Episode 31 Advocating for your child against the odds

Speaker: Nikita Walls

Please excuse any errors as this transcript has been automatically generated

Dr Olivia KesselHost00:06

Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, i'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, i've uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, i will be bringing the experts to your ears to empower you on your parenting crusade. In this episode we'll be speaking with a warrior mom, nikita, who will share with us her epic journey for an EHCP not accepting that her son was just naughty. Nikita's story is a true inspiration of a mother never giving up. So welcome, nikita, to the Send Parenting Podcast. It is fabulous to have you on the show today to share with us your journey with your son, dexter. So I would like to kick off by just saying, first of all, welcome And second of all, ask if you can share with us a little bit of what your journey's been like with Dexter.

Nikita WallsHost01:19

Thank, you so much for having me today. Dexter is now a beaming 10-year-old, but the journey is not easy and it hasn't been from the start. It probably started when he was about around four And I noticed with his development and his behavior wasn't quite right. What I say not quite right. He was just a little bit more out there And then he would start to write, but everything was backwards, which everyone would tell me oh, this is normal, this is how boys develop, this is all you know, don't worry. But then everything was backwards. So rather than us writing from left to right, he was writing right to left, completely mirrored. So push for a bit more help.

02:05

No one would sort of see him as a dyslexic. To review him because he was too young, the school wouldn't support because he was still tiny, still developing, and I finally got in touch with a research company in Reading and they were really interested in seeing his videos and pictures and really want to see him. They've been incredible. We went and saw them when he was about five and a half, which normally at about seven. I think it is that they see dyslexics and they started him.

02:34

Yeah, that's right, they didn't want to put a label straight away and they worked with him with wearing blue glasses, which really kept his focus in place When we move from the blue glasses over to yellow glasses with one eye blocked out, which all sounds very complicated and I myself still don't understand it, but it trains the brain and it's very confusing. It trains the brain to flip it around. So this was about the age of six By the time we got to seven. Dexter now will write what we say is normal. But when Dexter write Dexter's way, we don't say it's wrong in our household, it's Dexter's way. So that was that.

Dr Olivia KesselHost03:14

He's now trained himself to be able to write the right way or the way that everyone else writes, but then he also still writes the way he likes to write. Can't even speak the way he likes to write as well, so that's his go to natural kind of writing.

Nikita WallsHost03:27

So if we were to come home and we have to do any work. if he chooses Dexter's way to write, i never comment because that's his safe space. If he's happy writing that way and he's confident and he's happy, i don't knock it ever. And then in the school setting he just was going down and down and down And then his behavior was getting worse. I got in contact with CAMHS. I spoke to school about an EHCP. They told me he is the class clown and he's a naughty child and we won't support an EHCP. So it's a heartbreaking little journey of watching. something's not quite right in that he needs help, but he's an amazing child. So then it started our sort of EHCP journey where I did it on my own because no one would support me, so I applied myself.

Dr Olivia KesselHost04:18

Well, nikita, what gave you sorry to interrupt there, but what gave you, like, that's pretty powerful warrior mom to do it on your own, because I know, even for myself, when they said I thought I needed to get the school support and I've heard other parents too but you just said, no, my son need this, and so I'm going to go ahead. That's really powerful.

Nikita WallsHost04:35

I think it was. you know, i with Dex sorry, dex is a twin and with Dex and Phoebe I was left a single mom when they were only six weeks old And I also feel there was a bit of a stigma of a naughty child with a single parent, where that's right or wrong to say. I really think that is out there and I'm doing all I can and I can see that my child is incredible. but if I could put him in a creative school where there's not a curriculum, he would beam and shine and he just needed help. He was being disruptive, he was misbehaving and I really feel that actually he's that's why I got on the journey with cams as well that there's something underlining and everyone is just putting this label on him that he's just naughty.

Dr Olivia KesselHost05:18

So it sounds like they were. You know you're trusting your gut instinct as a mom that, and especially probably having twins might help you actually to be able to see that there's something not quite right in terms of how they're both developing and that you knew that there was something else, and that's great. So you trusted your guts and you went forward to do the HCP plan.

Nikita WallsHost05:34

Yeah, so I by yourself, it's fantastic. Yeah, it's a very interesting journey. So I obviously downloaded the paperwork, went through it and myself as a dyslexic find this sort of thing really hard but filled it all into my best of my ability.

Dr Olivia KesselHost05:54

Forms are a nightmare for dyslexics.

Nikita WallsHost05:56

All the evidence, which is non-existent really, because I had no backing apart from sort of results and stuff like that with you know grade and how he's developing within school. And then the dyslexic review, which was really helpful and obviously I got declined. So that's fine. I appealed, it got declined, thought okay, take a breather, we need to get some more evidence here Reapplied got declined.

06:24

So at this, at this point, my relationship with the school had completely broken down. So I made the choice of re-looking at schools fine and struggling at primary where was right and what would be right, and looking at specialists. But it's hard to sort of get them into specialists when there's nothing diagnosed. And so I then found a really great primary school which is still local, which has a higher volume of special needs. They do a lot more outside, a lot more forestry. It is still curriculum, but it was. They were more supportive and I took both the children to see it. They both loved it and I was like, right, let's start a fresh journey. So and I'd also informed them that I was in the process of my third application for the EHCP They met him. I obviously met the incredible Jeanette who is Dexter's specialised Senko private tutor, and if that's her correct, how she would say that is her title, that's what we we literally called yeah, the queen, we call her. And within six months of starting the school we had Jeanette supporting us. We had the school supporting us. We had a successful path of an EHCP starting. Yay, we get there.

07:38

But we get a draft put out of an EHCP, perfect, the drafts incorrect. So within the 15 days I make the amendments. I inform them as soon as I get it. It's not right. Within 10 days they've received the amended EHCP, completely ignored. So they finalised an EHCP which wasn't suited to Dexter. They weren't providing the funds to the school and I have a three or four A4 pages of all of my contact logs, telephone calls, emails, chasing everything. Finally get hold of them.

08:12

I sought out the funding for the school this is eight months later which still got a not right EHCP in place. The bits in school aren't being put in place because they're incorrect. So we're sort of going blind into it. The school are trying to support as best they can. We are now three days away from a year with a false EHCP finalised and trying to get in contact again, which I have been every probably three days and they're now looking at a case of. Oh actually, he's going to be due to do his review for going into secondary school, so we might scrap it all and then do another review focusing on his secondary school. That's great in that sense because we're going to focus on the secondary side. But the last four months no, six months, sorry I've been looking at schools to Dexter because I need to do it a year ahead and they've given me so wait, let me, nikita, let me just stop you here.

Dr Olivia KesselHost09:06

Let me just just to clarify for myself here. So he's in year five right now is that right. So so they're saying let's not do anything for all of year six and let's look at year seven is basically what they're saying. So what about now? I mean, this is a really formative time for him to have not the right support.

Nikita WallsHost09:21

Wow and also I just wanted to make sure that I'm on the right page with you in terms of 100% and also he's now got to an age where he's realised that he's different and he's we're waiting, self-awareness, and we're waiting the we're three and a half years in for an ADHD screening and we still apparently have got another sorry, three and a half years in, yeah, and another year to wait.

Dr Olivia KesselHost09:45

So then the behaviour is then building because of frustration and it's just heartbreak into watch absolutely, and I mean this is this is really instrumental time in a child's development to not have that right support. So where are you going now, nikita, with this? Is he getting the support he needs in the school that he's in currently?

Nikita WallsHost10:05

They are doing the best they can with what they have And they are trying to put everything in place to support him where is needed. But there's not enough funding and he needs a lot more than what he's getting. So I'm getting phone calls.

Dr Olivia KesselHost10:21

And it's his behavior, spiraling kind of out because he's not getting the right support 100%.

Nikita WallsHost10:26

So we have phone calls, meetings and everything is knocking him because you know it's a negative, and he just feels deflated. We're having little meltdowns and like crying meltdowns. Isn't Dexter like Dexter's violent outbursts when his emotions are spiraling And so whatever's going on, it's deep now His emotions are really making him sad.

Dr Olivia KesselHost10:51

Oh gosh, it must be really hard for you and for your family, for your, you know. I imagine it spills out also to his relationship with his twin and your family dynamics. Having that, i know for myself.

Nikita WallsHost11:02

I'm a single mom with a daughter, and I have a daughter who also can have those kind of really catastrophic, or, you know, explosive meltdowns that are just really hard to watch and to be a part of, so yeah, it's big, and especially because Phoebe is academic, whereas she would be more suffers with or struggles with the anxious social side of things, where Dexter doesn't and Dexter's in a class with his sister because there's only one year. So I feel sometimes his frustration and nastiness is pushed onto her.

Dr Olivia KesselHost11:34

Yeah, absolutely, and that they don't have that space from each other even in the classroom, then either It's hard for everybody And she's great.

Nikita WallsHost11:40

She really supports him, but I think sometimes mothers him too much. But and they are thick as thieves. So you know they love each other, they hate each other, but you don't upset either of them because they will. You know they're a little team. So she's got his back 100%.

Dr Olivia KesselHost11:57

So where? in Nakida? you seem like your story tells me that you're an incredible fighter of a mom and that you, just you, don't take no for an answer. So where are you going from this point in terms of your? just to clarify, also, you're with Oxfordshire County, aren't you? in terms of your local authority, what are your next? what are you going to do next, mom, i guess, is my question.

Nikita WallsHost12:15

Well, I'm still constantly hounding the council with titles such as you're failing my 9 year old child, my 10 year old child. I'm chasing cams because his behavior is getting worse, so keeping that locked. But then I've been given the list from county not to panic, because he'll get into a secondary school and everything's fine. The list they've given me I'm shocked with, you know I'm. What's the list? Is it schools? Yeah, the schools.

12:44

So I've now been in contact with 42 schools from my house. 42 schools, yeah, 42 from my house, to about an hour and 20 minutes away. And that's ranging from mainstream, specialized, private, and he's been refused to all of them And that's all 42 that they can't cater for his needs because he's either not justice, let it, he's not, just you know he hasn't been diagnosed ADHD yet or we can't have him because his baby behavior is bad, or he hasn't got any social issues, or you know he's too far behind And you know everyone's answer is don't worry, he'll get into the, his mainstream, that's closest to him. But he's been refused three times there and they can't cater for him And there definitely won't be the ability to have a TA in place or any support in place in the classroom, only potentially outside the classroom. So the list they've given me that he can definitely get into And I mean it's a no disrespectful way to anyone else It's a school.

13:46

There's a school where the children are in hospital, a school where the children have all been expelled where they. There's a school which is sort of physically disabled, mentally handicapped, and Dexter does not fit any of these categories. So at the moment I there's one school that will potentially consider him, but he has to have an ADHD screening, otherwise he won't be accepted and it needs to go via CAMS. It can't be a private one. We're still waiting, really, and it's we're still waiting a year.

Dr Olivia KesselHost14:16

And then what is their rationale? that it can't be a private one? Nikita, sorry to interrupt you there, but why? why couldn't it be a private one?

Nikita WallsHost14:22

This private one isn't catered for any sort of special needs as such, but what they're sort of saying is is we could cater for his dyslexic side, but with the behavior, if he needs some form of medication, they'd want him medicated before entering into the school. So then I found one which is specialized in dyslexics, which I love. I haven't seen it because at the minute everyone's sort of you know, declining or won't even see me based on his EHCP. They've now stopped replying because I think I've emailed them about three times and they've and they've refused him three times Because I'm literally like just meet him.

14:58

He's an incredible little human being, like he's sociable, he can communicate, you know, he's found his little loving gulf and he's a little gentleman. He's been, he's got on a scholarship. Like verbally He's incredible. He's like a little old man in the making but academic is And controlling his behavior in that setting and when he's overwhelmed is just a loss. So at the minute I'm basically chasing, biting, trying to go to sleep, knowing that there's physically no more that I can do. I've now been lucky enough to have an independent lady From sendy ass who is now having a meeting with me on Friday Just to see what else that she can push and help and support And just pray.

15:46

I've heard very good things about sendy ass, that's that, and I just just don't want decks are knocked anymore.

Dr Olivia KesselHost15:52

And I would say that probably a lot of his behavioral issues that might be ADHD, but it also could be just the lack of support and the frustration you know, for what is a clever, lovely boy who's struggling with severe dyslexia in school That's not supported properly for him? You know what I mean. It would make anyone really angry and upset, you know. So I, my heart goes out to Dexter and my heart goes out to you, nikita, because that is, how are you doing? That is a lot to you know. And you have a newborn baby as well. Just to add that into the mix as well. It's not newborn, a year old, but, um, how, how are, how are you coping? How are your stress levels?

Nikita WallsHost16:25

the m juggling balls are just adding with children, work, paperwork, just everything. And Just for me, if I can go to sleep and know I've done everything I can, then I can't do anymore. But even when I look at the situation, you know I don't have Finances to straight away send Dexter straight into a private school. But even if I did, they won't take him. So you know, and as a parent, all I want is the best for him And I think that's the fight that just keeps you going. And there's some points at school at the minute where the school, like I said, have been incredible. They are literally listening to him, they're trying to do what they can with what they have, but the calls and the meetings, it's it knocks at you as I think as a parent, you just think, yeah, am I the only one getting the calls? He's not bad, you know he's. You know I also get that the dramas at home, it's not just in school. But I just think I don't know, i don't know.

Dr Olivia KesselHost17:21

It's, it's it's a dilemma. I think that you're not alone in Nikita. It's that you, you have this wonderful child, that you see their potential, you know what they're capable of, and then you can't find the right educational solution for them and there aren't enough schools. So schools that are specialists can be quite selective. And also, you know, on paper He might not look great, but in person they would see a different side to the picture. But there's just not enough. There's not enough places in my.

17:48

One of my personal passions is, you know, going forward is we need to Build more schools so that for kids that are struggling, that there are the right environments for them to flourish and to reach their potential. Because he does have, you know, anishina, from from the stories you've told me about And Jeanette's told me as well about his golfing and how fantastic he's doing. That takes discipline, that takes attention, that takes concentration, you know, and it's really great because that's building his self-confidence too, because when you're in a school environment like that and you're knocked down so much, your self-worth goes out the door as well. So you know, and that's not something you want for your child. Um, so you are an amazing mom because while while alongside fighting for him, you also have thought of avenues that he can excel at, and one of them is the golf, which we've talked about. But also, um I have seen on your socials um, the Dexter clothing line, which is amazing.

Nikita WallsHost18:37

So tell me about the Dexter clothing line Oh, this is brilliant, dexter, we're a really creative family. Like we eat at the dinner table around, glitter paints out at five o'clock in the morning, um, but he, um, he was just that one day, like having a little calming session doing his drawing, and he drew this little guy And I was like Dexter, he's so funky, like I love him. Um, we could, you could put that on a bit of clothing. Anyway, at Christmas a couple of years ago last year I think it was I surprised him and had the original image put on a hat for him And he was like, wow, i love it. And then all of a sudden he started drawing all loads and there was 12 of them And there are this little guy, they've got like a little figure or they're doing a sport or they're holding something, and he's got big writing on his um, on his hat and on his t-shirt And you know, and he's got his face, but then he hasn't got his mask. Anyway, i said to Dexter right, you know, mommy's going to start your Facebook page, i'm going to set it all up for you. Like, let's get the images converted into stitching.

19:39

I had a really helpful um friend of mine who's kindly helped me who does some stitching herself, has got a small little personal business. And she said no worries, i'll help you, let's get the, you know, the first lot of 12 set up. And I said to Dexter, we've really got to try and market it well because you know, as I, wouldn't go out and buy a 17 pound Charles t-shirt and not really understand what it is, or it's not really a brand or a maker. So, you know, tell me about your little guy. And it hadn't clicked at all when I looked at the image There's. he's labeled it with a big EW, which really to others is quite basic, but it's quite big for him because he's actually not DW, he's ER. And for him, for the last sort of four years he's wanted to change to his my last name, which for whatever reasons, isn't possible at present. So it's a big DW.

20:27

But then also he has no mouth. And I said, but why has he got no mouth? And then he started to explain to me how he can't speak and he finds his voice hard to be heard and he finds it hard for his emotions to come out of his mouth, and so that's why he's drawn all like the figures or, like you know, the sports, because for him it's how he expresses himself And it really like brought a tear to my eye because I was like, as a mom I didn't see it. So then I was like, okay, let's, you know what, let's focus for every adult and child that feels how you do, like how they show them, you know, their calm, their passion through another way. So it's launched. He's got 12 original designs. At the minute He's in the process of making some more. We're trying to see if there's a way we can connect up with a, you know, with a company or something like that. He also supports or send children, adults, so it can be a real visual for many people.

21:18

But it's a starting journey. I'm new to this. I have no idea what I'm doing. I'm just going with it and like this is enthusiasm is keeping me pumping at night while I'm typing away and trying to work out things, and so it launched last week and we've got a first big order going in tonight. So for him it's not just his creative side and him expressed himself. For me he, you know, isn't going to have necessarily that academic side of him, but it's also a way of teaching him business. How can I make money, how can I do things, how can I get pocket money, you know, in the future, and working hard to achieve something. And also it's a long process which Dexie doesn't deal well with because he's quite an instant. He's an instant. So this has been like a good six months in the making, you know, and then we're going to just see where it goes. But it's really bought like a beam of this is mine, this is my, you know my work. So, yeah, it's been amazing little journey.

Dr Olivia KesselHost22:09

And you know, on so many levels that is so amazing and fantastic because it it lets him express himself, it's let him share with you how he's feeling about his voice not being heard And it's also giving him skills that are going to be so valuable in life. And when I I've talked to some and listened to some you know big people who have dyslexia, like Joe Malone I've heard her speak and she said, you know, her teachers used to tell her she was an idiot and that she would never be be anything, you know. And she loved perfumes and she would make them in her in the bathroom at her house in East London and look where she has come to. And actually that teacher called her up and apologized. But you know, it's really, school doesn't prepare you for life, if I'm honest, um, in my personal opinion, um, yes, it gives you some basic skills, but what? what you're teaching?

22:48

what you're teaching Dexter, and what's Dexter is learning with you, is going to be more valuable, um, you know, resilience and being able to to do something creative and imaginative and make a success of it. So, you know, i just take my hat off to you, nikita. You're a wonderful mother and you're an inspiration to me, and I'm sure all of my listeners will also um appreciate your sharing your struggles, but also your um successes, because you know what I have a feeling that Dexter is going to be just fine with you at his side. He's going to, you know, flourish into a wonderful young boy, no matter what happens you know hope And I'm sure he will.

Nikita WallsHost23:20

I hope, I know, I know he will be fine.

Dr Olivia KesselHost23:24

I have a feeling if he's not, you'll drag him right back and make it fine. Well, thank you so much, Nikita, and I don't know if it's possible, but if we can share a link on my website uh for Dexter's, uh artwork how, how would, how would listeners go about finding um the t-shirts and stuff to purchase?

Nikita WallsHost23:43

Moment. He's just got a little Facebook page and it's Dexter Ball's um Sen clothing and you'll see his little quirky logo cartoon. He's got a cap and like little t-shirt, though, and it just goes through the private messaging at the minute. Keeping it basic.

Dr Olivia KesselHost23:58

Well, what I'll do is I'll include a link to that on my website so that people can message him and hopefully support him in his entrepreneurial start to his career as a businessman. That's great, thank you so much.

Nikita WallsHost24:08

I love that.

Dr Olivia KesselHost24:09

All right, well, excellent. Thank you so much, nikita, for coming on and sharing your journey, and um have a great rest of your week.

Nikita WallsHost24:14

Thank you, appreciate you having me. Thank you so much.

Dr Olivia KesselHost24:19

Thank you Send parenting tribe. If you are new to the podcast, please click subscribe for a new episode every Tuesday. Also visit wwws e n d parentingcom to share your comments or input on any topics you would like to hear on future episodes. Wishing you and your family a resilient week ahead, i'd believe.

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