EP 62: Being Failed by the System and Advocacy with Chrissa Wadlow

Please excuse any error in this auto-generated transcript

Dr Olivia KesselHost00:05

Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade. In this two part episode airing this week and next, we'll be speaking with Krissa Wadlow, who will share with us in part her harrowing journey getting the right support for her daughter in a broken system. She will also share with us how this inspired her to found sunshine, support to really help other parents in their journey through advocacy and empowerment.

01:09

This episode contains a discussion around mental health, suicide and child protection that may be upsetting or triggering. So, listeners, discretion is advised. So welcome, krissa, to the Send Parenting Podcast. It is such a pleasure to have you here today and we're going to be recording a two part series. So in today's episodes we're going to really look at unpicking the parent friendly journey or the not so parent friendly journey with the local authority as you fight for your rights as a send parent to get your educational needs met of your child. And then next week we'll go into unpicking attendance and avoidance and understanding kind of the legal aspects of that.

01:53

So I'm looking forward to our two sessions. And you know you are another warrior mom and I've had the pleasure of meeting lots of them on this podcast. But you've really you fought for your own children and then you've taken that passion and you've created the sunshine support which supports other parents who are going through that journey. So we'll touch upon that as well. But to start off, could you share with us your journey and how this all began for you?

Chrissa WadlowGuest02:21

Of course, yeah. So I'm a mummiful and my eldest child. We noticed that first of all. I think the first things that we ever sort of thought was strange were that her reports about school, her actual reports to us, were very different to what the teachers were saying, what was happening at school. And it was alarming us because she was describing to us that she was really sad, she had no friends. She didn't quite understand what was going on, but the teachers were reporting. She's the center of attention, she loves being part of a big group, she's got some really valuable friends. We're not noticing that. She's upset, she's always smiling, her grades were out of this world, so they weren't worried about that. And so there was this fractured well, it began as a very different story being fed to us.

Dr Olivia KesselHost03:16

It's obviously a disconnect between a complete disconnect.

Chrissa WadlowGuest03:20

Completely and it ended up being quite a fractured relationship between us and school. Because what started as her saying one thing, them saying another and by this point we didn't have a diagnosis she would have been about age eight, something like that. So, just going into junior school, what started as this her saying this is what's happening and then saying no, no, no, this is what's happening, you don't have to worry that, this is what's happening. It started like that, then ended up her having huge amounts of school avoidance, really panicking. You know, this is sort of extreme anxiety about school and I really didn't have a clue what I was looking at. I just knew that as a mum, the duty was on me to get my child into school. So I witnessed the teachers dragging her in, I've witnessed the teachers allowing her to go in her pajamas, which really alarmed her and now I can see why. And she developed glandular fever.

04:21

She developed really bad anxiety and mental health difficulties and sort of by the time she got to secondary school it really started to fall apart, to the point where her attendance started at the 100% for maybe the first few weeks and then dropped off almost like 10% every term until the minute that we got into year eight, she was not really attending at all. In year seven we had I'd had another baby at this point and then I'd had twins, so she was then a sibling. You know of a sibling group of four, and everybody kept saying, oh, she'll be jealous, she's upset that she has siblings. And you know, as a mum you're sort of thinking, no, that's not it, that she's not jealous, that's not what I'm seeing here, it's not jealousy. Anyway, cut a very long diagnostic story short. Somebody alluded to us she does sound like she might be autistic.

Dr Olivia KesselHost05:23

Who is it that picked up on that? It was a school nurse.

Chrissa WadlowGuest05:26

Okay, and I said no, me being very naive back then. Fortunately I've got a lot more knowledge now. I said no, she can make eye contact Red flag. She's really sociable, she can navigate a conversation. In fact, she's almost quite manipulative in the way that she works a room in order to gain control out of that room so that she doesn't feel anxious.

05:51

And I was recognizing those signs and they said, yeah, that could be, that's a girl with autism, that is an autistic female profile. And so my husband and I were sort of like baffled right, we've got to immerse ourselves in this world of girls with autism. So we went out and we bought all these books and started reading up on things, as you do, and then discovered it wasn't as straightforward of just getting a diagnosis. So we ended up having to pay for a private assessment to be done and, lo and behold, she's autistic. And so it was really.

06:26

You know, to get to age 12 and not have known this baffled me. I felt like an enormous failure. I felt like how could I have gone 12 years and not recognize these signs? And then I started to feel that pressure from the outside, where family members, you know, people who knew us not necessarily friends, because friends have always been brilliant. But certain people were starting to say Are you sure you're not making this up, because what we see is something different. We can't see what you see. So you start to feel quite alienated and very alone. And, strangely enough, my best friend always says to me you are an island, you, just you sit on your highland, it's just you. You know that you can do it by yourself, but you sit and you explore every emotion on your own. And she said and I think you're so incredibly strong, but you don't have to do that. But she always describes it to anybody Chris is the island.

Dr Olivia KesselHost07:26

Which is the only place to be an island. You know what I mean it's. You know it's. You don't want to be alone on an island. I think you know that's a form of hell.

Chrissa WadlowGuest07:35

Yes, absolutely Particularly when you're trying to navigate this blooming system that is not fit for purpose. And I think that I, looking back, wasted a lot of energy in those early stages just shouting at anybody who'd listen why are you not doing stuff? The law says this, the law says that. Not really understanding the law, and I messed. I just feel like I messed it all up because I was so hot headed but so exhausted and so hurt that my precious little girl was being destroyed by this broken system and having doors closed on, you know, slammed in our faces.

08:13

I remember going to see a community pediatrician and my daughter's mixed race and the. I said to the community pediatrician she's just so sad all the time. I just want to help her feel happy. And I said she's also really worried that she has what she calls an RBF face, so a resting face I won't say the word when she just looks like she's going to punch somebody all the time. And she said she keeps getting into trouble for it with other girls. You know where they sort of say what are you looking at? And she said, mom, I can't control my face, I'm going to get into a fight and she's not a fighter, you know, she's just a beautiful soul, and so so I said all of this to the community pediatrician and she said well, she's mixed race, that's how they all look, and I was mortified.

Dr Olivia KesselHost09:00

I burst into tears.

Chrissa WadlowGuest09:01

Goodness, as a white woman, I was not prepared for that, and then that made me feel even more of a failure, because I thought how could you have navigated this many years of being her mum with such a white-washed, washed, white-privileged approach to raising a black child? And so there was a lot of learning, a lot of. I sat in a lot of uncomfort in order to learn which I know that that is the best place that you're going to learn is when you're sitting in that sort of difficult, horrible feeling where you're like, oh God, I've done something wrong. This is on me. You hold that mirror up and you think, no, I've got to get better at this. And we had a hell of a time. And we ended up. We applied for an EHCP, got knocked back, knocked back, knocked back five times until I instructed a solicitor who did exactly the same as what I did, but had his logo in the top corner and boom, it all went through very, very quickly. Of course, now I'm looking at it he referred to the law. He made it a robust request. It wasn't just a very emotional mum going help me, it was him actually saying these are her needs, this is the law, this is what your duties are. The EHCP was not worth the paper it was written on and it took about 65 weeks, which we should take 20. So they were well overdue and we had to keep threatening them with judicial review and eventually, when we got the plan, it was not fit for purpose whatsoever.

10:35

Meanwhile, of course, she was getting no support. She was out of school. Nobody was providing her with an education. I now know that there were laws that I could have exercised the right to in order to get her an education, because that's what I do now for a living, but at the time I didn't, and so she went without and she absolutely almost wasted away.

10:56

Her brain was not being used. She was becoming more and more sensitive to the environment around her. She was struggling to leave the house, she was struggling to leave her bedroom. She then started to become very violent and aggressive because just brushing her teeth was an enormous demand that she just couldn't handle. She just couldn't handle what a lot of people think of the basics, and there were lots of people around me sort of saying have you tried being firmer? Have you tried doing this? And then social workers would get involved because she was out of school, and they would say well, we think you need to do this and we don't know much about girls with autism, but have you tried? And it was just so incredibly offensive because we were living this life that was absolutely draining all of us. And there's the impact as a man where you feel totally aggrieved by what's going on in the system. Then you come home to a child who is physically attacking you and almost like a bit of a domestic terrorist in the house.

Dr Olivia KesselHost11:57

Yeah.

Chrissa WadlowGuest11:58

Yeah, and when you really take a step back and you go, this is my baby and now I feel guilty for feeling so victimized by her, because actually she is the victim in all of this and she's struggling so much and I'm going out and I'm fighting these battles and I'm getting absolutely nowhere. So, being the kind of person that I am, I kept putting my foot down with services and I kept saying, no, you will do something and my rights are this and my child's rights are that and you will do something. And do you understand this? And I brought an advocate in. There was an autism advocate who could explain the female presentation to everybody in the room.

12:40

The local senco actually was fantastic and he said you shouldn't be having to pay for us to be trained in a room. This is just ridiculous. He said I understand that. He was autistic himself, so he got it, but nobody else did. And he kept saying Mrs Wadlow is here and she's paying for all these experts to enter the room and all of you are eye-rolling them. And he kept calling the people out but they didn't like that. He was on our side and they didn't like what we were asking for.

Dr Olivia KesselHost13:07

And they started to talk to us. What were you asking? I mean, you were just asking for her to be supported, right? I mean, that's what you were. I mean how cheeky of you, you know. I mean really, how dare you.

Chrissa WadlowGuest13:19

I know, and of course I know that now I understand the law and every child has a right to an education and I know who's responsible for that. But back then I was just going this is bizarre. I've paid my taxes. Why is my child not receiving what they should receive?

Dr Olivia KesselHost13:33

You're being gaslit by the system that's supposed to actually protect and support you.

Chrissa WadlowGuest13:38

Exactly that. And we ended up then having social care saying we agree with the school, we can't see what you see, you're harming your child. And so we were like what do you mean? We're harming our child, we're actually keeping her alive. Right now she is suicidal, so we're keeping her alive. We had the ambulances turning up to the house every week trying to calm her down just so that she felt she had eyes on her. She felt so abandoned by the system. And her words at age 13,. Well, she said I'm a burden to society At 13,. That's how it made her feel, anyway, so we kept up the good fight with the EHCP. We were appealing. The contents and all of that sort of stuff In the middle of all of this social care did not like what they saw whatsoever.

14:29

They could not understand why I was asking for a bespoke education for my child. Because that is essentially what the law says the education should be tailored to your child. That's what an EHCP is. It's that very prescriptive document, that's a legally binding document that says these are your child's needs and this is how we're going to meet them. And they didn't like it at all and they started to manipulate the conversations between themselves and my daughter. Now, I wouldn't have known about these manipulations had it not been for requesting my data from the local authority, and they'd actually confessed to it all on their system. So they'd actually written down verbatim what they talked to her about and how they'd said can we have some family gossip and things like that, and I'm thinking that's nothing to do with the case. They asked a mum and dad do they have a mortgage? How much money have they got to fight the case with us? They were asking her things like this, and so we had it all documented in this data. Subject access request.

15:33

So we started to sort of say we think we need another worker for this for our child, because they're manipulating her, they're not treating her as they should. And all of a sudden we noticed them all sort of get together very tightly, all of the services, and it felt like they were colluding. They were having meetings behind our back. Anyway, fast track, because this is over the period of quite some time. They said to me we think that you are harming your child. We're going to do an assessment and see if you are harming your child, okay. So they started doing impromptu visits, which really did not make her very happy because this is her safe space and so she should be allowed peaceful enjoyment of her home. But they thought she was at risk, and so they were doing their job.

16:22

They then posted the outcome of this report through my door, and the last paragraph of the report said do not share this with the mum and dad because it will put the child at further risk. And the cover letter said here's the outcome of the report. I'm on holiday for five weeks now. So they thought that she was so highly at risk that she shouldn't have been left alone with us. But the social worker went on holiday for five weeks and nobody touched him with us, nobody checked in, we were just left. So that just shows how inept the entire system is, because do you genuinely believe she's at risk, in which case you are inept, or are you making this up, in which case you are inept. And so they then sort of sent us a letter saying we are going to put you on CP. Now I wasn't well-versed in what CP meant, so I rang my cellist.

Dr Olivia KesselHost17:15

It means cerebral palsy, which I'm not presuming. That's what it means here. What does CP mean?

Chrissa WadlowGuest17:20

Well, I thought it meant crown prosecution, so I was like whoa, it means child protection. So they put her on a child protection plan. They took us to this conference where I was not permitted to speak. It was like I was on trial. And then all these people who had never met me delivered a report that they'd never had eyes on until that morning. And they all delivered a report full of inaccuracies, and they were kicking each other on the table whenever somebody looked like they were in support of us. What they didn't realize was there were no backs on the table so we could see everybody's feet. It was really alarming and they kept pushing and pushing and pushing. Anyway, they put us on this child protection plan with no action points for improvement of parenting, because they said oh, actually you don't need to improve as a parent, it looks like she just needs help. So why are you putting on a child protection plan? Because child protection is when a parent needs to improve.

Dr Olivia KesselHost18:12

Basically, and you've been fighting with everything that you've got on your island to try and get her this. That's what you want. You've gone above and beyond to try and get her support.

Chrissa WadlowGuest18:25

Absolutely, and the EHCP process. If they just followed it, it would give her the support we didn't need to be making this into something that it wasn't. So I absolutely felt like I was having a breakdown. I just couldn't cope. They were turning up at my house. They were analyzing how clean it was, to the point where I do have a very stress-related OCD, which I'm neurodivergent, so it sort of fits my profile. Feeling very, very stressed. It meant that I ended up paying cleaners to come in three or four times a week to make sure that, if they turned up impromptu, that the house was spotless and they ended up calling it staged. So social workers were saying to me it now looks like you're staging this. And I said I've got an autistic teenager. I've got I think she was four, my next one down four-year-old and twin toddlers. I don't think I could stage anything. I can't stage a thing. But if you mean that my house is clean, yes, it is because that's a thing that I like to do, that's a thing that I like to arrange. I like to keep a clean home. They didn't like it.

19:32

It was really invasive, really, really aggressive, and we went back to a review of the child protection, and the social worker produced her report and she said I can't see what my colleagues saw. I can't see that this family should be on child protection and so maybe we should keep them on so we could see if we can trick them up. And I was thinking again, though you're taking those services away from a child that needs it. Our children don't need these services. This isn't what we're asking for.

20:04

My daughter gave a very, very powerful video for the Child Protection Conference review, and she ended up saying in the video, you're looking at the wrong people. All I want is help. Instead, I'm being interrogated by social workers as if my mum and dad are hurting me. They're not hurting me. My environment is hurting me. I need help. But you're looking in the wrong way and you're pulling this service away from the children that need you to keep them safe. And it was really powerful and it moved the entire room of professionals and they took us off child protection, and then we were dumped. It was like, yeah, you don't need any help.

Dr Olivia KesselHost20:48

Then no, no, no, no, no, no, don't go. What happened to their initial assessment that the child needs support? That didn't equate to anything.

Chrissa WadlowGuest20:57

No, Not a single piece of support was offered. And meanwhile, how is your?

Dr Olivia KesselHost21:01

daughter coping with this, I mean already she's you know what I mean, without all of the other stuff. I mean going through this with your family. I mean that's got to push you over the you know the edge.

Chrissa WadlowGuest21:13

And we were trying so hard to stay connected. But she was feeling failed by us and I think that's something that she's continued to feel it's many, many years now, and she's continued to feel that that we could have done more. I know that there's nothing more I could have done If I had the knowledge I have now, back when she was two or three. Then yes, of course. But we come to this as parents with this sort of romantic vision of oh, shall we create a mini, you and me? Yeah, let's do that. And then you sort of come to the parent thing with this romantic vision of oh, we'll grow old with raising these lovely children and we'll have fun on holidays and we'll oh, yeah, it's going to be great, and we'll get a little pet at home. You know, we have these beautiful romantic visions and then it's sort of you realize you're on the wrong road or you know it's not welcome to Holland poem, you know where. It's not that you don't like what you've been given, but you weren't expecting it and I certainly wasn't prepared.

Dr Olivia KesselHost22:13

And you did that. You're doing the best you can and in fairness, I mean Chrissie, I mean you are. You are fighting on your islands, you know where others would have you know given up, I think.

Chrissa WadlowGuest22:24

Absolutely, and I think that's what they intend to do. The services know that they're stretched and so they know if they can try and bully you and push you. And I think in one of the documents it said Chrissa Wadlow is middle class and manipulative. And I actually raised it at one of the conferences and said thank you very much for your beautiful compliments about me, and they were not expecting that. And I called me middle class. I'm from South Wales where I've grown up in the valleys in an old mining town. I am certainly not middle class. Thank you very much for that, and if I ever be a manipulative I will do whatever I can for my children. So thank you very much for noticing how tenacious I am, and they never like when you approach them with that, but sometimes you just end up snapping and you think, no, I've got to say my piece.

23:12

So anyway, we managed to get this first tribunal for the EHCP social care of sort of disappeared or taken a bit of a backseat. And my daughter's really struggling I've had to. She's now struggling with me doing work at home. I had a little office at home. She's struggling with that and she said no, work is for an office and home is for us. And she really struggled with sort of the. She likes to compartmentalize things. So I ended up I worked for myself and so I ended up going to get an office, a cheap office, just so that I could say that I'm working in an office now and it's not at home. But I had to set up an area of the office for her. She had her own sofa, her own little area with a radio and near the router so she could be on a iPad and everything else. And I must say if I hadn't worked for myself I would have lost my job, because the amount of appointments you have to go to, if you try and reschedule them, they gaslight you and say you're disengaging. If you try, if you struggle to attend one, you're disengaging, you get sent back to social care. So the whole disability is not supported, it's judged. And I think this is one of the problems that I have with the entire system is that we can still safeguard children by not judging. It's the old Walt Whitman quote be curious, not judgmental. And I think it's really important that professionals stick to that, because you can be really curious and keep a child safe without throwing your your own personal judgment on a situation.

24:47

But we were gaslit by, you know, camhs. Camhs kept saying to us we've made an appointment and you didn't turn up. And we were baffled because we have no paperwork to reflect this appointment, we had no phone call or anything else. And they kept saying we made it at the end of last time, don't you remember? And it got to a point where I said to my husband I think I'm going mad because I did not have those appointments in my diary and I keep my diary on my phone for this reason.

25:16

And so I started recording the conversations, not to use as evidence for anything but for my own sanity. And lo and behold, they did it in one of the sessions that I recorded. So it wasn't a therapeutic session, it was me coming in at the end of her therapeutic session and I recorded it. And they talk about you know right, we've had a conversation today and blah, blah, blah, blah, blah and they go through all the niceties. So we'll ping you out an appointment in the post. Is that all right, because I can't access the system? Yeah, that's fine. Then comes two or three weeks later. Krissa is disengaged again because we told her that this was the particular date and it was the date of my twins second birthday, so I know I wouldn't have agreed to it.

Dr Olivia KesselHost25:59

Or forgotten it.

Chrissa WadlowGuest26:01

No, exactly. So I said to my husband I've got the recording from the last meeting. They say and they agreed it in the last meeting. Listen to this. Lo and behold, it wasn't there. So I knew that I was being gaslit. I knew that that was happening and it made me feel more confident. Angry, of course, so angry, but so much more confident that it's not me going mad and sort of feeling traumatized by what I'm going through and losing my cognitive ability. It was actually that they were. They were faking it, they were making things up.

26:30

I then got warned by cams that my daughter kept getting admitted to hospital because she wanted to end her life. And I kept getting warned by cams Stop going down this route, they're going to come for you. They're going to come for you. We'll all have to stay on the same team. And they thought they were having these off the record conversations, but they were really damning.

26:48

So we did the first tribunal anyway and all of our professionals said my daughter needed a residential setting because this is now moving into trauma, mental health as well as being she's autistic, with ADHD, with a PDA profile and enormous amounts now of trauma and probably developmental trauma as well, because it was affecting our sensory systems and very, very embedded in her system. Because this had been going on for many, many years, we went to the tribunal. The local authority had forgotten to instruct all its professionals to come. So we waited and waited and waited. I paid eight or ten thousand pounds for all of my people to be there to defend our position and the local authority brought nobody. So they adjourned the case and I was mortified and the local authority sat there laughing and I said will you pay my costs? And they said at the end, because they wanted to see how much they could run me out of money. So we went to the next tribunal hearing where we won absolutely everything. We won every piece of content, all of our occupational therapy, speech and language therapy, mental health provision, social care provision. They said we absolutely agree, this is the sort of school that she needs, but the school that you've named is too far away.

28:08

Now a little backtrack there. I interviewed 40 schools for her. So I was a headhunter, so I'm very well versed in interviewing people. So I interviewed 40 schools over the phone, dwindled that down, did a bit more investigative work, searching in sort of Facebook groups, you know. Has anybody heard of this school. Do your children go? What are your thoughts? Doing my own research on different reports you know Offstead, cqc, that sort of thing and I dwindled it right down to one amazing looking school and I thought right, I'm going to go and visit it. I'm not going to let her know about it yet. We'll go and visit.

28:46

And my mother-in-law is a specialist educator and had her own school for autistic children. So I said please come with me because I don't know what I'm looking for. So she came with me and it was just remarkable to have her expertise with me, which many people don't have. And this school was just absolutely phenomenal. But I said to them you're only 38 weeks and I need the flexibility of it being 52, just in case you know, we're happy with the 38. But if she really starts to struggle, it would be awful if she has to fall into the NHS system on those other weeks where she's not in school.

29:20

And they said oh, did you not hear about our sister school down the road which is exactly the same as this one, but 52 weeks? No, I didn't. With all my investigative work I hadn't come across them. So I went to visit, fell in love with the place. Took my daughter. She fell in love with the place and she said, mum and this was the most powerful thing she's ever said to me Mum, everybody's so normal and I feel normal there. And I said, wow, you know, when she'd been feeling like a burden to society, she felt like an outcast, she didn't feel like she belonged anywhere and she said I feel like I have best friends there already. It feels really weird. The funny thing was that I said to her so what are they called? And she went I don't know the best friends, but she hasn't got to clear what they're called. So we went to this next tribunal, like I say, and we won absolutely everything.

30:14

But they said this school was not the one because it was too far away and it was about four hours. But it's residential, isn't it? It's not residential, so it doesn't really matter. And I kept saying to them but the only impact is on me. Local authority aren't paying me to go and visit her. Nobody's paying apart from me. It's my time, my petrol, my time out of work, my money. It's impacting me more than anyone else that she is that far away, because to her she could be 15 minutes down the road or 15 hours down the road, it doesn't matter, because she's on site at that place and she's having her needs met. Anyway, it was really disappointing because you sort of think, oh my God, the plan is perfect. It's all pointing to this school. The local authority then had five weeks to find another school that was identical to this one, but closer. I knew it didn't exist. I'd interviewed all these schools so I knew it didn't exist.

Dr Olivia KesselHost31:07

Is this just a stalling tactic? To stall it? You just wonder what their rationale is. You know, and I know you could spend hours trying to understand the local authority's rationale, but it just doesn't make any sense.

Chrissa WadlowGuest31:20

Makes no sense. They had five weeks to find a school. They didn't consult with a single school, so another five weeks went past without having any needs met whatsoever and she is deteriorating and deteriorating.

Dr Olivia KesselHost31:36

She's been excited. Now she's found a place that she likes, and then she's been let down again.

Chrissa WadlowGuest31:41

She said just take me there. She was seeing it in a very black and white fashion Just take me there, why are you listening to these people? And she'd say things to me like I thought you were a strong woman and so I'm being gaslit now by my own daughter, like, give me a break. But it was really hard and her mental health was on the floor. She was convinced that social care was drilling into her wall to remove her from her bedroom. She could hear the drilling, so she'd started to develop a very low level psychosis. She felt like they were coming through her radio.

32:17

She was describing all these different things that were so alarming to me as a parent, because I was not. I'm not skilled in that and I think that's another thing. With parents, with send parents, you quickly learn that you have to be a solicitor, a psychiatrist, a physiotherapist, an occupational therapist, a speech and language therapist. You don't have these skills. It's really tricky to navigate and I think even if you were qualified in those areas, doing that as a parent is a different kettle of fish, isn't it?

Dr Olivia KesselHost32:51

No, with my daughter with a physio. She said to me Olivia, you can't do your child's physio because you're too vested in it. And she said find someone else nanny, whatever to do it, because you'll get better results.

Chrissa WadlowGuest33:06

Yes, absolutely. It's the same. When we saw this during COVID, didn't we? With the school, the teaching at home, when it's like even teachers are saying I can't teach my own children, I could do a class of 30 of random children, but I can't do my own. But I think, as send parents, we have to learn.

Dr Olivia KesselHost33:23

Meets must, meets must.

Chrissa WadlowGuest33:26

And she just became so unwell and she was looking gray, she wouldn't go outside. She was really lacking in vitamin. She was constantly unwell. A mental health I can't stress enough how much this affected a mental health. How old was she at this point? She would have been 13, coming up 14.

Dr Olivia KesselHost33:45

So you've got the hormones as well.

Chrissa WadlowGuest33:46

I mean there's, you know, there's just there's a lot going on at that time of life in a girl's life, yeah absolutely Absolutely, and you know I'm trying to juggle working full time to pay for all of these bills that keep coming in. You know, 10 grand a month. At one point it was costing us with legal fees, working really, really hard to sort of pay for all of that. Whilst trying to be a mum to four because she wasn't my only child I also later discovered that she had been really harming the second child, my second daughter, and so I've now. I've now had a. Well, she's been in trauma therapy ever since this point and that really affected her development. And you think I'm failing nonstop. Nobody's giving us help. I'm on this island and I thought I was strong, I thought my island was good, but it's just really, really hard. There's no way that you can do all of that being a mum of four kids and working is enough without having to fight a system.

Dr Olivia KesselHost34:44

I don't even know. You know without anything else, that's already. You know a lot.

Chrissa WadlowGuest34:50

More than enough. More than enough. And my husband is out of this world. He's such a. You know, I love Brené Brown, right, and one of the things that she talks about is never being 50-50, always meeting each other. You know wherever they are. So he could be the one day I say I'm operating at 20% today and he'll jump up and go it's cool, I've got the 80. And we're very much that. He's a very I hate to call it a modern dad, because that's how dads should be. He does the school run, he does the cooking, he does the washing. You know he's. There's no male or female tasks in this house, and that has been brilliant for me in this scenario. And so we just picked Elaine at that point and I said I'm going to be the one going to the school meetings.

35:33

You try and manage as much as you can at home, but when there were meltdowns or there were mental health crisis, it's really tricky to keep everybody safe, and our second daughter ended up becoming the protector for the twins and getting out of that zone has been really, really tricky. But but yeah, so my eldest, she ended up hitting absolute rock bottom and she tried to take her life several times and she. She even tried to electrocute herself by cutting through a straightener's cord whilst it was on, and there was this massive bang in the house. I thought she was safe, but obviously not. She would break CDs and DVDs to hurt herself with. She was in a really bad way and the ambulance service stopped coming because they were like look, we come every time, we try and talk around, she's not doing anything, she's not high risk. Well, she is, though. She's my daughter and she wants to end the life. So to me, that is the worst thing, and I don't want her to be that statistic in the newspaper that says you know, the family kept asking for help, but no help was forthcoming, and now she's not with us anymore. Nobody cared. Her friends weren't checking in with all these friends that she thought she had, all the friends that teachers had reported were best friends, and she was the centre of this group. Nobody came to check, nobody sent her a text. In fact, they spread rumours that she had cancer, and so anytime she went out of the house, she had to defend herself. Then, oh, how is your cancer? She was like oh my God, I haven't got cancer. What? What have I? Is it that I've got cancer. My mum's not telling me. We had lots of layers going on.

37:12

Anyway, it got to this point where she was admitted to hospital and I said you have to keep her on watching. So she was on 24 hour suicide watch because she was so unwell. But the CAMHS team said to her you shouldn't be here. This is a hospital for sick children. You are not sick, you just need to snap out of it.

37:32

I thought you're working mental health and they kept saying these are physical ailment wards and I said to them well, where did the children like her go then? Because there's loads of them. Oh well, she falls through a crack in the system because you decided to get an autism diagnosis. So they still felt very aggrieved by the fact I'd gone private for a lot of these assessments. So I didn't decide to get an autism diagnosis. I bought an assessment, the outcome of which was a diagnosis, and actually that doctor is an NHS doctor that has a private clinic. So you're actually knocking one of your own here. So you shouldn't do that. Anyway, I ran my solicitor and I said she's been admitted again and he said well, the good news for you is we are now at a point where we can actually go to the High Court. It's going to be an emergency review, it's going to cost you a lot of money, but I can get it submitted today and heard tomorrow, and so all of a sudden.

38:28

That's big, that is really big. And I'm looking at my child, who can't even talk at this point because she's so affected by crippling anxiety and mental health. And so I said to him let's do it. I know it's going to cost me a fortune. I've got to borrow this money from somewhere. It was something like 15K just for this to be done. And I said let's do it. At this point we'd spent a fortune. You kind of go well in for a penny, let's just do it.

38:56

So I sat at her bedside on my laptop preparing all the documents of the solicitor. He was in his office until one o'clock in the morning. We prepared all the documents, submitted them. He took them hand, delivered them to his local High Court and it was heard in a different High Court that day, I think it was heard in Leeds, somewhere up north, and all he said to me was when they do the discharge meeting today and you have social care there and you have cams there and anybody else who's trying to tell you that it's your fault Keep stalling them.

39:29

And I said, right, okay, so, because we will get this heard, I can't guarantee a time, but we need her to go from the hospital to the school, because the minute she enters back into the house, it almost alleviates the pressure off the services because she's out of the system again. So there's just so much gameplay in this and I'm like, oh my God, can I do it? I don't know whether I can do it. So I'm sat in this discharge meeting where cams are arguing with social care it's your job. No, it's your job. No, it's your job. And I thought right, carry on, let's stall longer.

Dr Olivia KesselHost40:01

I think it's your fault. No, maybe it's yours. Keep talking.

Chrissa WadlowGuest40:06

You just keep talking, I just listen. And I said to them you understand, I'm going to keep an eye on my mobile phone because I need to check to see the high court case and what the outcome is. And lo and behold, the phone rings and I said I've got to grab that. And he was my solicitor and he said you're only going to one. All these years of fighting, Chris, we've won. Take a, now Don't worry about a discharge. Get her in the car and down to the school.

Dr Olivia KesselHost40:38

The school had a place for her as well.

Chrissa WadlowGuest40:39

The school had a place. So the school this is how we won actually the school with the only provision to have ever assessed a suitability, because the local authority hadn't done a thing. So they're in inept or shockingly terrible practice has now hung them out to dry because essentially I'd done my bit, I'd got her assessed by that school. But when they were messing about and not sort of assessing other schools and consulting with other schools, they've just shot themselves in the foot because it means now the only place that has ever assessed her for suitability is the school of choice for us. So I said well, she has a RHCP, she's got it finalized. It just doesn't have a school place in it. But if we can get this through the High Court, great, okay, and it is. It was all done on safety. So it was an interim care order. So they were looking after her because of a care proceedings but because of her mental health. So it all fit very beautifully. So off we do. We shipped her off. She was all over the place. One minute she was excited, the next minute she was trying to kick the windows out of the car. But we got her there, we got her settled.

41:47

I was an absolute mess for a week as I was going back and forth. I was going every day and trying to take care of the girls here. Go down there, four hour drive, down, four hour drive. But it was just hell. I felt terribly guilty. I just felt the worst mum in the world and I said I can't believe I can't even look after my own child.

42:05

This is ridiculous. This is you know, I was set up, I was made to be a mum and I can't do it. And so you, you go through these awful, this rollercoaster, really. And then we got this terrible letter through from the High Court saying you've just tried to bypass the system, haven't you? We can see what you've done. So you, you're going to have to take this back to the SEND tribunal, sendist, and see if they will name that school. And if they don't name the school, you need to pull her out. And I was like, at every turn we are trying our best and at every turn we are met with another problem. So we prepared the case for another hearing of tribunal.

Dr Olivia KesselHost42:45

So death by a thousand knives, you know.

Chrissa WadlowGuest42:49

We prepared it for another tribunal which fortunately was six months later. So she got to stay for six months and then nobody's going to be pulling her out after six months because she's shown to have really settled in well. She's attending school, she's got a predicted grade to GCSE of level nines. Across the board. She's an exceptional student who is really developing very well. She's engaging, she has friends. They're never going to pull her out. But we need to get this EHCP finalized. So we go to the tribunal and we said we're not contesting anything other than the placement name. And within a few days of having the tribunal we had the order through saying absolutely you can have that placement name. There we go, it's on the bottom of your EHCP and then a 14 page document telling the local authority why they should not even try and contest it. And I was like finally justice.

43:38

But then started the mopping up period, of course, because I had to. Then I had a stroke and I developed pneumonia. So that was absolutely dreadful and all three of my little children have developmental trauma as a result of what's happened. So they've all had to undergo a lot of trauma therapy and one of them actually has an EHCP. They're fantastic kids, incredibly resilient and robust.

44:01

But I just felt like the entire thing. It started and I was so optimistic that I could just get a diagnosis, get an EHCP, and it took years and years, and years and years to get to where we needed to be, but so much unnecessary damage happened. It should never have been that hard. We've all been left with enormous physical and emotional scars and the whole thing cost £200,000.

44:30

You know and it was at that point that I was like I can't go back to headhunting what a meanial job. It's just ridiculous. I can't cope with people asking me, chris, if I'm in other job that pays 10 grand more. I can't. I can't cope with that, not when these children are being failed. And what would have happened if I didn't have the money or couldn't borrow the money? Would my child have been taken off me? Would she have died? I'm quite convinced somebody would have died. So so I just set up Sunshine and just said part of my high court order was that I wasn't allowed to take it to the press. So I said, well, we'll hurt them in the pocket instead. That's why I genuinely felt so. I thought I'll just run some free pictures.

Dr Olivia KesselHost45:09

Taking that frustration and and, and you know exactly, Seven years later, we're still here.

45:16

And that's a little bit about I mean that first of all, that is just thank you for sharing that story. It's, you know, it's almost unbelievable what you've been through. You know what I mean In terms of you know what a parent journey should not look like with a local authority and the impact it had on you, your family, your daughter. It's just, it's appalling and, you know, unbelievable really. You know, and sadly you're not the only parent out there. You know it's just differing shades and you know it's it's. Unfortunately, no one has a good parent journey going through this with the local authority, and so Sunshine support is there to help parents on that journey. How do you, how, how do you help people and how do you I know we've talked about this before you know picking your fights and how do you counsel parents to to survive the journey? I guess is a good way of putting it or find success.

Chrissa WadlowGuest46:18

And sort of lower stress level. So we know that the things that parents need in order to thrive are connection. They need information and they need a lot of validation and just generic support Well, not generic, actually, very specialist support but they need to know the direction that they're going in. So what we do is we have a lot of information. So one of the things that I've always been very, very keen on maintaining it's something we're very proud to maintain I don't do any direct, direct work with parents, and that's because I don't want anybody to think this is a warrior parent that sets something up and she thinks she can, she knows it all. I don't know it all. I needed to bring in specialists who do know it all or know a lot, and so what I do is I focus on the shaping of the business and making sure that everybody has what they need in order to deliver my dream, which is essentially what this is.

Dr Olivia KesselHost47:15

And as a recruiter, I can imagine that you tapped into your skill set of being able to find those right individuals to be successful in that.

Chrissa WadlowGuest47:23

Absolutely, absolutely. And this is where the information sharing comes in, because we have a team of specialist teachers, we have a team of legal advisors, and between the two we actually can work some fantastic magic, because not only are we looking at that EHCP process, for instance, and having our legal team, in fact everybody is trained in the law at Sunshine, so everybody has as standard the training that is recognized in terms of send law, education law, children and Families Act, all that sort of stuff. And so what we can do is, whilst that awful process is happening, our specialist teachers can come in and help the teachers who are there to make sure the child is traumatized. So they're basically saying look, we can meet the needs. It's going to be tricky, but we're going to help you to do this whilst we get this plan in place and make a decision on where the child is going to end up whether it's the same school or a different school.

Dr Olivia KesselHost48:22

That's brilliant, because then you're stopping that damage that you experienced. You know, because this takes so long and so much damage happens during the process, that that's a fantastic way to address that.

Chrissa WadlowGuest48:34

Yes, absolutely. We do a lot of, we get involved with a lot of research because we love obviously we love research because that pushes us forward. We share lots and lots of information. So we've got a fantastic Facebook page that is just full of free resources. It's phenomenal and a beautiful community as well, because everybody tends to support one another.

48:58

But with the information sharing, we do webinars. We've got an online training academy that people can access 24. Sevens are great for teachers, great for parents as well. But teachers who you know, they sort of think well, I don't have enough time to actually enroll on courses. Well, these are great because they're going to give you exactly what you need to run your classroom, because all children have differing needs and probably I know the statistics say something different, but if we're looking at this truly, it's probably about 60% of the classroom has a send of some variety, so it's going to help the entire classroom. So, lots of information sharing, courses, webinars, loads of Facebook lives, all that sort of stuff, and it's making sure that the information is out there.

49:40

It's not just us doing the webinars, we have international speakers doing the webinar. So we've got Dr Ross Green coming up. You know he's going to be presenting a webinar on his book the Explosive Child. We had Dr Janine A Fisher just recently doing a workshop on trauma, because everybody's affected by trauma so there's different levels of information and different types of information. So it's the law and then the presentation of the child, the clinical stuff. We've got the information sharing.

50:10

We also have advocacy, so all of our advocates are very, very well versed and they get to pick the cases that come in, because then they know the bits of this specialist in. They can really hone in on the detail there and it's much, much, much cheaper than hiring a solicitor. You don't actually need a solicitor in this, which is quite helpful, but if you wanted to go down the sort of judicial review process, then you do need a legal person, so it could be a barrister or a solicitor. But so we have our own legal team who's able to do that. But it just keeps that cost much, much lower for parents and they certainly won't be paying what I paid, which is good. We also offer a lot of pro bono work, because there are cases that are presented to us where we think we cannot let this go. We have to make an impact in this case. So we do a lot of pro bono work.

51:02

We also do a lot of connection based stuff. So we've got online copper and chat. We've got an in-person copper and chat and we've just collected the keys this week for a second premises where it's purely going to be a community room. So it's not going to feel like a council community room. It's going to feel like an extension of our homes. So it feels like somebody's coming in for a copper and they're actually having a chat on a normal level. So they don't feel that it's them and us. It's that we're on your side, we're one of you.

51:34

And coming into our homes don't actually come into my homes. It's a bit of a mess even now, but coming to my home in terms of my work and use this space. But we're hoping that education other than at school, children can come and use the space, home-edders can use the space. So it's very much going to be geared up for our community and empowering them and giving them a safe space to connect.

52:00

But we do that online as well and we've got a private Facebook group so there's lots there. So parents feel validated, they feel supported and through all of it we train them in where to spend their energy, because it's one of the worst things I did was I spent too much too soon and I ended up being really, really unwell. So well-being is a big focus of ours as well. So there's tons that we offer and we have specialists in every area and we've got six people just running our online resources, because there are that many resources that we share. There's a lot of effort that goes into what we do, but it's wonderful. We do make an enormous impact, so it's fantastic.

Dr Olivia KesselHost52:39

And you know what. You're preventing parents from being on their island by themselves. You're giving them and you're equipping them with the expertise and the knowledge and the support to be able to fight. You're rebalancing the David and Goliath kind of feeling I think that a lot of parents have while they're fighting this fight.

Chrissa WadlowGuest52:59

Exactly, and I think a lot of them come to us and they do feel very alienated. And one of the things that we do, you know, a Christmas for instance, we do a lot of events at Christmas that give out things, because we know a lot of seven parents. They want to experience Christmas, but their child is just not able to for whatever reason, and so we give them those opportunities to enjoy things and we do loads. There's just so much. There's floral workshops and there's mindfulness and crafts workshops. There's all sorts of stuff that we do, and I always say I wish I'd had a sunshine. It's exactly what I would have needed when I started my journey.

Dr Olivia KesselHost53:41

Yeah, well, it sounds like it's an amazing place and we'll have all your details in terms of how our parents can get a hold of you. Do you reach capacity problems with people? Are there limitations to what support you can give, or is the door open?

Chrissa WadlowGuest53:58

The door's open to everyone and we are constantly recruiting because we reach capacity and we have to operate a bit of a waiting list. So, for anybody listening, if you do have something you think, well, engage them in about six months time when I need them. Engage us now. So we've got it booked in because we get so busy. But anybody can contact us. If we don't feel that we are the service, we will know a service so we can actually put you in touch.

54:25

But one of the things that we don't believe in doing is sending you around the houses to places, because a lot of the children that come into a service like ours tend to be neurodivergent children, people who are struggling for the same reason as I did. Nobody can see what's going on, and so it's this hidden disability and what you tend to find is the parent is also neurodivergent. Ie me, I didn't get my diagnosis till in my 40s, so what you don't want is to see them get frustrated by us just constantly signposting with leaflets. That's not what we do. We look at every single case and we have a team. So if there's something that's really tricky that comes in, all of our team have eyes on it. It's anonymous. We won't be sharing their details around the team, but we will say, oh my goodness, we've had this case come in.

55:13

What does everybody think Now? We've got decades of experience throughout the team, hundreds of years probably. I don't want to tell everybody our ages, but we know that between us we will know somewhere that can help that person. So everything is very, very bespoke. It takes a long time, of course, but it's worth it, because that we take every case on as if they're a family member. We really care about it. And one of the biggest challenges actually in running Sunshine Support is staff well-being, because staff gets sucked into everything and they love and they believe and they have faith and they have hope and they have all this passion and they connect so well with families. So we have to train them in how to switch off. So I mean tomorrow we have a well-being day, all of us together in one place, having a well-being all day session, which it would be lovely, but we have to focus a lot on that.

Dr Olivia KesselHost56:13

Otherwise it will all fall apart. Yeah absolutely.

56:17

Well, chris, I've got to say thank you for sharing your story and sharing what you've built from that story to help other parents, and I think that a lot of listeners will be looking you up online and it's been a pleasure to have you on the show this week and, because you're so amazing, we will be meeting up again next week to discuss school attendance and avoidance and actually understanding some of the legal kind of stuff and educating parents around that. So I look forward to you joining us next week and thank you for joining us today. Thank you so much.

34:16