaker 1:And so many times parents are gaslighted to believe that they don't know what's best for their child. And that is it's funny. It's funny because, like I'm a doctor, right, and people have the same experience with doctors, going to doctors, you know, you, you know. But as a doctor, with teachers, I had the same experience too. Do you know what I mean? I thought that they knew best. You know, but you are kind of programmed to believe that until you're so proven, so wrong, that then you lose all trust. You know, and it's not even with the local authorities.
Speaker 2:You know that's another whole layer. I work nationally with local authorities, right, and I'd love to come on here and say it's a really positive experience, but it's not. And I often wonder how half the people that work in these places go home and sleep at night. Right, because they're not working for the best interest of the child, because if they were, I wouldn't need to do the job that I'm doing. You know, and it's.
Speaker 2:And as parents, if you're very new to this journey, you know, or you know some parents don't, they don't have the confidence themselves to navigate it. If you're told something by your local authority you know somebody of sort of a profession, you naturally assume what they're telling you is gospel, right. You naturally think, well, ok, that my child must not be entitled to that, or I can't have this, or I can't advocate for that because I'm being told I can't. And actually there's not enough information out there to, you know, educate these parents to say, actually, this is not right, this is not right. And this is where I sort of developed my platform to be like, actually, you know what I'm going to try as much as I can to get these messages out there and create the content that I do to, because not all parents can instruct me right.
Speaker 2:There's only one me. There's only one me. There's only so many cases I can take on and support. You know, and from financial perspectives as well, not everybody has the financial capacity to instruct somebody, to support them in the journey. So what I do alongside that is create content that educates parents to be able to say well, actually I know this information now and I'm going to use that and utilize that to get my child what they need great, you know. So I'm trying to cover all bases because, you know, I don't ever want another parent to have to go through what I went through. You know, that was a real, that was a real turning point for me and I just thought it's a very. Although there is a huge SEND community, right, and it's an amazing community, nobody supports other parents like the SEND community does. But when you're in the midst of that battle, you can't help but feel so isolated and alone.
Speaker 1:You know it's almost like you don't belong to the Zen community. You almost have to get. You have to have your wounds before because you don't know that you're part of the Zen community in the beginning.
Speaker 2:Do you really, Until you've gone through the war zone, right?
Speaker 1:And then you know you're battling your way to understanding, and you know you're battling your way with your child, and then you can often be battling your way yourself as well. You know, I know from your you as well, from your journey. You had a light bulb moment where you looked at your son and then had some realization yourself.
Speaker 2:Absolutely. And I, you know, I always say I owe so much to Jack, you know, and I've got a daughter as well. She's wonderful, she's just turned four, but obviously my journey to becoming a mom and actually understanding me start, and I always say the day Jack was born was the day I was born. I don't feel like, you know, my life finally sort of made sense, and I say that and I don't say that lightheartedly. You know I spent, you know, I was 27, nearly 28, when I had Jack and the part of my life leading up prior to having him, I didn't really know why I was here. I just felt so I didn't really know what, why I was here, I just felt so I didn't feel like I belonged anywhere. I've had an amazing group of friends since school and I'm very lucky that I've got that group of friends who've never judged me. They've always accepted me for who I am. You know we've got a very close, you know, sort of friendship circle. But I always felt like an outsider, I felt like I haven't understood certain social things or, you know, and it was, it was a light bulb moment and people always because people. But it took actually a few years being into Jack's journey to have that light bulb moment, because I think I was so hyper focused on him and supporting him that I didn't, I didn't even come into it at this point. It wasn't until I took a little bit of a backstep as he got older. The more older he got, the more I could relate, relate to him, and I think people used to say to me oh, you understand him so well, how do you understand him so well? And I used to say because he's me and that's why he's me. You know, um, and I see, you know I could foresee things that were gonna be a barrier for him or difficult for him. Or, you know, I would advocate for things before he'd even have to say anything, because I think I know how I felt in that situation and I just naturally knew that's how he felt and how he was feeling. So I could, I could support that, um, and I think it was.
Speaker 2:You know, I knew from a young age there was something different with Jack, from sort of around the a year old, and I, if someone said to me now, did you think he was autistic? Then no, I didn't, I didn't. I didn't because I didn't know, I wasn't educated enough For me. The only thing I knew of autism at that time were children who were delayed development, you know, nonverbal and sort of in their own world. And that was never Jack. He never presented in that way.
Speaker 2:You know he was very articulate, he was very forward coming in his milestones, but I could see that he was very rigid in his ways. He required routine. He didn't like change. It was more the sensory things as well. Like you couldn't have a phone ring, you know he'd only tolerate me touching him. You know he was very, you know. And foods, foods was a big thing, food, you know. So I could see all these things. But again, that you know, going back this is going back 11 years there wasn't the social media awareness now to understand the spectrum of autism, right. So for me I knew there was a difference with my child. I just didn't know what it wasn't until he started nursery and then obviously the nursery area were really great and said, actually, you know, these are our concerns. And then again mi5 research, as mums do, I started understanding this whole spectrum and I was just like, okay, this is my child then.
Speaker 1:And then how did that lead to youth then? And then thinking that, yeah, you know, going along the journey and I think it was more.
Speaker 2:It was more when Jack started school. Yeah, I think it was more when he started school because for me and understanding myself more now I don't remember a lot of my early years and think a lot of that is, um, just through the trauma. You know, trauma not being understood, nobody understanding me or me finding life very, very difficult. And I always say when I found something difficult, it gets locked in Pandora's box and it goes away, because then I don't have to think about it.
Speaker 2:Okay, and whether that's a healthy way to do with it, I don't know, but it's how I've. It's how I've survived nearly 40 years on the earth. Right, something happens. I do process it in my way, but then we lock it in Pandora's box. I don't want to think about it, it's done.
Speaker 2:Um, so I don't remember a lot of my very youngest. The only one core memory I have of a very early age I was around three and my parents had taken me to preschool for the first time and I can still replay it in my memory now like a video clip that I remember going into this preschool, my mum walking out, and I can still replay it in my memory now like a video clip that I remember going into this preschool, my mum walking out and I was stood in the make-believe play area and I just froze Now I know you've got like fight, flight, freeze, fawn, right. I froze and I just went to statue and all I could see was all this chaos going on around me, right as what preschools are like yeah, crazy, noise, everything. And then I remember just being frozen to this spot I couldn't even tell you how long for, but it felt like an eternity. And I remember the caregivers working there, trying to engage with me, and I just not responding. And these million thoughts running through my head of why I'm here. It's so noisy, why are children trying to touch me, me? Why are children trying to play with me? Oh my god, when's my mum coming back? Am I going to stay here forever, like all of these different thoughts?
Speaker 2:And then something must have just cracked and I just lost it. Not like volatile, I've never been a volatile child, but I just absolutely fell apart. And they phoned my mum and were like you need to come and get her. And they I think you know we're going back to 1988. There's no such thing as autistic females. Right at this point, you know, um, we don't exist, we don't exist, yeah. And they said to my mum we don't think you should bring her back on the first session, right? Wow?
Speaker 2:like we don't think you should bring her back. And my mum just sort of looked and could see how just like I've literally just gone into like complete shut.
Speaker 1:I was now in a shut down mode.
Speaker 2:I wasn't like responding to anybody.
Speaker 2:I could hear him and I could still even remember now people hearing people talk to me. I just couldn't respond. And I remember then going home and I remember hearing my parents have a conversation and my mum at the time she was like she was a little self-employed, cleaner, she'd go out to people's houses and clean and stuff and she said to my dad I'm going to have to take her with me, she can't go, I'm not sending her back there, she can't go. And he was like okay, and I never went back. And then it was, you know, until I started school and I have fake memories of school and stuff, the primary journey, knowing that she was always there. If I needed someone to play with at playtime I could go and find her Right. But I found it really challenging, really, really challenging. But it was so. When going with Jack it was. Then it was almost like I then locked that into Pandora's box. Right, I grow up again with adult life and I just try and navigate it the best I can and I think no one else thinks the way that I do and I just need to accept I am who, I am Right. And then Jack starts school and it's like that Pandora's box got shifted back to the front of my brain and it was just like I used to feel like this, I used to cope. This is exactly how I was, you know. And so for a good couple of years I just to myself, I thought the apple doesn't fall far from the tree, right? And but then it was my husband who actually said to me because, again, being autistic, right, we like validation, we don't like, I don't like gray areas, I like black or white, I mean, yes or no, I'm not going to identify as being autistic unless I go through that process and a professional tells my aunt, because's, there are lots of people who self-diagnose, advocate for it. That's great, that's not me, that's not how I work. Okay, I've got to have the factual information to be comfortable to recognize and identify with that.
Speaker 2:And my husband said to me you know, I've always struggled with my self-worth and you know and who I am and things, or getting overwhelmed with certain situations. And he said to me why don't you, why don't you just find out for sure? And I was just like, okay, like I hadn't really something, I hadn't even thought to do it right. But again, that's just, again, that's my right, that's my one track mind like that's a theory. I don't.
Speaker 2:I can't think out the box outside of my special. You put me like on a case with my clients and I'll think outside the box and look at every different avenue that's coming out. But when it comes to me or navigating things for myself, I don't really think outside that box. I kind of need somebody to sort of direct me, and he is, my husband, is massively my safety net, you know, and he sort of said I think it would do you good. I think I think you know, and then you maybe you'll be a lot kinder to yourself, because I used to be so hard on myself, right, like we'd go to social things and it'd be like nine o'clock, my social cup's full. I don't want to be here like I love you guys, lovely to see you, but bye-bye, right, I'm done.
Speaker 2:You know I'm not one of these people that will be the last one standing you know and it's a common joke between my friends that I get tagged in memes, that you have a note up at your party saying please leave by 9pm because I'm done right, I'm tapped out. And also, you know, I'm very blunt in like sort of how I speak and stuff and it's always comes from a good place. I'm not. You know, I don't ever intend to be a malicious person, but I will be sort of very much say how it is, but then I would go home and ruminate on that for hours, or should I have said that oh god, what are people thinking of me? Or what's this? And and my husband said to me you know, maybe you'll be a little bit kinder to yourself if, if you know this information and he was right, you know.
Speaker 2:So I went, I went to, and it took a big step for me to go to the GP and he always laughs because he's like you're the first person to tell somebody go and get help, go and get something sorted, go, whether you need therapy or you need this. That I'm the first thing. Go and do it, look after yourself, you matter. And he's like it's about time you practice what you preach. And I was like, yeah, I hate it when he's right. Right. It causes me physical pain to say when he's right, so I was like he sounds like a good, he's a very good can we not tell him that let's edit that bit?
Speaker 1:out. Right, let's not okay do that.
Speaker 2:But no, he is, he. You know I would be lost without him. He's absolutely my safety net, um, and you know. So I went to the GP and it took a lot of guts. He kept. He had to prompt me a few times to book the GP appointment.
Speaker 2:And then, you know, on a whim, this one day, I think, I was driving home from work and I thought I'm gonna ring, I'm gonna ring, I'm gonna ring um, and so I made an appointment and I went and saw the GP and I'd done my research on the right to choose pathway. So I went in GP was great, and he said look, you know, we'll send you out the forms and then obviously fill those in, send them back. Obviously we'll need your parents because they need, like, the background information, right, like to see, like from young years, um, and we'll send it off to one of the providers to and obviously they'll see whether you reach the criteria for an assessment or not. Fine, so you know, and again, even doing those form forms was a bit like, oh, yeah, oh, I am right, but again, I still needed that validation. So you know, and obviously my mum, she'd done the forms and my mum was like it makes sense now, like to her. It made quite a bit of sense and I think you know she was just like oh, that makes sense, why you were like that or why you would be like this. Um, you know, and she sort of you know, we, we did it together and it was all documented and sent off, um, and they accepted the referral and you know, in six months later I had the uh assessment done with the clinical psychologist.
Speaker 2:Um, you know, we spoke in great depth and you know he said to me it's, it's very evident from your your history, presented from your parents, and you know your husband and how you are now and obviously, our conversations. That you know. Yes, the apple doesn't fall far from the tree and I'm very comfortable to give you an official diagnosis of autistic spectrum disorder. Um, he did also raise um adhd traits, which I, which I think we all know, I think it's like a statistic that 70% of people who are autistic are more likely to have ADHD.
Speaker 2:Right, and I can, but I do think I'm more ASD than I would be ADHD and he did touch on that and there are things that I can relate to for ADHD females. Like there's certain things that I will procrastinate doing until I absolutely have to do it, like from a person, not a professional perspective, like from a personal perspective, like I will put off doing things and then I'm like I leave it till I've got to do it. There's no choice, but it has to be done now, and then that kills the ASD part of my brain, right, because I'm just like just let you do it, why are you procrastinating? So? But yeah, so I think there is probably a dual thing there. But I'm comfortable just to have the official ASD diagnosis and you know what From that moment.
Speaker 2:I sat on that, on that meeting, and I did, I really cried. I really cried to the guy and he said, you know, and he was a bit sad, and I said I'm sad for the little little me, but I'm relieved for the older me, and that's it. You know, that's the, you know the definitive point. And I think this is why, you know, we, we advocate for early diagnosis. You know, because there are a lot of my generation in particular coming forward and going. You know, I think back to people I went to school with and I think, well, bloody hell, that makes sense, do?
Speaker 1:you know what I mean.
Speaker 2:You can identify and understand more. But I think, had I have known all those years ago, maybe my path would have taken a different route. I don't know. I certainly wouldn't change anything I've been through, because I always think it leads you to where you're supposed to be. But I think that aside, what would have happened during all those times would have been a lot kinder to myself.
Speaker 1:Well, it's kind of like what your son said so eloquently. You know he was in the dark and now he's in the light. You know you were in the dark for quite a long time. I do, and I'd like really challenge.
Speaker 2:I used to be so hard on myself and find anything difficult, where now I'm not. Now I'm just like well, that's okay, you understand why you're like that and I don't ruminate on things as much anymore. You know a silly example. So yesterday my younger sister she collects Jack from well. She meets Jack off of his because he gets a taxi to his special school, and she meets him off the taxi on a Tuesday for me, which enables me to take my youngest to her ballet lesson and I'd already, because Tuesdays are a very busy day I'd already sort of prepped and preempted dinner for that evening to do when I got back from ballet.
Speaker 2:And my sister is ADHD, diagnosed ADHD, and we could not be more polar opposite. We are like chalk she is the chaos and I'm the calm. We are total polar opposites. And so she just rings me up on a whim and she literally crucifies my autism on a daily basis with her ADHD. So she just rings me up on a whim and she literally crucifies my autism on a daily basis with her ADHD. Right, I'm like I can't deal with this level of spontaneous. This is not good for me, Right? You know I need to be, I need to be plucked.
Speaker 2:So she brings me up and she goes, and it's so minimal and so silly. And she goes because she's got. She's got two children and her oldest boy who's four, and she said, oh, both the boys want a mcdonald's. So, um, is it okay if I take them for a mcdonald's? Well, I've prepped dinner and she was like don't be such a loser. And then she was like. She was like your kid, I'm offering to take your kid to mcdonald's and you've got a problem with that. She was like get a grip. And I was and that's how we are with each other, right. And I was just like because you, I'm impulsive.
Speaker 1:You don't like changes in routine, deal with it to process it.
Speaker 2:And then you know what, and I think, and now we'll laugh about it, right, and in five minutes, that's fine, I'm happy for him to go and get a McDonald's, right, because I've had a lot of time to process it. And then we laugh about it, right, but before both of us probably would have ended up arguing about that and then I would have felt really crap and ruminated on it all night that my kid just wanted a McDonald's. Why was I not okay with that? You know, I just would have been.
Speaker 2:Really we're now we're a lot more gentle about it and we're, like she even said, I'm gonna give you five minutes to process this and then I know you're gonna to be all right with it. And you know I was like, of course you can have McDonald's, it's fine. Like the chicken can stay in the fridge till tomorrow, that's fine. But it's just those moments when I'm caught off guard that afterwards would have caused such a ripple effect to how I would feel about myself. Or, you know, give a real hard, hyper, focused, difficult time to. Why are you being so ridiculous about your child having a McDonald's, when I'm like it's okay, it's because she sprung it on me. I wasn't prepared for that.
Speaker 1:I've had time to process it and of course it's fine, you know and, and you both are coming from the same place of understanding, which is beautiful too. You know you. You both are understanding each other. You know you're understanding her as to why she's stopping, you know, unplanned at McDonald's, and she's understanding you why this is difficult. So you're, you're both on the same page, and that's kind of what a label does.
Speaker 2:It does for you is it enables you to understand each other and that's what infuriates me when people say why do you want to label yourself, or why do you want to label your child? You'll get a label regardless, so I'd rather have the right one.
Speaker 1:Well said, amy, well said. And now, what about your mom in all this, because I know you've talked about that as well? Yes, tell us a little bit about your mom.
Speaker 2:So my mom again has been on her own journey, you know, and I'm really really proud of her for this because I think, particularly you know, we're talking of a lady that was born in the 60s, right. So you know she to really sort of and she, you know, from the moment Jack was diagnosed and stuff, she has been wonderful in understanding it and supportive of it. You know, there's never been any denial factors or anything like that. They've just completely embraced it, done, you know done, and always do what he needs to do. You know, and it turns out we've got a very neuro spicy family, right. So, like I said to you, my sister is ADHD and her eldest is on the pathway. He has a provisional diagnosis of autism. I mean, he's like a carbon copy of Jack, right. So we were like, we know, but we just need the professionals to clarify it as such. So you know, we come from a very understanding family anyway and I think my mum had had her own battles throughout her life, you know, and she will always speak quite openly about those battles in terms of mental health, you know, and really really struggled. You know she had a very difficult time when you know she was born in a generation where her elder siblings were nearly two decades older than her Right, so she was a very much a surprise to older, much older parents. And that wasn't, that wasn't a thing in the 60s, right? I mean, they thought my mum was the menopause and then she arrived and they were like, oh, maybe not the menopause, okay, so you know, she had. You know it was a difficult time for her to think, you know from her own personal experiences. And then she, she lost both her parents very young. So she was, um, trying to think she was 19, I think, when she lost her mum and 21 when she lost her dad. And on top of that she had two young children. So she had my older sister at 19 and me at 21.
Speaker 2:So, yeah, she, she had a lot to deal with and obviously back then post-natal depression wasn't recognized, you know, um, and so she had you lot to deal with and obviously back then postnatal depression wasn't recognised, you know. And so she had, you know, her mental health fell apart and she's had to work very, very hard over the years to, you know. And her and my dad they've been together, oh God, I think they've been married this next month. I think they've been married 43 years and together 45. You know she's known my dad much longer than she knew her own parents. All right, he's very much. He is her safety net, he is her spine.
Speaker 2:You know and I'm not saying their marriage has always been perfect or whatnot that every marriage has its difficulties, but they've really stuck together. You know they very much are the yin and yang for each other and you know she had incredible difficulties we you know, being a young parent losing both of her parents, and that had an impact on us as children, not through any fault of her own, but it does impact on the children. And I think as she's gone through life, she's constantly been told that she's got X, y and Z wrong with her. And then actually I think she had her own light bulb moment and I think I'd always sort of sat silently and thought I know where I get mine from. I can, you know, I can see the apple doesn't fall far from that tree?
Speaker 2:Oh God, no, and I could really see, but I thought, you know, with my mum again I think with many sometimes they have to come to their of said, you know, late last year, sort of middle part of last year, that she was sort of more inclined to think that she was autistic and I was like you don't need to justify this to me, mum, I diagnosed you a long time ago. It's fine, but again, you know, for her it's validation, wanting to know, and so you know my dad supported her, you know, to go down the route of. You know she has a lot of support from professionals anyway because of all the mental health challenges that she's had. But actually she has now received a formal diagnosis of autism.
Speaker 1:And that was possible to do even though her parents had passed, because my dad's known her so long.
Speaker 2:My dad's known her for such a huge, huge amount of her life. My dad's known her for over three quarters of her life from a very young age. So they were, they were very comfortable to go on that information, um, and I think, given this has to be hugely validating for her, I think but she.
Speaker 2:So I think you know, and obviously I think what helps support the diagnosis process for her is because she's had so much support from medical professionals for so many years and you've only got to look at the pattern of that to say, actually this is somebody who is neurodivergent, right? Um, yeah, and she, she struggled when she first got the diagnosis. Um, I think, and I said to her give yourself time to grieve and give yourself time to process. And I think because she had had, she said, her biggest thing was her whole life. She had been told that she was broken and she felt very sad that actually, at the age of early 60s, she's now understanding that she was never broken and that's you know. And she thinks again, you can ruminate. And I said to her you can ruminate on things, right, but you can't change what's happened. You know, because she was, you know she would ruminate on the fact that actually, had I have known, you know, everyone I've known this years ago, I wouldn't have had to have taken all the medication that I've had or had to have spent all this time being told that there's something wrong with me or I'm this and that I'm the problem.
Speaker 2:Where actually had she had those intimate. You know, from the off she's like, she's like my life could have been so very different. You know, I could have, I could have achieved, and her words were I could have achieved so much more. And I was like but you have achieved the fact that you've managed to cope with life to the level that you have and raise three children, you know, have your grandchildren, you've got a solid marriage of spanning over four decades. They're achievements, you know, right.
Speaker 2:So I think, but she just needed that process in time and I think now she's very much again, she'll be kinder to herself, you know, um, so yeah, it's. And I think again, this is why we always sit there and we say this is why you know, we look for that. Early intervention is key, you know I, I through doing work that I do and through for people that you know from a personal perspective as well, there are a lot of undiagnosed neurodivergent people from my generation that are significantly suffering with their mental health, which has led to addiction issues and problems that actually they could have been not happy.
Speaker 2:You know that could have been prevented, yeah, could have been supported and prevented Because you know, we know, you know, we, when we look at sort of statistics of um people who are battling addiction, that it's a very high statistic of they were either undiagnosed and now diagnosed, neurodivergent or still undiagnosed. And it's it's through that and understanding that, because you know ADHD, we know as an ADHD and that's predominantly with ADHD, right. Because you know adhd, we know as an adhd and that's predominantly with adhd, right? We know an adhd brain doesn't make dopamine. So it searches for ways to make that dopamine.
Speaker 2:And if you're an adhd person, undiagnosed, that actually has had the the positive opportunities to find that for a positive outlet, whether that's exercise or things like that thing, that's great because you're naturally creating that dopamine that your brain hasn't saw. If you haven't had that support or, you know, got into the wrong crowd of a young age, you're impressionable and stuff, and you find recreational drugs and you get that dopamine hit and that dopamine hit allows you to feel that little bit of normality for a while. That's why you go back to it. So you know, and and that's, and again, that's why we look to to have this awareness. You know, and it's not a trend and it infuriates me when people say, oh, it's just a trend. It's not trendy to be neurodivergent. You know, I often say walk in a day in our shoes and you'll know this is not a trend that any of us would choose to be part of and and it's a complete fallacy it's not over diagnosed.
Speaker 1:Women and ethnic minorities are still under diagnosed. People of older ages are still under diagnosed.
Speaker 2:It's it's a complete fallacy the thing is, what we're saying is oh, why are so many people getting diagnosed now? Well, actually, these people, it's not a case of they just turned 30 and decided to be autistic, right? I mean, come on, I mean, and that in itself is just stupidity, isn't it? And you just think, yeah, I think there was something. Someone once said that I can't remember the exact year, but Mount Everest wasn't discovered until a certain year, but it was always there, right, so it's always been there. But what's great is now is that people are talking about it more. There is that awareness, and I believe, as a human race, that we are supposed to be neurotypical and neurodivergent.
Speaker 1:Well, I mean it's 20% of the population is neurodivergent. We need neurodivergent right, that's on estimates, because we can't all be the same, otherwise that's not how we evolve. It's the same in the animal kingdom and everywhere.
Speaker 2:We need to be different because that's how we will survive and when you look at a lot of really successful people, they are neurodivergent, right, because they thought outside the box. And I'm not saying neurotypical people aren't successful, of course they are, but it's it's. It's getting rid that stigma and I think there's a place for everybody and I think the.
Speaker 2:The unfortunate thing is, the world was designed, developed and designed to fit the larger percentage neurotype Right and that is why, and I always say, I'm not disabled by my autism, I'm disabled by my environment.
Speaker 1:And I would even argue that neurotypical people are. Our society needs to change. I'm disabled by my environment and I would even argue that neurotypical people, our society needs to change. I know a lot of neurotypical children that aren't happy in school but they are able to survive it. You know, there's been a book that you know, the Canary and the Mind. So neurodiverse children are saying, hey, this isn't working. I don't think it's working that well for neurotypical children's. Corporate jobs, the rat race. It's not working well for neurotypical people either. It is. You know there's, there's a change that needs to happen. You know, and I think the neurodiverse children and adults of this world are the first ones kind of breaking against that wall, but others will benefit as well, absolutely you know it's quite often when I talk about um jack's school to even parents who have neurotypical children, they're like every school should be like this.
Speaker 2:You know they do the national curriculum but alongside that they do vocational opportunities, they do life skills. You know they really work on that mental well-being Because the ultimate thing is a stressed, anxious child, whether they are neurotypical or neurodivergent, will not learn if they're stressed or anxious. And it's like it's not a one size fits all, you know. And there are children out there who are neurotypical but are not academic, okay. And so actually if we offered two opportunities within the education system, and the trouble is right, so again you've got a neurotypical child that is not academically able, right, so they really struggle at school and they've spent their whole life being told they are not good enough because they're not academically able like the rest of the peers. And whether you're neurotypical or neurodivergent, that's what you grow up believing I'm not good enough because I can't do this work. And that's when they. Then we get loads of mental health conditions and problems and low self-worth.
Speaker 2:If we had an education system that was set up to say, ok, we've identified that you're not academic, that's fine, because we're probably going to find something that you're great at vocationally and we'll focus on that. You know, for me as a parent, if I had a teacher come to me and say your child's brilliant at maths but really struggles in English, I'm not going to get a tutor for English. I'm going to get a tutor for maths because I'm going to focus on their strengths, because that's where they will excel and that's where they will, you know, and that's where they will thrive, because they will enjoy that tuition, they will thrive at it and they will believe in themselves and it will grow their self worth. If I go and employ a tutor for English, which they hate, which they're not processing, they're not engaging in, all I'm doing is telling them you are not good enough and you need to do better, and I'm not doing that. I think we need to focus on our children's strengths and that's-.
Speaker 1:I agree and I think you know I mean, as you can hear from my accent, although I was used to be educated in England and then went to America. I'm so happy that I didn't spend my high school years in England because I would have failed my GCSEs, English GCSEs I can't spell, I'm dyslexic, I absolutely cannot spell. But the doors that are shut because my daughter's coming to this age now and I have friends also who still, If you don't pass your math GCSEs and English GCSEs in this country, you can't go on to doing film programs, you can't go on to doing theater programs, you can't become a hairdresser. You can't, you can't, you can't. Why do you need math and English for those things?
Speaker 2:I know, I know, I never forget once being in a maths lesson. So we're going back. Oh God, I left school, secondary school, 2001. So we're going back in the 90s. Yeah, I'm at secondary school and obviously I'm in the bottom set of maths. Of course I am right. And my son, amazing at maths, does not get that from me. Right, I can do my basics, my adding up, my takeaways and a few times tables, right, and that's about as good as we're going to get. And I just couldn't get it. And I remember my maths teacher being so irate with me that I couldn't get what he was telling me. And my self-worth is now on the floor, right, because they do it in front of the whole class as well.
Speaker 2:right, so you're sitting there thinking not only am I in bottom set, I can't even get what's in bottom set. And I remember him saying to me if you think you can walk around with a calculator in your pocket, you're you know you're mistaken. Wow, who's laughing now? Because we're walking around with a calculator in our pocket? And thank God, for that is what I'm going to say, because, yeah, I'm just like you know. And again it goes back to that let's teach children what they need to know. Right, talking to somebody yesterday and we've talked about algebra, okay, if they want to go and do that and that's kind of like their special thing and they want to hyper focus in that, great, go and do that. But do we really need to teach that as a collective? No, right, go and teach your child how to do a tax return, instead things that or balance the budget or or go shopping on a budget.
Speaker 2:You know things that are going to be relevant to having or use money. Yeah, and being confident with that independence, I mean.
Speaker 2:I just, yeah, you know we're seeing a lot at the moment, aren't we? With the new government, and you know the education thing and you see a little snippet of positivity. And then they come and bring something out like every child needs to be attending school. Parents have got a casual approach to it. Get in the bin, like literally look at the bigger picture here, like please, it's insulting to think you know. And the funniest thing is, education is compulsory, not school. You know there are children that and I know you know children that will learn regardless of their capabilities or labels. Right, they all learn differently and a lot of children will actually learn far better out of a classroom environment.
Speaker 1:I think that's a fundamental problem. It's just like looking at kids' behaviors and not understanding what's going underneath. We're looking at attendance at school and not, and looking at the children as the problem instead of the school as the problem. And it's education I mean we're just missing the government is missing. Problem instead of the school is the problem and it's education. I mean, we're just missing the government is missing it, you know, but we're screaming at the top of our lungs this is the problem.
Speaker 2:You know it's a one-size-fits-all and that does not work. You need to reform, but do you know what I think it is? They can't be asked for the big job that it's going to be. You know that I would not. You know that's not going to be an easy task to reform an education system that's been in place for hundreds of years, right.
Speaker 1:I thought the NHS was the worst system, and I shouldn't say the worst system, because I know the NHS is wonderful and compared to America it is wonderful, but there's a lot of problems within the NHS and when I worked there I was like how can we affect change? And it's so difficult. And then I met the education system. I'm like, wow, there's something actually worse off than our health system, you know.
Speaker 2:But they both need major reform and you know, there's just got to be some point where we just say we've got to do it, We've got to rip it up and we've got to start again. It's not just for the benefit of neurodivergent children, right? No, no, absolutely not All children.
Speaker 1:I look at the mental health, mental wellbeing statistics of children nowadays. You know how many kids are reporting with a mental health condition. It's in the 200,000. You know it's frightening, it's crazy. Anyway, we digress and we've been talking for an hour.
Speaker 2:Amy, if you can believe it. I know I know you know what. I could talk to you all day, but I do have to go and work now as well.
Speaker 1:Yes, exactly as have to go and work now as well as you? Yes, exactly as do I. So could we wrap it up? I love to ask my guests for three top tips that listeners can put in their back pockets and take away with them. What would be your three top tips?
Speaker 2:So, first one you are the expert on your child and don't be told otherwise. And I think, second one lean on your community Always, you know. Do your research. Knowledge is power as well. Do your research, know your rights as a parent, you know, particularly children with special educational needs. And I think the third one is take time for you and be kind to yourself, because this is not an easy journey. It doesn't come with a textbook and even if it did, it wouldn't be right. Ok, because every child is different. So I just think.
Speaker 2:And also, don't always just set yourself small hurdles when you're constantly looking ahead at the big picture. That is so overwhelming. So I often say right, you know, if you're going through like this, just as a hypothetical example, you're going through the education system, your child's got special educational needs and you want to secure an EHCP for them. Right, don't just look at each hurdle. So look at getting the assessment done, look at getting the plan issued, then look at making sure that plan is compliant for your child's needs and then let's look at the right setting for them. If you're looking at it all as a whole, you're going to be so overwhelmed during that. So I always say break things down and write things down. I always find that helps too. So, yeah, those are the things I would say as well. You know, I think that the biggest thing for me is you are the expert on your child, but also be kind to yourself and look after yourself in the process, because it's a rollercoaster of a ride.
Speaker 1:Yeah, and you need your stamina, and I will include your link to the Spectrum Send Advocate, which is is is access to you so people can reach out to you as well. You can also follow you on Instagram at NeuroSpice, and I'll have those details as well. You have not that you need any more followers. I know you're uh, everyone's welcome.
Speaker 2:Everyone's welcome. Right, everyone's welcome. But I will say there's only one me, okay.
Speaker 1:But it's been a pleasure to have you on the podcast today and you know. Thank you for being so open and honest and I know your story is going to resonate with a lot of people who listen to our podcast, so thank you.
Speaker 2:Thank you for your time, appreciate it. Speak soon, take care.
Speaker 1:Thank you for listening. Send Parenting Tribe If you haven't already, please click on the link in the show notes to join us in the private Send Parenting what's Up community. It's been wonderful to be able to communicate with everyone in the community and for us to join together to help each other to navigate challenges and to also celebrate successes. Wishing you and your family a really good week ahead, thank you.