Unpacking Autism Ep.3: Making space for speech

Reena:

Hi, everyone. You are in for a treat today. I am joined by Dipaley Patel, who is a speech and language associate practitioner, and she runs a speech and language clinic called Happy Chatters in north-west London. She works with children in early years settings and specialises in working with autistic children. Dipaley is also a mum to Ashley, who’s autistic, and she talks openly about the frustration she felt in not knowing how to help her because she was pre-verbal. And working with Ashley has inspired her to now help many other parents and children who have similar circumstances. She’s also founded Ashley’s House, a school that supports autistic children between the ages of four to 11 in a custom-built environment. She’s also created Online SEN Space, for parents to access an environment to enhance and support the development of their children’s communication skills, providing personalised learning journeys in a virtual classroom. She is an incredible woman with an incredible story and it is an absolute privilege to know her. And I’m so grateful to you Dipaley today, for joining me on the podcast and for our listeners to hear your story and a bit more of an insight into the world of speech and language therapists that work with autistic children. Welcome.

Dipaley Patel: [1:40]

Well, thank you for having me, Reena. Oh my God, that introduction – oh my goodness – my head’s going to get really big. I’m just a mum. I’m just a mum like all those mums out there who want the best for their children, that’s all it is. I’m just a mum and to me, I think every mum does it right? Every mother does. They do the best they can for their child, you know? And that’s what I’m just trying to do, and I’m hoping I’m succeeding in some way.

Reena: [2:07]

Oh, you definitely are. And humble to boot. So, should we start, Dipaley? Let’s talk a bit about your ‘why’, what is it? I mean, you could have just taken your skill set and ploughed it into Ashley to just really support her and just be the very best parent and educator you can. But you haven’t stopped there. You’re working, you’ve created the space for parents to support their children at home. You’re building this school. I mean, it’s phenomenal. Why? What is it that you want to accomplish?

Dipaley Patel: [2:44]

It’s these children. I think they’re just so amazing. And I wish I could just get into Ashley’s head and know what she’s thinking. I think she absolutely surprises me. Just actually like all of my kids and all the kids that come to my clinic. Every single child that steps foot in this clinic touches me in a way that I want to help them and help the parents. Because I’ve been through that journey. I know what it’s like. I am a professional and I knew Ashley was autistic, but when she was diagnosed, I cried for a week. Not because I was sad – it was like, ‘What does that mean for my child?’ You know, ‘What can I do for her?’ And then that journey starts, and it’s not an easy journey. And as much as I love Ashley and I love everything about her and I love all my kids, it’s tough as a parent; it’s really tough, you know? And I just think I want to be able to be there for other parents who go through similar journeys and support them and say, ‘Hey you, you’re doing great. You’re an amazing person, and be kind to yourself because it’s not easy’. 

Parenting doesn’t come with a manual, right? It’s all hit and miss. We all have to try our best and everything doesn’t fit. No glove fits all one size. Everyone’s different. Every child is different and you have to work out what the best way is with children, what’s going to be the best for that particular child. Hence the individual plans I do, because no child is the same. I have all my children now. I’ve got so many children who are autistic on my books at the moment. They’re all similar in some traits, but completely different personalities – completely different personalities. And I just want to make a difference for these kids. I think they’re just so amazing. They’re so innocent, they’re so lovely and… all of them. I sometimes feel a bit jealous because I think to myself, she’s in a world of her own, and she’s happy in that world and she’s laughing and she’s giggling and doesn’t have any worries as such right now. And I want to keep that protected, and this is why I’ve created this environment – Ashley’s House is created to protect these children and to enhance their abilities. I think they’re so smart and they’re so lovely, and I want to give a safe environment for them just to be. And be their amazing selves – because they are.

Reena:

Just capture their uniqueness

 Dipaley Patel:

Absolutely. When they go home, take a bit of magic with them.

Reena :

Amazing. So, tell me a bit more about Ashley’s house. What stage are you at? How are things going?

Dipaley Patel: [5:10]

Well, I have an amazing team and I would not be able to do this without my team. I’ve got a great team working with Ashley’s House, and we’ve got a curriculum in place; we’ve got individual assessment processes in place, so we get a baseline and know the best way. Classrooms will be adapted so each child can learn individually. When I go into a classroom, if there’s a cookery lesson, for instance, I expect there to be three different types of that cooking lesson, because you’ve got the children who don’t quite know how to touch things, not quite ready, you know. You’ve got the children who don’t mind touching, their hands are right in. And then you may have the children that are ready to stir and pour. And that learning environment needs to cater for all of those children. 

So that’s what Ashley’s House is all about. It’s all about that individual planning. Looking at the child, I expect the key worker – the teacher – to know this child inside out. If you can’t tell me where this child fits in that bracket, then you don’t know them well enough. So ultimately, it’s all about a child focus, and support these individual people that are going to be doing that as well, because it’s such a hard job. As parents, we do it. But also, as teachers, it’s hard for them too. And I want to be able to support them and say, ‘You know what? You know, you’re doing a great job’, and reward them accordingly. I just think – I’m excited. It’s nervous and scary, but I’m excited about it as well.

Reena: [6:41]

It just sounds phenomenal. I mean, I’ve spoken to so many parents whose children are not able to get that bespoke support and it can be quite trauma inducing actually for some children being in an environment that doesn’t cater for their needs. And I think it will be a lifeline actually for many parents. Have you got a projected opening date for the school?

Dipaley Patel: [7:05]

Oh God, I wish I could open it tomorrow. I really wish I could. I’m so desperate to open it tomorrow. We’ve done a lot of the planning; we’ve got the logos, we’ve got all those things in place. We just don’t have a venue and that is where we’re having a problem. It has to be in a place that’s safe. It can’t be on a high street where it’s busy – you know what kids are like, especially autistic children or children younger who have difficulties with language, communication and risk awareness. You can’t just stop at a high street and let them out. You have to drive in a safe environment, they’d be able to be dropped off safely, go into the building safely. So, taking all those factors into place, it’s really difficult to find somewhere and we’ve been looking for almost a couple of years now. It’s tough. It’s all dependent on when we find a venue really. Once the venue has been found then we can go about doing the next phase of Ashley’s House.

Reena: [8:02]

Amazing. Right, so that is my call out to anyone out there who has land, knows of someone who could source land, to build this incredible school. The team are ready and waiting. Get in touch. Thank you for sharing that. It just sounds like an amazing space. I think the kids will…Aah it would just be amazing. There are lots of plans I hear about – things that the government are planning to do – but it just feels like a very, very long time away. So, I think your initiative with Ashley’s House will be very welcomed by families particularly in this borough.

Dipaley Patel: [8:41]

I hope so. I mean, I work with children, and all the children I work with and parents do say to me, ‘When is it opening? When is it?’ And I was like, ‘Oh my god, if I could have all your kids in this one little room, I’d do it, but I can’t.’ It’s frustrating. I’ve got such an amazing team and they all work really hard around the clock, you know?

Reena: [9:04]

Tell me a bit about Ashley and what’s her journey been like – how’s her language? I mean, it sounds from what you’re saying she’s absolutely loving life.

Dipaley Patel: [9:15]

Yeah, she is. She’s 7, going on 17. Ashley – it was tough I think, as a child. When she was a baby it was tough because she didn’t like to be touched, didn’t like be cuddled. You know, she was constantly like this [clenches fists], and if you just sit there for a few minutes and just hold your hands like this, your hands hurt. She did that all the time, and we had to really nurture her, and we were lucky to find a pre-school for her that accommodated her needs. You know, they set the bar really high. So, when we did go to a school, a mainstream school,  a drop was a hot potato and it was really difficult time. Ashley has only been speaking – I think just since Covid – because when it was Covid I was at home with her, so we didn’t have anything else to do. I had some virtual appointments online with kids, but I put everything into Ashley. We helped with her language skills, it was sequencing – just letting her know what she’s doing, how she’s doing it – context-based language, which is so important. Play, through playing routine, you know? So, I did these things every day, because you do, no matter what happens – Covid or pandemic, rain, sunshine – you’re going to get up in the morning, you’re going to brush your teeth, you’re going to have your breakfast, you’re going to come downstairs. You’re going to do all those things, develop language through those routines, because… You’re a parent. I’m a parent. As much as we like to sit there with our child for ten/fifteen minutes of the day, just solid time, it’s not always possible. 

It depends on the child’s mood as well. I’m lucky, Ashley was really receptive to things. I’m lucky, I have to say. It’s not easy, but she has come a long way. We home school her. So, we home school at the moment, because I just thought the system… ‘failed’ is probably a strong word, but I just felt that it wasn’t supporting her needs. And I think that is what happened with Ashley. And I just felt that she needed to be in an environment where she can flourish, and she has – she’s really amazing. Her language has come on; home schooling has been great. She gets to do so many things other children don’t get to do. She goes to gymnastics, she goes swimming, she goes on farm trips – she goes to the park randomly. We just bought her a bike a few days ago. This morning she got up and the first thing she said, ‘Bike. Park’. ‘In the park’ or ‘Bike in the park’ – I can’t remember how she said it, but she said something like that and it’s great. Her language is just making things so much easier. 

Before it was like, I didn’t know what she wanted; it was really difficult. I didn’t know how to help her. And I think that’s where my struggles came in; I wanted to do so much for this little girl of mine, but I didn’t know where to start with her. And I needed a speech and language therapist because we were working with the NHS, and with the resources they did as much as they could, but I knew she needed more, so my hunt for a speech and language therapist began, and I wanted the best for my daughter. And I did find the best – Sunita, who I work with very closely now. Sunita Shah: she’s changed my world. She changed the way I looked and thought about how to help Ashley. I walked out of there feeling empowered, uplifted. You know, I just felt like, ‘I can do this. I can do this. This sounds doable’. And that’s where our journey started. We started offering choices, creating opportunities, you know, giving her opportunities to talk, those kinds of things. Every sound she makes, every whimper she made – I responded. You know: ‘Good talking, well done’. 

For the first year, I would give her breakfast every morning and I would feed her – because she was only three at this point – and every day, without fail, I would go ‘Finished!’ and put the bowl down. One morning I got up, gave her breakfast, fed her Weetabix and I didn’t say – my phone went – so I went to look at my phone, and she said, ‘Finish’. And I was like, ‘Oh, my goodness, did she just say ‘Finish’’? 

And it just goes to show: wait, observe, wait, listen, give your child an opportunity because it happens so quick, and yet constantly, as parents, we facilitate everything for our children. We do everything for them. You know, why do they need to speak? We know when they’re hungry. We know when they need food; we know what toy they want to play with. We know what program they like to watch, because we’re so in tune with our kids that inadvertently we create these children like, ‘Why should I say anything? Mum knows what I’m doing. She knows what I want to do, so…’. But I think that changed the way I did things as well. And I held a few seconds back before I said anything, and then the words started coming out and she did a lot better. ‘Ready, steady go’, simple things like ‘Go’, and she’d get so excited. And that was at three. She was not even at a one-word level – by five or six, she’s running off sentences now.

Reena: [14:25]

Wow, that is incredible and so inspiring. I think parents listening will find that so inspiring. And it’s not to say obviously that every child will have Ashley’s journey, but it’s just the hope that – you know, children who maybe have quite limited language – there is that hope that actually, with that consistent and sustained patience and training and love and all of that wrapped around them, that there is a possibility that they can progress in the way that Ashley has.

Dipaley Patel: [14:57]

Yeah, they can. And I see with my patients as well. I see them with my little ones, you know? And I get parents texting me sometimes in the middle of the night cause something’s happened, and they’ve told me and my heart skips a beat, do you know? And I just think to myself, ‘Oh, that’s so lovely, that’s great’. And Ashley called me – she can’t say mummy because she still struggles with her frontal speech, every ‘muh’ is ‘nuh’ – so she calls me Nonny. She called me Nonny last year for the first time, I just was so overwhelmed. I just cried buckets. Now she doesn’t stop. It’s ‘Nonny, Nonny, Nonny’. 

I told her off the other day because she wasn’t doing any good listening. I prepared her: ‘We’re going swimming. Okay, when Mummy says ‘finish, home time’, one more duck song and then we go. And I said, ‘What are we going to do?’, she goes: ‘Good listening’. I said, ‘Well done’. So, we got into the pool, had a great time – ‘Okay Ashley, home time’. She kicked off. It was like, no, she did not want to get out the pool. The screaming, the tantrum…. I got her out eventually, got into the changing room and I’m talking to her saying, ‘Mummy’s not impressed. You said you were going to do good listening, and you didn’t. What did you not do?’ ‘Good listening’. ‘Well, no, you didn’t, did you?’ And I must have carried on a bit. She turned round Reena and she said to me: ‘Enough’. I just stood there. I did not know where to look. I was so ‘Oh my god, what just happened there?’ And scary thing – she sounded just like me, she mirrored the tone, the attitude, the way…it was just like looking at a little version of me. ‘Enough’. And she understood, because she wanted me to stop. And you know, with children who are autistic, validation is not always there. You know, you’re talking to them and you don’t always get that validation – ‘did you understand what I meant? Did you hear what I said’, you know, so to be able for her to have that validation was just amazing. She’s amazing. I just think I wouldn’t be where I am without her.

Reena: [17:07]

Yeah, I share that feeling about Evy actually. And I think, my goodness, my world has opened up to such a deeper level and my own self-awareness has opened up at such a deeper level because of him. It’s like every word is precious. Every acknowledgement is precious. You see the beauty and the joy in every interaction. Which is not how I was conditioned to be. That wasn’t my reality when I was being parented, but this way is so beautiful because there’s always something to celebrate as well.

Dipaley Patel: [17:48]

Oh God, absolutely. And it just makes life more interesting, right? It’s just like, ‘Oh my god, what delight are they gonna bring out today?’

Reena:

Yeah, I mean, it’s challenging, but, you know, but it’s very joyful.

Dipaley Patel: [18:02]

When you’re looking at the wine fridge at 10:00 o’clock in the morning, you’re thinking ‘It’s 5 o’clock somewhere!’ Is it too soon, you know? But the positives outweigh so much, the positives weigh so much higher, I think. It’s hard work, but I think this is why I’m so passionate about early intervention. You can teach them these skills that they need to be able to converse, to be able to ask for things – just simple things. I mean, they’re going to learn shapes, colours, numbers, all of that throughout their lives – but can they ask me for a biscuit? Can they tell me they’re hungry? Can they say they want this, or they want that, and that’s what you want for our children. We want them to be able to tell us those things, because those are things that we can actually fix and help.

Reena :

Yeah, yeah.

Dipaley Patel: [18:51]

And these are things being a parent is all about, doing those things for our children, listening to our children. That’s why I say, I wish I could get into Ashley’s head sometimes and think how she thinks. She’s phenomenal, and she’s got a great team behind her as well. She’s got good family. She’s got good family support network; she’s seven now and she goes to Girls’ Brigade with the children that she went to pre-school with. They’re all growing up together and she’s well loved there, and the members of staff there – today we had a party there and they’ve got a bus out for her, and this toy that she likes, created this environment for her so she doesn’t feel overwhelmed because it’s new, it’s different. The routine is different. The party things – it’s going to be loud, you know? And as a parent, it was just so lovely to see, so touching to see that somebody’s gone and made that effort for her, and that’s so nice. And those are the kind of things that makes me sit back and think…I get tearful and if I start crying… so emotional, there are some amazing people out there, you know? And I think it’s all about just creating awareness and just – these people are amazing. These children are amazing. Be amazing with them. You give them this much [small gesture] they’ll give you this much back [wide gesture]. They give so much back. 

Reena:

Alright, I’m gonna segue you now into a bit more speech and language therapy.

Dipaley Patel:

Yes, let’s do that.

Reena:

In terms of your work – because obviously you see a lot of families, you see a lot of children – what sort of barriers do you see? You know, even in terms of, say, parental expectation or any other sorts of barriers through the work that you do?

Dipaley Patel: [20:39]

I have a mixture. I’ll be really honest with you – I have a mixture. I have some parents that are really open to it. You know, they understand the difficulties they are facing and they want to help their child. I can always tell in clinic which parents do their homework, do the things at home and which don’t. I can always tell. You just know. And then you get the other spectrum of parents where they’re almost in denial. You know, if they start talking or they want a quick fix, and I’d be really honest. I’ll tell them, ‘I’m not the right person for you’. Your child will see me an hour a week; it’s not what I do that’s going to cut it, it’s what you do at home, it’s what the nursery does. Really, it’s important that holistically we look at the child – that every environment he or she’s in is catered towards them. The consistency is so important. So, it is tough, but I have had some parents where I’ve had to say, ‘Look, I don’t think I’m a right fit for you’ and recommend that somebody else. 

I have parents who want to put their child into really high establishments and the pressure they put on their children…it can upset me sometimes I think, but I’ve got to remain professional. But I think to myself – to me, it’s ‘Enjoy your child and celebrate these little things’. Don’t think about what they can’t do. Think about all the great things they can do and already are doing. When a parent said to me, ‘My child just points’, at least they’re pointing. I see some children that don’t even do that, you know? So that’s a huge step in itself. They’re babbling, they’re making sound – at least they’re doing that to start. Before we talk, we have to babble; that’s what we do – you babble before you speak and makes sounds. It’s not easy, but you have to put the professional hat on.

Reena: [22:25]

Obviously, I don’t want to draw generalisations, but from my experience, I think a big thing I struggled with was – I guess the expectation of what kind of child I would produce, and then the reality of the child that was born, who was autistic. And that feeling of, ‘My child isn’t the one that I had up here [in head], who is the son of a doctor and a lawyer, who is just some kind of intellectual genius, who’s walking before one and just hitting all his milestones’, you know? That was the child that I had birthed before he had even physically been born, and yet the child I had in reality was having speech and language issues, was having massive behavioural issues and interaction issues with other children – really demand avoidant. You know, all of these things which culturally were considered bad behaviour or poor parenting, and I just wonder – I guess it’s more of an open question, I suppose – but do you see any of that cultural influence through the families that you meet?

Dipaley Patel: [23:58]

Absolutely, I really do. It is sad because – I don’t even know how to put it – they’re mourning the child that they dreamt of. And that child is not that child. That child is different, you know? Sometimes they post something on Facebook and I’ll see it and I’ll be like, ‘Are you okay, is everything all right?’ You know, I had a parent said, ‘Don’t look at the rain, learn to dance in the rain’ or something like that. But then she put a comment at the end saying that ‘Oh actually, I need to learn to do that, because I’m too tired or too stressed to even do that’. And I thought to myself, ‘Oh, are you okay?’ and I had a conversation with this lady and it was really sad – she goes, ‘Because I worry for him. How are they going to do? How are they going to be? How is society going to accept him?’ I said, ‘Don’t worry about society right now. Just don’t worry about that at all. Worry about you’. You accept him. It’s important for you to accept him, you to understand him. And if you do that, that’s half your battle won; you will become the Mama bear and will protect that child with everything you have. It’s important that you accept it. Don’t be in denial about it and think. ‘Well, if we do this thing, that will happen, or if I feed my child this, this will happen. Or if I give my child this supplement, they’ll start talking’. There is no such thing. You can’t give your child a pill or supplement for them to start talking. It doesn’t work that way. To me, it’s hard. 

A simple thing – I went to a temple with my daughter. And Ashley loved the lights. She loved the lights, she loved the flickering divas, you know? And she wanted to go and see all of that. And I would get ushered: ‘Shh, you know, don’t let her go there’. I’ve got some auntie coming up to me and telling me, ‘No, don’t let her go there’. Ashley goes to church. She’s welcome. She’s in the church, you know, with the priest standing there while he’s giving his ceremony. Why can we not have that in our community? Why is that not accepted? Why is that not recognised with us? They’re children, they’re still children. Why? I find it hard to talk about sometimes, because I don’t understand it. I don’t understand it myself. We should be providing environments for these children. Like, you go to a shopping centre you have, you know – quiet time. In a temple you could have a quiet time where parents can come with their children. That’s where we as parents want to be, right? Sometimes if you’re having a bad day, you want to go somewhere and have that. Why can’t we have that for our children? It is a massive stigma. There really is. They don’t understand it, and I think they see – like you said – that your child is a delinquent, or just badly behaved.

I actually put a badge on my daughter saying, ‘I’m autistic. What’s your superpower?’  Or ‘Be patient with me. I don’t talk very well’. And I find that really helps me, because I’m super, super proud of her, and I’m not going to hide her because I think she is someone who cannot be hidden, she’s a force in herself, you know? But I’ve been that parent, when parents look at you, ‘Oh my god. What are you doing with your child?’ You know, I remember I was in a hospital, and we’re walking out and Ashley just did not want to go. She wanted to count. She would count the squares on the ceiling, you know, the lights on the ceiling. She was counting them going out and then one was off – the bulb had blown or something. And she just lay there, right there, like, ‘Fix it!’ Obviously, I can’t, right? I just sat there with her and I could see people walking past me and thinking, ‘What are you doing?’ But at that point you switch off because you’re thinking, ‘I don’t care about all of you. I don’t have the time or the energy to think about what you’re thinking. I need to be there, focus on my child’. And it’s hard, and it’s hard to get to that place.

Reena: [28:25]

I think that when you’re there, that is a real place of strength. And I think often we don’t start there, but if we do the work, we can totally get there because that’s the space from which we can then advocate for our child and be that protector. And speaking about faith, I really resonate with that experience you shared because I used to go to the temple every week. That was my sanctuary. I had a lot of trauma when I was younger, and my sanctuary was prayer. And when I had Evy, I didn’t feel that space was accessible anymore because he couldn’t sit. And during the meditation, it’s required that everybody is silent. He is not going to be; he was never going to be. Still wouldn’t be silent for anybody. It just shut off my ability to go to these places, and actually, all faiths have common values of kindness to one another, of non-judgment, of just pure love. That actually, if we go right back into the faith –of course you should have a room for these children if they need to go and spend a bit of time, or a space or a time where they can just be themselves and they’re welcomed. And I don’t want to go to a place of worship where people look at me sympathetically. Look me in the eye, meet me where I am and welcome my child as the loving being that they are, not as ‘Oh poor her. She’s got an autistic son’. I don’t want that.

Dipaley Patel: [30:00]

Yeah, absolutely. I totally get it. Why should we? Why should he be put into that category? Why should we be put into any category? It baffles me. It really does. And we’ve moved on in so many ways, but in so many ways we haven’t, and I think awareness is really important in cultures. I don’t know what’s in store for Ashley in the future. I don’t know. She could be the next Prime Minister for all I know. She could be a musician. We don’t know. But I’ll tell you one thing, and if a parent can take this away, it’s just – enjoy them. Love them lots. Enjoy them because they grow up so quickly. And before you know it… And it never stops, right? Because you’ve combatted one hurdle, another one comes along, then another one comes. Someone actually today, said to me that: we change as human beings every seven years, so we’re not the same person. It’s like we’re becoming like a new person every seven years. I never knew that. Did you know that?

Reena: [31:05]

I didn’t know that.

Dipaley Patel: [31:07]

An elderly lady told me this, and I actually sat there and thought to myself, ‘If I look back on my life, the changes that have happened with me, things that mattered to me X amount of time years ago, doesn’t matter to me anymore, you know?’. Ashley suddenly has become really sensitive to noise. She never used to be like that, but now, if she hears a loud noise, she just goes like this [hands over ears]. And I thought, this is a really new development in her. And then she pointed out to me, she goes, ‘How old is she? Seven?’ Every seven years we change. I’m like, ‘Oh my goodness. I already think she’s seven, going on seventeen. I’m not ready. 

Reena: [31:01]

Amazing. Are you able to share any success stories – and by success I don’t mean pre-verbal to, you know, millions of sentences – but through your work, just some examples of the kids that have come to you and their development that they’ve had.

Dipaley Patel: [31:22]

Yeah. I can. There’s so many. And there’s so many because I get recommended a lot as well. A lot of parents will say, ‘So and so has recommended you’ and do you know what I think it is? I think it’s because I just take the time to get to know them as an individual – as an individual family. I don’t just work with the child, I work with the parents as well and once you’ve opened that lock up, that parent’s brain up – you open it up and they start to notice things a lot more. Then they start to notice that child making that progress. And I think the biggest compliment I actually had this week, was an education psychologist said to me that ‘I’m absolutely amazed with the work that you’ve done with this child’. I was just blown away. I really was. This is the professional coming up to me and saying to me, ‘I’ve met this child, and I’m seeing this child a year later and it’s absolutely phenomenal the work that you’ve done’. And yes, so I had some really good stories. I do have some stories where I’m having to tell parents, ‘Look, I just don’t think your child is ready for speech and language at the moment’.

Reena: [33:33]

That’s really interesting. Can you say more about that? So, if a child isn’t ready, what other stuff might you be encouraging those parents to engage in with that child until they’re at the point where they’re ready for speech and language therapy?

Dipaley Patel [33:48]

I think a lot of it’s focus and attention. Attention and listening skills are extremely important, because if you haven’t got your child’s attention, they’re not going to listen, you’re not going to do anything with them. And it’s not just about looking or eye contact. You’ve got to be able to have that attention. I mean, you can listen to a radio – you don’t see the person talking, do you? But you just listen to that voice. You listen to the conversations. I have a few parents that I’ve worked with recently where I felt their child has sensory needs that are too great, and I think they need to work on their sensory integration and so I referred them to occupational therapists. Let’s do some work there and then maybe come into speech and language. 

But sometimes speech language is not always the first point of call. Your child has to be ready for that. And at that point, then they can come and do speech and language. But yes, I would recommend occupational therapists that work on their sensory needs. We all have senses, right? So, if one of our senses goes, the other one kicks in, but with children who are autistic or have any sensory processing difficulties, it could be extremely overwhelming for them. How do they manage those senses? You know, regulation – all of those kind of things come into play, and they need someone to be able to help do that. Sometimes it could be something simple, like jumping on a trampoline before you’re doing some work with the child. Or a child likes to spin or something – put them on a swing or a slide. You have to get them to that point where they’re ready to focus. So yes, I’ve had to do that with a few of my patients. I’ve noticed that I think sensory is so, so important, and that’s why even in Ashley’s House we will have a speech and language therapist, we’ll have a speech and language therapist team, we’ll have an OT team, we’ll have a physiotherapy team – because you have to look at the child holistically. You’re going to look at every area of the development, not just speech and language. I mean, it’s a fundamental part. Of course, it’s one of the most important parts, but so are the other bits. It’s a jigsaw. You’ve got to put those pieces together, and create and help that child be that amazing person that they are.

Reena: [36:02]

Incredible. I mean, if there are any parents listening and they’ve got concerns about whether their child’s speech has developed enough, or perhaps they haven’t started making sounds – where should they go?

Dipaley Patel: [36:20]

First point of call is your GP, or health visitor, depending on the age of the child. If you’ve got a health visitor, contact your health visitor, go to your GP and get a referral to a paediatrician. I think that’s really important to do that. If you’re thinking of early years, that’s where I would go, definitely GP or health visitor. At the moment, because of Covid, I don’t even want to begin to tell you where the waiting lists are, how far along they are, and it is tough. But a speech and language therapist – if you can’t get NHS right now – but if you can, speech and language therapist. I mean, I run a mother and toddler group for parents to help develop their children’s speech and language through routine and play. And I run the group one hour a week, and I’ve got lots of parents there as well. Some children have got anxiety because of Covid, haven’t been exposed to the outside world. They’ve gone into a nursery setting now, they don’t know what to do. Some children are talking at home, but they’re not talking anywhere else, you know? Situational mutism. There’s so much going on right now with children it’s just hard to know what’s right, but I definitely think GP is your first point of call or health visitor.

Reena: [37:37]

Thank you. And are there any practical things that parents could do at home to just promote their children’s speech development?

Dipaley Patel: [37:47]

Listen to your children. They may not be speaking words, but they’re doing something. Okay – look at your child. Listen to your child. React to everything, every sound they make. If you’re talking to your child, make sure you’re down at their level. Look at them eye to eye. They can see you, can see your mouth moving, they can see you, they can hear you – those kind of things. Keep your language very simple. I think some parents feel that the more they talk to their child, the more they’ll actually talk. But there’s nothing worse than your child saying something that they have no idea what they’re saying. I have a four-year-old child I’m working with at the moment, can read the newspaper cover to cover. Cover to cover – it’s phenomenal, but he has no idea what he’s reading. So, when I do story times with him – we did The Gruffalo recently, and we did it on a screen – he could not follow it, because he didn’t have the book; he couldn’t read the words, you know. So, he wasn’t understanding that. It’s important, that context-based language. 

Everything that you do, put language to it. Brushing your teeth – brushing teeth [motion]. Open the tap – open [motion]. Light on [motion]. Tap off [motion]. Water. Give them the water. Don’t wait, don’t even do, ‘Oh, you want water?’ and then wait a few seconds – it’s got to be like a reflex. Because their processing’s there, it’s just not developed fully. Where you and I can process something in a miniscule second, with children, it takes them a little bit longer and you can miss that boat. Miss that boat, then you’ve lost that chance. 

Snack times are a great time to promote language. It really is, you know. Give them something they like. Let’s say they like blueberries. Give them one blueberry, put the rest of them in a container. They’re going to want more, right? They’re either going to point or gesture or they’re going to tap the box, you know.  Use your language. ‘More blueberries. More’. Open: ‘Another blueberry’. Close: ‘Mmm, good eating. Yummy, yummy’. If you’re running after your child while they’re eating, you’re missing out on that interaction. 

Bath time’s another great time. Even in the car. When you’re in the car – you know, you’re going home. I realised Ashley can say a lot more in the car, because I used to just talk to her all the time about things. ‘Where did we go? Who did we see? What did we eat?’ And then one day I said, ‘Oh Ashley, where did we go?’ and she went, ‘We went Nanny house’ and I was like, ‘What?!’ ‘What did you eat at nanny’s house?’ ‘Chicken nuggets’. And then, ‘Who did we see at Nanny’s house?’ And she named all these people that she’s seen. She blows my mind away. She really does. 

Talk to your children because you don’t know when or how they’re going to really exceed your expectations. You just don’t know. Simple things – always, always create opportunities for them. Hold back, make everything away. They’ve got to ask for it. Get them to ask for it. Visuals. Kids learn visually. If you come into my house it looks like a pre-school. This is my clinic here/Ashley’s classroom, and it is just ‘now and next’ boards. What’s happening next. All of that everywhere. You know, she learns visually. We’re doing at the moment ‘We’re Going on a Bear Hunt’. We’ve actually got the visuals of the bear hunt story all the way up this wall, and she looks at that and she reads it and she understands it, and that’s so important. ‘We’re going on a bear hunt: show me the bear’. You know, show me the bear. If you say ‘What is a bear?’ they don’t quite understand that question yet because they’re not there yet. Make statements; don’t ask them too many questions because they’re not there yet. And follow their lead. Because if they’re doing something, they’re interested in that. Those are my main tips. There’s so many that I can give. 

Reena: [41:58]

That is phenomenal. My goodness, it’s like Masterclass 101 in about 2 minutes. That was super helpful. I think it always helps parents to hear these practical kind of examples you’ve just shared, of the sorts of words to use. And I can completely identify with being the parent who feels like, ‘Well, the more words I chuck at Evy, the more will land’. But it doesn’t work like that. And for us, Makaton proved to be really helpful in encouraging his language, but there was a lot of resistance in my wider family to that, because there was a misconception that by me using Makaton signs for ‘more’ and ‘milk’ and things like that, I was basically discouraging his words. And it doesn’t work like that, does it?

Dipaley Patel: [42:42]

Absolutely not. A lot of parents say that to me. ‘What if I show them pictures and they just keep pointing at things when they want them?’ No, no – because you’re teaching that context base. They’re understanding that language better. Another thing is when you have parents come in and say professionals have told them to stop speaking their language. And I’m like, ‘No, no, no. Don’t do that, because it’s important that you speak your mother tongue, because that’s where they’re going to learn it’. When they go to school, they are going to be exposed to English everywhere. Calling an elephant in English and calling elephant in Gujarati or Punjabi a haathi, whatever it is – it’s the same thing, right? It’s not going to have wings and start flying if you call it something in a different language, it’s going to be the same thing. So yeah, those parents who worry that their children are not speaking because they speak Gujarati at home, or Punjabi at home, or Farsi at home or Albanian or Romanian? Please do not stop speaking to your child in your language. It’s important for them to communicate. Doesn’t matter which language they communicate in, right? It’s important that you do, so that’s another piece of advice I’d give. 

A lot of parents, the first thing they say to me, ‘We’ve stopped speaking Albanian’, and I’m like, ‘No – why?’ And I learned so much, because when I’m doing a session with a child, and a child says something, and they’ll say it in Albanian or Romanian, and then I’ll be like ‘Okay, what? What’s that? What does that mean?’ And then so when I see them next time, I’ll say ‘Oh, did you have your qumësht’? Which is your milk, you know? And their eyes just light up because they think ‘Oh! She said something I understand!’ And that’s what we want for our children. We want them to understand what we say, and by exposing them to different types of languages, that’s what you’re doing. 

I don’t know how Ashley learned French. I haven’t taught her. I came home one day and I said, ‘Ashley’, I said ‘Hello’. She said, ‘Enchanté’. I was like, ‘Come again?’ She can count in French. She could do the days of the week in French. She asked me for something in French once – chicken – and I had to think, ‘What did she ask for?’ I had to remember – my French was not great – but yeah, it was quite funny. And then I realised afterwards that she’d gone to Girls’ Brigade, and one of the ladies there is French. And she must have been speaking to Ashley in French, and I thought, ‘She’s picked that language up so quickly’.

Reena: [45:10]

It’s incredible, isn’t it? And this is a child, who – as you described at the beginning – had quite limited language, and that’s just phenomenal. And I think it’s just testament to you and your love and your commitment to not having these really grandiose plans for how she was going to be, but actually just meeting her where she was, seeing how she developed and then just walking along that path with her and then encouraging her. And it’s so beautiful to see how she’s blossoming, but also the incredible impact it’s had on you and the phenomenal work that you’re doing in society. So yeah, I think we all owe a little debt of gratitude to Ashley.

Dipaley Patel: [45:55]

Oh, bless her. She is my superstar. I remember, at two-and-a-half she wanted to play with somebody and she just went up to them and grabbed them. And that child looked mortified. And I stood there and I felt so sad for her and I thought, ‘I’ve got to open this child’s mind up, and what can I do?’ And I went on a quest. I went on a journey and I’m still on that journey and I’m learning every day. And you know what? I wouldn’t have it any other way right because I think it’s taught me so much. I think I’ve become a different person as well. I’ve become me, and I don’t care about things that used to bother me. I don’t, because there’s so much more important things in my life going on. And I just enjoy every second. Except for when it’s 3 o’clock in the morning – when she gets up and starts doing the square roots. And I’m like, ‘How are you not tired?’ I’m getting tired of just listening to you. She’ll tell a story to herself – The Hungry Caterpillar – and she would do it in order, which fruits…and I’m like ‘No. Please go to sleep’.

Reena:

It’s a bit much at three a.m., isn’t it?

Dipaley Patel:

It is a bit much. You get up in the morning, you can’t even open your eyes yet, but you still gotta get up and get on… the day starts again, right? But no, they’re amazing children. You know – you are a parent to an autistic child.

Reena: [47:26]

Yeah, still at the age of nine – most nights are sleepless. Not sleepless: broken sleep. I wouldn’t trade it in for anything. I’m a better human for it, and what more can one ask for?

Dipaley Patel: [47:45]

Absolutely. This is why I like you; you and I are so similar in so many ways. And no, it’s the journey. Sometimes our children teach us the biggest things in life, you know?

Reena: [47: 58]

Totally. Dipaley, you have been amazing. Thank you so much. I will put hyperlinks to Happy Chatters and all of the other resources Dipaley’s talked about in the show notes. So don’t worry about having to play it back over and over, it will all be there. But I would just like to say a huge thank you for taking the time out today to talk to me about your experience and the phenomenal work you’re doing. 

Dipaley Patel: [48:22]

It’s an absolute pleasure. And you’re amazing. Thank you for having me on. Thank you for thinking me worthy of it.

Reena:

Without a doubt.

Dipaley Patel: 

Oh, bless you.