#17 Who is helping our Autistic Children ?

Kathryn Paylor - Bent (S1 Ep 8) and Reena Anand join me to discuss what it's like to be a parent to an autistic child.

I challenge them to answer questions that many parents with autistic children face. 

• What can schools do better
• Advice for parents who believe their child is autistic
• What would you say to an autistic child

Both Reena and Kat have lived experiences on the subject that I asked them to discuss. They both wish for the best for not only their children, but every autistic child

Links for Reena:

www.reenaanand.com
http://linkedin.com/in/reenaanand
https://www.facebook.com/AsianAutismMum
https://www.instagram.com/asian_autism_mum


Links for Kat:

www.seatedsewing.co.uk
www.facebook.com/seatedsewinguk
www.instagram.com/seatedsewing
www.linkedin.com/kathryn-paylor-bent-98631397

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Transcript

Scott Whitney: 0:57

Hello, welcome to the next edition of the All4Inclusion pod. This is the first type, or the first of this new type that we're doing where we're, we're bringing in two or three people who've got something in common to, to discuss a single topic and, and then provide a combined answer. So first of all, I am joined by, by Reena. Let me bring Reena in. Reena, how are you?

Reena Anand: 1:30

I'm good. Thank you. Thanks for having me on.

Scott Whitney: 1:34

No worries, no worries. Do you mind first of all, just letting our listeners know a little bit about yourself?

Reena Anand: 1:41

Absolutely. So my name is Reena, I am the proud mom of two children. My eldest is Eppi he is nine and he's autistic. My youngest is six Eshedn. And as far as I know, he's not autistic. And I used to be a lawyer for a few years. And then I became an ombudsman specialising in cases involving the Equality Act, especially race and disability discrimination. And last year, I decided that I was going to leave all that behind, and focus on autism, acceptance and awareness in black, brown and ethnically diverse communities. Because all the data shows us that these children often get later diagnoses and don't get the support they need. And it impacts their ability to thrive in the education and other environments and inspired by Eppi who's doing really, really well. You know, I've got really great relationship with his school and really kind of transformed how I parent based around his needs. And I'm I have really passionately believed that all parents are empowered to, to do that. And sometimes there are cultural stigmas and judgments and other issues that can stop parents from feeling that empowered, and I'm basically on a mission to show that it is possible, you can love life, and you can be totally in love with your autistic child.

Scott Whitney: 3:09

Excellent. Thank you very much. And Kat you introduce yourself, please?

Kathryn Paylor - Bent: 3:15

Hello, yes, lovely to be here. Thank you for asking me. My name is Kat Paylor-Bent up in Durham, and I am the seamstress who creates clothing and weighted blankets for disabled adults and children. And I have a son Tom, who is 15 now I was made disabled 15 years ago, Tom was only six months old. And for a number of years, Tom's difficulties were blamed on me being disabled, and the fact that I had carers in. And so Tom was quite late in getting a diagnosis because it was my fault that he was acting the way that he was. And so yeah, it was quite a traumatic start into being a parent of an autistic child. Because everything was blamed on on me and, and my disability. But, yeah, he's doing well he's doing okay, and we've learned a lot along the way. And I really want to share that with as many people as possible to make their journey through being a parent of an autistic child a bit easier and a bit more on understanding that it's not your fault, and that you're doing the best that you can. So yeah, that's us.

Scott Whitney: 4:47

Excellent, thank you. So I've got I've got three I'm going to put a timer on for 15 minutes, but we can go up to questions for you both and, and both of your journeys with your children are very different at different ages. So I'm hoping you won't just come up with a common answer straight away and and if you do, it's maybe discuss in and around them a little bit. So I'll give you all three to start with. And you can go with it yourself and do it do it how you wish to. So question one is what one thing could schools do better to support children with autism? Question two is what is the first thing you would recommend a parent to do if they feel their child has autism? And then finally, what one piece of advice would you give a child with autism? 20. If if need be. And, and yeah, far away.

Reena Anand: 6:05

Amazing. So there's questions about what can schools do better? I think the one that I think the first point I want to make is that often with schools, local authorities, health, there's always this focus on what the parents need to do? You know, how should the parents be had we have in the parents go in on courses and be better parents. But actually, this is a two way street. So I think the first thing that schools should be doing is looking critically at how inclusive is their ethos in the school, practically, because it's really now if you go to any Schools website, they'll say their inclusive version mean, you know, how familiar are your school children with children who have additional needs? And you know, if you've got one in the school? Why not? I'd be asking, I'd want to know why. Why is that? You know, so I think that would be the first the kind of the first thing that comes to my mind is, it's all you know, don't just focus on what parents need to do. It needs to be about what what can what can teachers bring to the party here as well?

Kathryn Paylor - Bent: 7:14

Definitely. Yeah. And I think a lot of especially with us, we found that it was, Well, I tell you what, let's give him another term. And we'll try this, like, let him get a little bit older, because it might be just his age, and you miss so many opportunities. And before you know it, you've lost another school, yes, and you've got a new teacher. And you've got to start again. And they're just, it feels like delay, delay, delay. It's almost like once, once it's been raised as an issue, then actually everyone should go, Okay, let's stop. And let's look at it now. And see what it is now, rather than waiting to see if they grow out of it. Hopefully, if you are inclusive and designed for everyone, then that kid will still go along the process. And you'll very quickly learn whether it is behavioural age or condition. But I think a lot of time is wasted. And it's just, it's a crying shame for the kids, because it's the kids that suffer in the end along with the parents who feel like they're never listened to. never believed.

Reena Anand: 8:28

Yeah, completely. I completely agree. I think it's there's always going to be pinch points of difficulties, like transitioning to different year groups, inevitable changes. But with the right attitude and partnership between the parent and the school, you can, I mean, I don't, you can't, I don't think you can eliminate them. But you can definitely make that journey a bit smoother. I think I speak to so many parents who feel like I suppose every day is a battle. And that's quite hard on your own kind of mental health. And then if you feel like you, you have to go into warrior mode every day, that you've got to be on the kind of defensive that's quite a, that's quite an exhausting way to live.

Kathryn Paylor - Bent: 9:17

Extremely. And I think, with kids, having kids with additional needs in the family is hard on everybody. But I think everyone's like, Oh, this school is tight. It's the best time of their life, but not when you're in Warrior mode, not when you're constantly having a fight and say, something's not quite right. And then you're poo pooed. Or there's, there's always another reason. And I think there needs to be a lot more trust around parents and lived experience. Because I know a lot of parents aren't believed. And I know a lot of parents whose kids act exactly like Tom, they can mask and they can bottle all day. And they get home and the world just collapses. Because they're home and they're safe. And that is soul destroying. No, you've got to send them in the next day for all that trauma to happen again.

Reena Anand: 10:15

Yeah. as well. It's like, why are you saving this for me? Like I have to still work as a parent doesn't stop right? You just shift from one role to the next. And then on top of that, you hear you're the teacher can we just had a really great day today. And you're like yeah,

Kathryn Paylor - Bent: 10:34

just always settle the super lazy like. Yeah, I definitely think trust and belief impairments needs to be we're not making it up.I don't imagine for a minute that being a teacher is an easy job. And it's certainly not a career I ever wanted to go down. But I think it would be a lot more rewarding if you actually trusted what you were hearing from home, rather than it always feels like it's very seminars where the teachers we know best your money, the parents. Yeah. But actually, I live with this child. 24/7.

Reena Anand: 11:17

Yeah, totally. I think it is having that default as whatever the parent says. That's what happened. Like that parents interpretation of that is not exaggerated. Or, you know, if you look at the flip side, why would you want to say that you're going through all this?

Kathryn Paylor - Bent: 11:36

Yeah, just for fun,

Reena Anand: 11:38

you know? Who would? Yeah, that's it. No, idea. Have a lovely evening. So as your baseline needs to be okay, this is what I'm being told. And I'm just going to absorb it as the truth unless I have evidence otherwise.

Kathryn Paylor - Bent: 11:51

Yeah, yeah. I remember having a conversation with Tom psychiatrists, he, he's got really bad mental health issues. And we've had suicide attempts and self harm from him being about it, seven or eight. And I remember sitting saying, Look, we have pulled the pin out of this grenade. And we are not in control of what happens. Do you honestly think we will be sat here as parents going, you know what? We can't call up any more, we don't know what's going to happen? Do you think we do that for fun? Yeah, we've come asking for help. Do you think a normal family who thinks they can call and are alright, would come and ask for help? I worry, we're coming to you, because we want something from you. But again, it's like, well, it's it might be a little exaggerated. You start losing your mind after a while.

Reena Anand: 12:46

I mean, like, from my experience, like the teachers that, like if he's heard have been amazing. But I feel like the issue is actually kind of greater than just this, this is about investment at a way higher level. Yeah, about you know, as politicians as the government, to understand that this is something I was really disappointed to hear that autism training used to be as part of the teachers training. And then for around 2016, it was implemented in 2019, it was removed. And so you're sending teachers in cold, you know, without any understanding, and that's even baseline because you never really can be an expert in autism, because every single child has different arm them with the thought that if they see particular things, there's that possibility could be triggered in their mind that maybe there's something else going on here. And then to have those conversations, whereas it's not only high pressured, I think, you know, for them to have classes of 30, 33 35 children, that on top of that, you're kind of fielding them and their behaviour, you're not really able to under, like, approach it from a position of knowledge and experience. And I think definitely, there has to be a far greater decision, like acceptability and acceptance that actually we need to invest this features to, and I

Kathryn Paylor - Bent: 14:17

think, sort of in line with that the ownership on the money side of it shouldn't be just on schools. Yeah. Because I know with Tom when we were getting these ehcp, the school wanted to give him more support. But they couldn't financially give him more support, but then we couldn't get any. So up until school had given more support. And you're constantly playing catch up because school didn't have 6000 pounds to give my son, because there was another six in his class alone, that we're all waiting on what their decision for us was because they were going to go for their children will all of a sudden, where's the school budget? And that's only one class. Yeah. So there needs to be more investment from a much wider area than Yes. Only your school, will you provide it? And then, you know, then we might add to it.

Reena Anand: 15:15

Yeah, I think the bar is really high like to set the ehcp and you know, things have to be you almost like need to be in crisis before Yes. Or you actually get it and it's like you do and you're right. I completely agree. Why should schools have to be thinking, Well, if we apply for this child? Well, you know, they're not as you know, as at risk. They're all at risk. This one's not as at risk as the other one. We'll go with that one because if we get that then you think they've got to pay strategically and it's ridiculous. Yes. says this child needs support, you'd like to think that would just be okay. Well, do they need support here? Go? You know, why would a school say that they needed it? They've got to account for that money anyway, to Ofsted and local government everywhere, they're hardly going to take that money and then do something. Yeah,

Kathryn Paylor - Bent: 16:00

it's not for the head teacher summer holidays, it

Reena Anand: 16:04

makes no sense. And it's, you know, how much schools are there to educate, not all of them, you know, they're not meant to be creative accountants. And also, there's also, you know, marketers and all of that, you know, they're just there to look after and safeguard our children nurture their mental health and enable them to be educated. But there's way the balance is really unequal. I think.

Kathryn Paylor - Bent: 16:26

One interesting thing that we've noticed, we kept Tom in mainstream as as long as we could, but it became, it got to the point where it is untenable. So he's now in a school run by an autism charity up in the northeast, absolutely fantastic environment for him. But what he is learning now at school around independence and strategies to survive in the real world. And the way he's learning them, actually, every child in the UK would benefit from having exactly the same way. So he's audio visual. So instead of sheets of paper, they play videos, well, a lot of the other children would benefit from that. He's learning travel training, and he's learning how to communicate with the community and interact with the community. All of those things are what I'm gonna say, I'm really old. Now, what we were taught when we were little. But it's not part of the curriculum now that they're taught to pass a test or learn a passage. Well, it's the need these right who's going to teach in those skills when they leave school? Nobody, because you you're in the big wide world, and, and you've you sink or swim,

Reena Anand: 17:47

literally, I mean, what child doesn't want to be told where they're going, what's going to happen next, and what where they're going to be keeping going to play. I mean, children loved that, you know, that certainty and structure. And I thought, for me, initially, when I had both of mine, I think when I had my second child, I think I tried to parent them differently. So maybe a bit more accommodating for Effie, because he was, you know, triggered really easily emotionally and then trying to parent different, it just didn't work. Like there's one, there's one of me I can barely kind of. And so I just basically used all the strategies for Effie for Esheen. And actually, it just totally works. Because they both feel you know that they know what's happening. They know why they're going to a particular place. You know, if it's an unfamiliar place, and there's a social story, they both benefit from that. But there's nothing that I would say, oh, that's just for me, because he's what is it? No. Yeah, so I can Yeah, completely agree. Actually, there's a lot of skills that I think all children would benefit from, and you don't need to be autistic to benefit.

Kathryn Paylor - Bent: 18:51

Exactly. Yeah, definitely. But that goes back to the inclusion thing is what is inclusion? I will teach you and everyone the same? Or are we putting little people in little buckets and pockets? And that's all only inclusion and universal teaching? How it helps everybody? Yeah, I think teacher, there's only one thing to teach them.

Reena Anand: 19:15

And even like things like a curriculum, I would want to see, because now there's a real, we're much better, I think, including texts, and you know, art and things from people from different of different genders of different races and ethnicities. And I wouldn't want to see that in that same way we can celebrate neurodiversity, through the text that children are being taught through art or whatever, you know, when you're holding up role models, they should also have your different neurodiversity is because their children will then see not see as you know, we don't want to have this culture of otherness, that they're different that you know, this, the whole point of the beauty of society is that every single person has a place a unique place of contribution of equal validity. And you can start that quite easily really young.

Kathryn Paylor - Bent: 20:09

If you want to definitely. Well, yeah, if you want to. I remember when we were going through diagnosis with Tom, we were told, every child, every autistic child will have a perfection gene. It's just about finding it. And once you find it, that kid will fly and Thomas's memory so he he's got like photographic memory. And he could tell you when an aircraft crashed who was flying it, how many air stewards like everything, and you think that's what wants to be celebrated that So what were the kids that are great at reading the kids that are great at design tech, that's what we want to read. We don't want this where, you know, they're disabled. And they can't do that. And they might not be able to, but I tell you what they can do that far better than any adult are know. Or they can do this. We're better than anyone I've seen in the 21st century. And that's what we need to be. Yeah. shouting and screaming about. Yeah,

Reena Anand: 21:12

absolutely.

Scott Whitney: 21:15

So it's been very interested in listening in like, like a fly on the wall. There's actually a lot of things that I've learned in those sort of 15 minutes and find it amazing how they've put training in and then three years later, taking that straight back out, you know, how how, you know, the, we've to educate our children, our teachers need to be educated to be able to do so. So, if we're getting back to the questions, because you, you've gone around every single question, I think there, but if you wish to highlight, I'll come to you Reena. First, if you wish to highlight one thing that our school could do better for children with autism, what would you say that is?

Reena Anand: 22:13

I would say, look at your strategy, look at your culture, and critically assess how inclusive it is in practice. And it might not be easy for you to do that yourself. And it might be actually you get some pair of a group of maybe parents or ex other two people from other schools, or whatever it is, all schools have got great critical friends that really cast that inclusive lens on that school. Be prepared to take the feedback and be prepared to act on it. Because you can't expect children to be inclusive, if that is not part of the culture of the school.

Scott Whitney: 22:54

Excellent. Is there anything you want to add to that Kat?

Kathryn Paylor - Bent: 22:58

I'd say trust your parents trust what your parents are telling you about the children. And include the parents of children who have autism or neurodivergent. Have them on your board, have them as your governors and listening to their lived experience. Because it's only by actually interacting closely with parents who have children like this, that you can fully mould your school to be as inclusive as possible. And it's not just a tick box, that we've we've got a couple from here a couple from then it's actual inclusion that that is

Reena Anand: 23:46

true. You know, you've mastered inclusion when those children feel like they belong in that school environment.

Scott Whitney: 23:54

Excellent. Excellent. So I'll come to you on the next question first. So Kat, if a parent thinks they have a child with autism, what is the first piece of advice you would give to the parent?

Kathryn Paylor - Bent: 24:11

Trust you gut, because I think you know your children better than you actually do. And one of the biggest things that we found I know is, you've constantly got professionals telling you this and professionals telling you that and you get to the point where actually what you feel as a parent almost gets eradicated and it's not important, because you're not a professional telling the professionals but actually you are because you are the professional in your child. And you are the only one that knows what happens behind closed doors, nobody else does. So, trust you go and fight hard because you there's no one else gonna fight for you. You've got to fight hard and continue until you get the answers that you're on.

Scott Whitney: 25:07

Excellent. And anything you want to add to that Reena?

Reena Anand: 25:09

I think I completely echo what Kat just said, I think also don't be afraid of the label. Some parents are, you know, they go with trepidation. They'd rather you know, there's a lot of denial because they're afraid of what the future might look like but actually know that you are empowered and you can create the life that you want to lead. And the label actually can be really helpful in accessing the support you need for your child. So actually, when we really it's just reflecting inwards of why am I so resistant to it because often It's not to do with the child, it's to do with our own insecurities, or our own, you know, perhaps our cultural upbringing or the society we've been brought up in whatever background you're from. That that might be the reason why. And it's just understanding that and knowing that and processing that, because if you can come out of that, and then reach a place of empowerment, actually, you know, you can totally love life, love your child, and live in an exciting life. It's not like a death sentence. You know, it doesn't have to be, it's what you make of it. Exactly. As Kat was saying, you know, you are on a journey to find your child's like in a gift. And then once you found it, you just amplify that, and they will bloom. But do it in do it with confidence, not from fear.

Scott Whitney: 26:31

Excellent. And then. And then finally, what advice would you give to, to a child with autism? Start with you on this one, Rena,

Reena Anand: 26:41

I would say, you're just amazing. And the most unique individual, every single person is completely different in this world. But there is something very special about autistic children. And I say to Eppie all the time, I am so grateful that I am your mother, because I am a better human because of you. Because of him. I have my whole life has been enriched, you know, I know what's important. I know what matters. And might, you know, I feel like I'm living a life of purpose and joy every day. And I would never have I know, I wouldn't have had that because I didn't have it until he was born. So I would say know that you are a gift, know that you are giving not just to the world, but your family and friends. And, you know, consider yourself a light. And if anybody tries to dim that light step away, because you should just shine brightly.

Scott Whitney: 27:40

Excellent, thank you. And then Kat, same question to you.

Kathryn Paylor - Bent: 27:45

And you can do anything you set your heart on, if the only limit is how big you can dream, and dream as big as you dare to. Because there's a lovely saying, If you reach for the moon, and you fail, you still land on the stars. So you know what, it doesn't matter. You may not be you may not end up walking on the moon ever. But you know what, it doesn't matter. Because if you still got such an amazing gift and talent that it will be recognised and you will make everyone proud that that comes into contact with you.

Scott Whitney: 28:28

Excellent, thank you. There was a lot of a lot of things that you was mentioning. And like I said, they just you know when he was talking about at risk children and a lot of things like I said the spoke about it's just straight away. It was learning points for me and I'm sure we'll be learning points for everyone listening. Now. Have you ever read any of the Tom Fletcher books to your children? So there's, there's one called there's an alien in my book. You know that one Reena?

Reena Anand: 29:03

There were midway through one at the moment and I I'm not I sit with the kids my husband does the reading of it because he does all the voices apparently my voices are not very good. It's it's a lime green colour. So I'm not sure if it's called there's an eight I'm not sure which one it is. See? Both of them love it.

Scott Whitney: 29:23

Yeah, so he does two types of books. He does one that's more aimed at kind of late in your single numbers, early double digits, he does one which is aimed at kind of four or five, six year olds. So the four or five, six year olds are ones you would flip through the first one that is there's a monster in my book. The second one is there's an alien in your book. And the children got to you know, scream at the Alien and things. Yeah, we've seen that. Yeah, yeah. So you get to one page and it's I says alien You don't belong here, your googly eyes whatever. And he goes through all the descriptions and then the next page he turns out you turn over and it's got all different animals and it's something along the lines see alien you can fit in here because you know we welcome anyone with all shapes and sizes and different things like that. And I love reading that book and especially on that page to my youngest because I think he take away the fact it's he's talking about a slug or a whle or a bird and whatever. It actually means people have all sorts of gender, race, disability, etc. So, to me there's that that wider meaning on that and And listening to you to speak just reminded me of that of that book. So we finished we've answered these questions. So, Kat, have you got any last bits of advice or any last thing you want to say to anyone listening or even watching this, this clip?

Kathryn Paylor - Bent: 31:09

Ahhhhh - Why not go to Reena first because the word - im lost for words

Scott Whitney: 31:21

let's come to Rena while Kat thinks

Reena Anand: 31:25

Okay, so plotting was I would say, sometimes it can feel quite isolating when you are an autism parent, when I remember looking around when everyone was really young, and other children would sit in colour and do staff and I could not take him anywhere, I couldn't sit and have a cup of coffee with anyone because I was constantly chasing him, he would find any nook and cranny he had no concept of here, it was really risk averse, like, he had no idea what was safe, not safe. And so it was really stressful. And all of that kind of constantly being switched on can be quite exhausting. So I think it's really important that you find other parents who can relate to your experience, people that you could just be with, take your child, you know, sometimes, you know, along with, you know, if you meet up and stuff, and there's no judgement. So, if you're doing this journey, and you haven't got a community around you, it doesn't matter if the community is not kind of your cultural community or, you know, be prepared to meet parents from outside of your regular community. Because actually, from my experience, they're the most loving and understanding people. And some days you can say I've just had the worst night I was up three times and XYZ had happened. And they just get it. You know, they're just get it. And some and also, like, the best tips I've ever learned have been from them. So there will be groups, there will be pockets of these parents in every single community. Find them. It's really good for your own mental well being. But also like, you know, we want to relax and sometimes go out and, you know, chill a bit. And it's nice to have people that you can do that with who totally get it when you can't leave at the time that you thought you were going to leave because when I was having a complete meltdown.

Scott Whitney: 33:11

Excellent. Thank you. And I've achieved one of my podcast goals. I've had Kat speechless, because I never thought that I was ever gonna happen that

Kathryn Paylor - Bent: 33:24

had a completely like, white screen well done

Scott Whitney: 33:35

if you've got any any parting words now Kat?

Kathryn Paylor - Bent: 33:38

Yeah, so very similar lines to Reena, there are so many charities out there that are ran by parents who get it and key into it. There's some fantastic Facebook groups, where I've literally been at the end of my tether at Crazy o'clock, typing a message and God I don't know if anyone's gonna get this or anyone's gonna understand it. And within seconds, you've got a ping gone. Oh, yeah, we're awake too. And sometimes that is just the sanity that you need that actually, there's someone else going through exactly the same at you at the same time. But I also think it's important to befriend families who've got children older than yours. Because one thing we really struggled with was we had, we had no one to look up to, to sort of get an idea of where would go and we've already said every kid's different. So you're never going to get a carbon copy. But it would have been lovely to understand what transition was like from primary and secondary, or what transition is going to be like from secondary into sixth form. And so don't don't feel scared for reaching out to people where their kids are slightly older than yours, because actually, they've been there they've trod that road and they will have tips and tricks that you don't even think of so yeah, it's all about building that community and join in the people that get it because they're going to be your sanity.

Scott Whitney: 35:26

Thank you very much. So thank you very much everyone for listening. I'm sure you will have been as educated as I have been and and this topic is one that I do love to pick up because it is something that I feel I learned from every single of time and speaking to people like Kat, Reena, and many other people either with autism or with autistic children I think you can learn so so much. So thank you all for listening and and thank you so much both Kat and Reena. Thank you