Episode 69
When the road ahead seems shrouded in uncertainty, it's the stories of those who've walked it before us that shed the most light. This week we are joined by Esther Freeman, the visionary behind the SEND Parent Survival Guide, as we traverse the terrain of raising children with SEND. Esther's candid account of her own trials and victories offers a map for parents in the thick of similar struggles – a guide to finding balance between caring for their child and themselves. Through the guide's three pillars, we illuminate tools and strategies that can transform the chaos into a journey of growth and empowerment, underlining the profound importance of self-care and mental health in creating a nurturing family environment.
Join us as we uncover the strength in community, the necessity for boundaries, and the collective knowledge that lights the path for parents guiding their children with SEND.
Click here for link to The SEND Parents Survival Guide
Click here for auto generated Transcript
www.sendparenting.com
Episode 69
When the road ahead seems shrouded in uncertainty, it's the stories of those who've walked it before us that shed the most light. This week we are joined by Esther Freeman, the visionary behind the SEND Parent Survival Guide, as we traverse the terrain of raising children with SEND. Esther's candid account of her own trials and victories offers a map for parents in the thick of similar struggles – a guide to finding balance between caring for their child and themselves. Through the guide's three pillars, we illuminate tools and strategies that can transform the chaos into a journey of growth and empowerment, underlining the profound importance of self-care and mental health in creating a nurturing family environment.
Join us as we uncover the strength in community, the necessity for boundaries, and the collective knowledge that lights the path for parents guiding their children with SEND.
Click here for link to The SEND Parents Survival Guide
Click here for auto generated Transcript
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.
Dr Kessel:In this episode we will be talking with Esther Freeman, who's developed the Send Parent Survival Guide, which helps parents who are pre-diagnosis or newly diagnosed with their send children. She gives practical solutions that can be implemented in the here and now. Her DIY approach is incredibly useful in these times of long waiting lists and barriers to getting support. So welcome, esther. It is a pleasure to have you on the SEND Parenting Podcast. You have developed a SEND survival guide consisting of three pillars to help parents who might be at the start of their journey, or waiting for an assessment, or perhaps newly diagnosed and just feeling lost in the whole confusion of it all. Can you tell me a little bit about what started you or motivated you to create the Survival?
Ester Freeman:Guide. Well, I am a parent of a child with complex needs and disabilities and I have been on this journey for about 10 years and when I started off it was just hellish, really, like it's hard to kind of put it all into words, but you know, I had a kind of bit of a breakdown, I suppose, and my daughter's mental health was on the ground, and we were dealing with violence, we were dealing with aggression, and it wasn't just like the terrible twos or something. It was like violent and aggressive meltdowns that might go on for half an hour and I'd have like five or six of these every single day and I was just crying out for help. I was saying this isn't normal, I don't believe.
Ester Freeman:And it was hard because I was a first time parent and I was sort of saying to the professionals supporting me I don't think this is normal, like I'm not, I can't cope and I think there's something going on with her development. Her development doesn't seem right either, and I just felt I was constantly fogged off and there was a sort of there wasn't direct parent blaming, but there was this undercurrent of that that you know, really it's you. You're losing your mind and if you just pulled yourself together, you, everything would be all right, and I was losing my mind. But there was a reason I was losing my mind, and it wasn't just because I'm emotionally vulnerable.
Ester Freeman:It was because I was dealing with this. I was walking on eggshells around my daughter every day, and when we got to school, and you weren't being believed.
Ester Freeman:it sounds like, and when we got to school, it got even worse and the school weren't very supportive. And then I decided to cut a long story short. I decided to move her from a different school and I was trying to think where to move her and I remembered that a kind of I guess I would call her an acquaintance at that point had gone through something similar with her daughter, and so I reached out to her and I just I'll never forget the message I got back was just like why don't you come around for a cuppa? And that cup of tea changed my life. It really did, and I'm now, as I said, 10 years into this journey. Things are much calmer at home. You know, we still have our issues. She's still a child who needs a lot of. She has a lot of complex, needs a lot of support.
Dr Kessel:but we're in such a better place and what I want to do now is basically give people that proverbial cup of tea for others who are kind of starting on their journey, cause I remember how hard it was for me, so that's a you know, it's great to hear that you, you've come out the other end and it's a, it's a common, a common loveliness that I find about moms that I talk to, that um wanting to give back and wanting to help other um people going through the the. The journey is really important because it is. It is so hard and it is so um, soul destroying to a degree, um, so, uh, it's wonderful. So you've created this, this survival guide. Um, let's, let's dig into that a little bit, cause you've got three pillars. Take me through each of the pillars, yeah, and how it works.
Ester Freeman:A little bit more context. I think also over the last 10 years things have got even worse from when I was starting out. Where you know, the NHS is just completely on its knees. People are waiting up to two years for a diagnosis about the same if you want to go get an appointment right even longer, I think now and so people are going.
Ester Freeman:You know, what am I supposed to do like for the next two years for my kid, and kind of what I want to say with my three pillars is there's actually so much that you can do both in relationship with your child and I'll explain that a bit through the pillars and in relationship with your community. So my three pillars are the first one is you. You have to be looking after your mental health. It's kind of what you hear when you get on a plane you have to put your mask on first. So I and I make that the first pillar because you, if you are not calm, your child is not calm either, because stress is contagious and I don't mean to say that in the way that you know. Like I felt I was being parent-plagued. I don't want to put it into that framing.
Dr Kessel:No, but it is. There is and you know it completely resonates with me because I mean we had an episode last night where it wasn't one of my best mommy moments, when I was really stressed out and you know it feeds off each other and I think you know it's really hard because your child is super difficult. You have to stay calm and sometimes it's hard to do and you mess up. So there's also a forgiveness of yourself as well when, when you're unable to, and you know you may be neurodiverse yourself. So there's there's lots of layering there.
Dr Kessel:But the the golden standard, or where you want to get to is is to is at a place where you can be that calm, self-regulated individual and I love. On another podcast they said if you get it right 30% of the time, I strive for more than 30% of the time, but I at least then give myself a get out of jail card when, like last night, we both escalated and exploded. But then you can actually take that back and learn from it and we can sit down and say, look, mommy has the same issues as you we, you know, and get to a better place, but you know it does the more you can, as you say regulate yourself and be not stressed, the better it is, but not to put guilt on yourself if you do slip up and I also think that working on yourself is something that never really ends.
Ester Freeman:You know you need to be constantly doing it because you are under so much stress all the time. So I also have had I've had a very difficult week. I'm currently going through tribunal and also just been dealing with secondary school placements and I was in tears yesterday because of the way that the local authority and people were messing me about and you know I had to. Before I picked my daughter up, I said, right, I need to get myself together, like this has been a horrible day and now I'm gonna work on myself. So when I go and pick her up, I'm not just passing all that stress onto her, because stress is contagious. We know from studies of mothers and infants and young children that the stress levels in a mother are replicated in the child. So I wanted to process my stress so that when I was meeting her. So it's something that never really ends because of the constant stress that we are under as parents.
Dr Kessel:So what did you do? How did you get yourself from here down to here? One of my favorite.
Ester Freeman:I have lots of go-to things that I do I journal, I meditate, I do yoga but my favorite is tapping, which I know that you've talked about on your show before. It's so amazing because it takes less than 10 minutes and us parents have no time, right? No parent has a lot of time, but parents who are caring for children of additional needs have even less time, and so that's why I love it. So I just sit down and I tap to.
Ester Freeman:If people haven't heard of it, it's a mix of the Eastern Chinese medicine traditions very ancient traditions these are and Western psychotherapy. So you tap on certain parts of your body and you recite these statements and I can feel the stress leave me within less than 10 minutes. Sometimes I have to do it a few times if it's really kind of blocks, stress, um but. But often it can be done really quickly. And I've heard of people who like go to the bathroom for 10 minutes, you know, their kids are really driving them crazy. I'm just going to the bathroom for 10 minutes, you know, and their kids are really driving them crazy. I'm just going to the bathroom and tap in the bathroom, cause you can kind of do it anywhere. I might be a bit embarrassed to do it on the bus.
Dr Kessel:For those people who haven't maybe listened to, those people haven't maybe listened to the episode that you listened to, which is episode 35 with Emma Wild Goose on in that episode there is a link to the different tapping points. So if you go to the send parenting website, where you can Google it as well, you can find where those tapping points are there, you know, around the face and the neck and whatever and you can, you can easily print off a copy of it and then empower yourself to, like you say, go and do it on yourself to get your stress levels down.
Ester Freeman:I have a guided tapping meditation video on my website as well, so people can actually sit with me. And I talk through the points and the statements. It's a very general one about stress and overwhelm. But yeah, that's a free resource on my website people can use as well.
Dr Kessel:Great, that's fantastic, because that's the beauty of EFT it's so simple. It's so simple, it's so easy and you can do it anywhere. You know. So brilliant. That's how you work on you, uh, in the you column, and how, uh, you know the importance of that. I so, I'm, I'm a firm believer in that. Um, absolutely so.
Ester Freeman:The second pillar of uh SEM. Parenting is your child child and there is so much that you can actually do in if you take a relationship first parenting strategy. So this is kind of moving away from some of these traditional parenting strategies that are all about sort of punishments and rewards and consequences and time out and this approach is relationship first. So every decision you're making is basically is this in the interest of our relationship? And I have done over the past 10 years so many parent, different parenting courses and what I've kind of done is combine those in a sort of I call it a pick and mix because I think they're all great. So I've done NVR and I know you had Sarah Fisher, who was on your show last week, who I did my original NVR training with.
Dr Kessel:That was lovely too it was really lovely, oh my goodness, fabulous.
Ester Freeman:I really I've also done the great behavior breakdown which is formulated by a guy called Brian Post in Oklahoma and that's particularly designed for children of being through the care system, but to be honest it works with all children. And then I've done other things. I've read about brain-based parenting, which is kind of understanding what's going on in the brain, and I think that's so important and so I kind of pick and mix from those and my. My daughter has had therapy but I would say most of the um I don't like the word improvements. Most of the growth that she has had, I think, has come through what we do together and actually some of the therapy like we did occupational therapy and and a lot of the improvement that was for her sensory processing difficulties and a lot of the improvements in that were basically because the OT taught me a few tricks and then I went and implemented them at home and really it's the same with a lot of these things like speech and language she had my daughter has speech and language support from about the age of two and I would meet with a speech and language therapist, a drop-in center, and she would just give me a few techniques and then I took them home and I did them and that was where the change happened.
Ester Freeman:The change doesn't particularly happen in the therapy room a lot of the time. I mean it can do. It's the repetition Using these techniques in everyday life. And actually a lot of speech and language therapists will say this now it's, you know it's. And my daughter has speech and language support at school and I said, well, you know, should she be seen a therapist weekly? And they said, well, actually, if her learning support system is doing these things with her in school every day, that's where you're going to see the change happen.
Ester Freeman:So you know, I know it's still really difficult for people to find an OT and find a speech and language, so I've started making some videos about. You know, if you want to set up your own sensory diet, if you've got like a year long wait before you can see an OT, I'd actually have a video on my channel about how you can do your own sensory diet. If you've got like a year long wait before you can see an OT, I'd actually have a video on my channel about how you can do your own sensory diet so you don't have to wait. And I also offer one-to-one coaching so that if people want to talk through strategies with me, because I just think that you know you can't get to see someone at the moment and when you can't get to see someone, then peer support.
Ester Freeman:When you can't get to see someone, then peer support is really important. And that actually brings me on my third pillar, which is community, and it's really important to have the right people around you, and some of you might be really lucky that you go into parenting with those right people around you, but I know I didn't and I know an awful lot of people who didn't. And I would say, if you have people in your life right now who are not helping, then either find new people or at least reduce your contact with them somehow, or reduce your contact with your child maybe you know you have a friend who's not saying very helpful things to meet your friend without your child when you go out for a coffee or whatever, because those people will just drag you down. What you need around you is people who get it, and they tend to be other people with parents with disabled children.
Dr Kessel:It's interesting because I talked to a mother over the weekend and she said you know, we've got this down at home now.
Dr Kessel:We know how you know and it works really well, and she's like, but when we go out, she'd been to London for an hour and then other people start looking and commenting and you're interacting with a different you know social group, and then the pressure on you as a parent to go back to maybe the old ways of parenting or you know social group, and then the pressure on you as a parent to go back to maybe the old ways of parenting, or you know you, you know the pressure, uh, then you then transmit to your child and that stress too, which goes back to the other two pillars you just talked about, becomes more predominant. So it's it. It can be really challenging, I think, for um, for parents, and I think the idea of limiting that exposure but also learning to kind of put a force field up and not be not let it touch you you know the way I like to, the way I like to say it is.
Dr Kessel:you know what. It's their problem. It's not my child's problem, it's not my problem, it's their problem. They can't deal with this. And if you do that, it kind of shifts the way you feel about it.
Ester Freeman:And I think, if you have a few stop phrases, like if you have a relative or a friend who keeps kind of making really unhelpful comments, you can have a few stop phrases which is just like thank you for your opinion, I'll bear it in mind, but I'd rather we talk about something else. And if you say I bear it in mind, you're not saying you're not going to do something, but it will. Just, you know, and you're basically putting your boundary in place, and I think boundaries are often quite important because we do have to parent our children differently and some people just won't understand that and they won't understand our child's behavior and it can just add to the stress. But, as I said, the positive part is there is a whole community of people out there who do get it. So seek them out and like, for example, I said, I'm going through tribunal at the moment and I've had a really horrible week and I feel like I've been let down by professionals on multiple angles and I've actually made a slightly radical decision to just continue my court case by myself.
Ester Freeman:And we've now set up I say we, the, the people who run our local parent carer forums, and if you don't know about parent care reformers, go online and find them out. You will probably have one locally and they're such an amazing support source of support. Um, and I asked one of the coordinators of that. I said could you set up a whatsapp group for people who are currently going through tribunal, because there are so many of us in our area because our local authority is morally bankrupt, and so we've now got this group.
Ester Freeman:Within an hour, 30 over 30 people were joined and we're now supporting each other and we can ask very practical questions. Okay, where's this form that I have to fill in and do it like I was this week. I was saying do I need witnesses? I've got all this other evidence and people saying well, I've been through tribunal twice and I would say I think you're fine without you know, and it's just getting that kind of lived experience from people. Um, and you know, people are out there gonna help yeah, that shared knowledge.
Dr Kessel:Yeah, so yeah there are the three pillars.
Dr Kessel:Yeah, well, that's great and it's fantastic in terms of you know it's working within a broken system and kind of it's a DIY I think you've used that word with me before approach to what you can do in the here and now, because sometimes we get so focused on that end game and that end game can take years to get to and meanwhile our child is suffering, we're suffering, and it's so important. They change so much In months. They change Years, they change, so we don't really have time to wait for the system to be fixed, sadly, or to get the elusive EHCP and then to find out it actually isn't the golden egg that you thought it was and to find the right school. There's a lot of expectation that if I get to this point and if I fight this much, this is going to happen and everything's going to be okay, and actually the reality is not the case. You know it's a journey.
Ester Freeman:Yeah, I think that, particularly around diagnosis, I actually feel that very strongly and I understand diagnosis is important for people, but I think people have this expectation when I get the diagnosis, all this support is going to suddenly come flooding in and everything's going to be okay. And then they get this horrible wake-up call when, when that doesn't happen and and I'm also for people I'm saying I'm here for people at the start of their journey, but also the people who've just coming out of diagnosis and suddenly just finding themselves by themselves and it's just like, oh well, is that it Like? And yeah, I'm afraid it is like there isn't. Diagnosis is also not the golden goose and unfortunately, it is just a long fight, but a rewarding one, I should say.
Dr Kessel:Well, you know, the best thing you can, you know, empower yourself with you know. Back to the DIY kind of tool thing is, and it sounds like the journey you've been on is to take on board all that knowledge. It's a journey I've been on too to understand what's going on with your child, what's going to work with your child, and that, you know, is going to vary. It's very personalized. But the more you learn and the more you talk to other parents, the more you read books, the more you listen to podcasts, the more you educate yourself, you start to grow and change and it changes. You get more in control then as well. So you have more, less stress because when you're in, the system is broken and, as you've described for this, the week that you've had, it's out of your control. So you feel that that increases your stress hormones, increases your feeling of helplessness, whereas you can, in the DIY approach and the what you can do yourself approach, you can empower yourself and I think that that's really important for parents to realize.
Ester Freeman:Yeah, I, I mean, I was literally on the phone to my friend yesterday morning going I think these people are just trying to break me, because that's what it felt, like they were just throwing one thing after another and I was just like I can't take any more of this. And, and having that go-to person, big love to my friend. I won't name check her because I don't want to embarrass her, but like she's amazing and she is the person that I go to and she gets it. And you know, I just needed 20 minutes on the phone with her and she calmed me down and she said right, you need to do this. And you know, sometimes you need that very practical.
Ester Freeman:I did in this instance. Or sometimes you just need someone to listen to you, um, and you know, yeah, she, I was able to calm down with her support. So that's my third pillar. I was then able to do some tapping and come, you know, process that and you know, by the time I'd gone to pick up my kid from school, I was kind of okay again, you know, um, so yeah, it does. It is kind of working out how you fight your way through this very broken system yeah, and, and, and survive it.
Dr Kessel:You know, and, and, and thrive in it. You know, um, and that's that's the real challenge, because it is death by a thousand knives or you know they are trying to break you and you know, unfortunately, that's the integral, commonest part of our shared journeys with you and all the listeners as well, is that you know, you're not alone.
Dr Kessel:Most people will describe it that way. I haven't heard of anyone, I've never heard of a story of oh, it was so easy to get my child the right education. It was so easy to get my child what they needed.
Ester Freeman:I mean what I have heard is from people who now have grown up children, saying I can't believe how much harder it's got. It was easier for us. I don't think it was easy for them, but it was easier than it is now. So it is definitely getting worse and obviously we are seeing councils around the country going bankrupt and there seems to be a bit of a culture now of sort of blaming special educational needs because so many of them are over budget, and so there's this kind of culture and atmosphere at the moment of sort of blaming the parents of disabled children, which all does make it make it harder.
Ester Freeman:And so I just think, you know, I have had some really good professionals working with me, but the people who have really made the difference are the other parents, and I just believe passionately in this peer-to-peer support, because that speech therapist or that educational psychologist may have a row of certificates on their wall, but they haven't. Well, some of them may have disabled children but they haven't lived day in, day out with your child and you have um and you know other parents have also lived and walked that journey and there is just something about that that's very special and I think, particularly at the moment, we really have to maximize the use of that, because there isn't a lot else. What's there involves either spending lots of money or very long waiting times.
Dr Kessel:Yeah, exactly. Well, thank you for sharing with us your survival guide. It's been I think it'll, you know resonate with a lot of listeners. If you could give three top tips for our listeners to take away in their back pockets, what would be your three top tips? That aren't your columns, so you're going to have to think of something a little bit different.
Ester Freeman:Yeah, so what I was thinking, because you asked me this before and I've been thinking about it and I was thinking, if I was to go back 10 years and talk to myself, what would I tell myself? And so I was thinking I mean, these do touch on my pillism.
Ester Freeman:But the first thing, I think it's hard not to to the first thing I would say is trust your gut instinct, even if this is the first time that you are parented and you're very new to it. If you feel something is wrong, then go with that because, as I said before, you may not be an expert in child development, you may not be an expert in speech development. You may not be an expert in child development. You may not be an expert in speech development, you may not be an educational psychologist, but you are the expert in your child. You live with them day in and day out. You are seeing them around other children, you know them better than everyone else and I have to say I have never met so the professionals and I think this comes from a good place. They seem to want to calm you and to get you not to worry and just say you know, all new parents worry, it's very normal and they're still within a normal frame of development. But I have to say I have never met a parent who, with a child in a school age or teen or whatever, who said to me you know what was so funny when my child was younger? I thought they were autistic and how wrong I was. I have never come across that everyone who thought there was something wrong it now has a diagnosis or at least is on a pathway to a diagnosis. What I have come is and I don't want to say this in any blaming way because I think it is very hard I've come across people whose children have suddenly had massive breakdowns in their teenage years, particularly girls, because girls tend to mask their symptoms, they tend to blend in more and they hit teenage and the hormones go crazy and then suddenly all these symptoms come out and they get this later stage diagnosis. And so I would say, if you feel something is wrong, trust that instinct. The other thing I would say is that I know parents, who they. I know this one parent and her first child. She felt something was very wrong and she was finding it very hard to get people to take her seriously and she kept saying really, I just I don't know, it just doesn't seem right. And eventually it became obvious and her daughter has global developmental delays and, I think, maybe some other diagnosis now. And then she said when she had a second child, who is a typically developing child, she said it was so obvious, it was just so different from that first experience. And I think it is easy if you've had one child and then your second child may be neurodivergent or disabled in some way. It is hard when it's your first child to trust your gut instinct and keep pushing, even if they say stop worrying.
Ester Freeman:So the second piece of advice and I know this is one of my pillars and I think lots of other people have said it, but it's just so important is to look after yourself. And I know time is limited and what I would say is you don't ignore these people on wellbeing gurus on Instagram. You don't have to be up at six o'clock jogging every morning. You don't have to be doing an hour of yoga before breakfast, but find the little ways that you can look after yourself. For example, I do five minutes of yoga before my daughter gets up. Five minutes feels manageable and it makes a difference. And you know I also find other ways to move my body.
Ester Freeman:I know I know some people will say you know, don't worry about whether you've got a clean house or not, but I actually do set aside a time each week to clean my house because it's actually quite good cardiovascular activity, at least the way I clean it is. I have a sweat going on by the time I finish cleaning. So if you can combine things like that as well, it's like, okay, I can't really get out to do any jogging or whatever, but maybe I could just clean the house really quickly. So find things that will work for you. Have a routine. I have, like every Sunday afternoon I'll do a bit of journaling and I try and find time when I can in the morning to do a bit of meditation. That's a bit harder because it does take a little bit more time and I know people have sleepless children and that can be hard. But do look after you. Even if it's just a small thing like five minutes yoga, 10 minutes tapping, you do need to prioritize that.
Ester Freeman:And then the final thing is about just knowing who your people are and not wasting your time with people who aren't being supportive, having those boundaries around those people, because you just don't need that toxic energy around you. You need people around you who are going to support you. And when and maybe you don't have those people yet, I didn't I had to go out and actively find them. And if you're not ready to do that yet, because I know some people, it's a bit of a shock when you get the diagnosis and things. If you don't feel ready to do that, listen to podcasts like this. Um, get onto facebook forums. Ease your way in gently, if that's the way that you need to do it. Um, I mean, I have to say, a lot of my support and connections are online, because my friends all have children with disabilities and we're all super busy. It's very difficult to leave the house sometimes, but we support each other online and I think that there's a huge value in that. So those are my three tips.
Dr Kessel:Those are fantastic and you know. All of them great advice and words to live by. You know and you know realizing that you're not alone as well, and that you know you know and you know realizing that you're not alone as well, and that you know you can. You can do this, you can do it. You know you really can. So thank you so much for coming on the Send Parenting Podcast. Thank you for listening Send Parenting Tribe. I have loved all the comments and conversations on social media, particularly vocal on TikTok and on Instagram at Send Parenting Podcast. I would love to hear more from you. What topics you would like to explore more on this podcast. Please DM me with your thoughts and ideas so we can continue learning and growing together. Wishing you and your family a great week ahead your thoughts and ideas so we can continue learning and growing together. Wishing you and your family a great week ahead.