[Speaker 2] (0:00 – 6:27)
Hello, this is Anna Kennedy. We’re talking all things autism and what a beautiful sunny day it is here where I am outside the office. So I’m really looking forward to chatting to our guests today but I just wanted to share some really two positive news and then two pieces of information.

So our charity ambassador who’s been a past guest on women’s radio station, the lovely Paula McGowan, she received an OBE. Woohoo! Queen’s honor at the weekend.

How amazing is that? Now Paula is one of my friends, but also one of our overseas charity ambassadors and she has campaigned tirelessly over her son Oliver’s tragic death and it’s been recognized. So as I was saying, you know, it’s bittersweet.

She would obviously love to have Oliver back, but the work that Paula has put in, you know, for the NHS and now the training is being rolled out. So it’s mandatory training in learning disability and autism and it’s designed to give doctors, nurses and allied healthcare professionals and social care staff a better understanding of how to care for people with autism and learning disabilities. NHS England is currently running the pilot scheme and it will eventually be rolled out nationally.

So just to remind you, Paula’s son Oliver died at the age of 18 at Southmead Hospital and a report released last year eventually confirmed that his death was potentially avoidable. His parents have spent years trying to hold health authorities to account and working to prevent other families from having to endure the same loss. He died in November 2016 after doctors administered him anti-psychotic drugs, despite clear instructions that they should not give this due to his intolerance.

Oliver had mild autism, epilepsy and a learning difficulty. So congratulations to Paula and proud to say that she’s a friend and a charity ambassador. Talking about charity ambassadors, we have a new charity ambassador.

Now, Ben is also a past women’s radio station speaker and Ben Pearson is the founder of Big Clothing For You and up there, he’s a serial entrepreneur with a difference. Diagnosed with autism, Ben has used his platform to create inclusive clothing that strives for change. And if you remember, Ben lost 30 stone.

I’ll just say that again. He lost 30 stone. How amazing in that.

And with his collection, also in collaboration with Katie and Harvey Price, he’s created the Harvey Law T-shirt. And after growing up in the care system and battling homelessness at just 17, Ben has faced more challenges than most to share his story and inspire others. Ben has been a frequent guest on my show, and that’s on all things autism and Essex at Gateway Radio.

He’s so excited about being an ambassador for us. And he’s saying he’s used the platform to help others with autism and create change. So watch this space, he’s saying.

Also shared last week on the charity website and on social media, my husband and my the LAMP formula. So I’m just going to read this very quickly. So we created this formula to be positive and consider following our LAMP formula when your son or daughter has been diagnosed on the autism spectrum.

So L stands for learn about the condition and appreciate that it is lifelong. Some days will be good and some days not so good, one day at a time. A stands for advocate for your family and your friends and where possible others also diagnosed with autism.

And don’t forget to advocate strongly for yourself. Sometimes it can be difficult when you’re advocating for yourself. So always take somebody with you.

M, make a difference. This means working in a way that makes things better for members of the autism community. A victory however small it may seem can yield tremendous positive benefits.

And finally, P stands for positive. It’s essential to be positive. I know it’s hard.

Admit there are many challenges and often these can seem overwhelming but work through these challenges. Break them down into small manageable chunks if need be and don’t be afraid to ask for support from other members of the community. There is no shame in asking for help.

So if you want to check it out the LAMP formula, it’s on the charity website. And the last thing that I wanted to share with you, I get so many books that are sent to me to ask for reviews. So I do when I have the time share reviews but now one of my charity champions who’s an avid reader, Beverly Guest, and she’s been a champion of mine for quite some time and has a son on the autism spectrum and she’s also autistic herself.

So she’s been reading a few of the books that I’ve sent to her. So this is one of them, Daddy and the Two Bears. And it’s been written by Gary Anderson.

And what Beverly is saying is she can’t seem to find the right words to do this book the justice she believes it deserves. So she’s going to try to do her best to honor its author Gary, his wife Michelle, and of course Alana and Donna, they’re twins. So just reading very briefly, Parenthood is a journey all of its own and no two journeys will ever be the same.

Most of us have endured sadness and loss of some kind on our own journeys. Yet this loss, the loss that Gary Michelle had was like no other. I cannot even begin to imagine how I would feel in their shoes.

It’s impossible to. No parent should have to lose their child. Having a difficult pregnancy to then lose both of your twins.

It’s just total sadness and heartbreak. Gary writes in this book how he felt throughout and he gives us a very personal insight into his innermost feelings. He relates back to his own childhood and gives us a glimpse of how it has affected his thought process and life.

He discusses mental health so openly and in a way that helps those to understand more, raise key awareness of something so vital. So if you want to read some of the reviews of the books that I’ve sent to Beverly, please check out the charity website, they’re on the website. So it’s www.annaKennedyonline.com.

So my guest today is Charmaine Champ and I met Charmaine on social media. I meet so many, many interesting people and friends on social media. So welcome Charmaine.

[Speaker 1] (6:27 – 6:30)
Thank you. Great to see you.

[Speaker 2] (6:31 – 7:09)
Thank you so much. So just a little bit of background. So Charmaine is a continent sleep and behaviour consultant with over 25 years qualified experience specialising in supporting all children, young people and adults.

Charmaine is a registered nurse in learning disability and has a community nurse specialist background in supporting children and young people, their families, carers, professional organisations and charities internationally. And Charmaine has also written some articles for our charity website. So before we go into your work Charmaine, talk to me about who is Charmaine.

Talk to me about you growing up, where do you live, you know, what’s your background?

[Speaker 1] (7:10 – 8:19)
Yes, so my background, where shall we start? So yeah, I’ve always had a special interest with children with additional needs and learn disability. So it sort of started when I was really, really young and used to babysit for children with additional needs.

And I then, from that, I then sort of started sort of helping out and volunteering in schools, sort of special education needs schools. I then sort of did work placements, and then just thought, do you know what, this is this is where I wanted to be. I wanted to sort of help further.

So I then started, I defined nurse training and qualified in learn disability nursing and just sort of, you know, worked with children and adults and then became community nurse specialist. So the whole sort of time has always been around children with additional needs, really. That’s sort of…

[Speaker 2] (8:19 – 8:30)
Okay, so somebody’s listening in and they’re thinking, I might like to do something like that. So what’s involved in becoming a learning disability nurse? So how long is the course?

What’s involved?

[Speaker 1] (8:31 – 9:24)
Yeah, so it’s a three year course. It’s sort of changed over the years. But when I did it, it was sort of like, you had to do sort of 18 months covering all the different specialities of nursing.

So we did sort of midwifery, adults, children, mental health, as well as learn disability. And then you went into your specialist area. So it just that you sort of had experience and working across the range and all disciplines before you actually specialise.

So yes, I actually did that. We started off, it was based in Colchester in Essex. And then they moved it across to Anglia Polytechnic.

And then it went to Anglia Ruskin. So they changed names quite several times.

[Speaker 2] (9:25 – 9:27)
It was an expensive course to do.

[Speaker 1] (9:28 – 9:51)
And I was actually, I did that straight from sort of college, you know, that type of thing. But when I did my Communitioner specialist practice degree, that was actually funded by my work placement at the time. So that’s sort of doing that.

Yeah.

[Speaker 2] (9:51 – 9:57)
Can you remember your first person that you worked with on the autumn spectrum? Was it a child? Was it an adult?

[Speaker 1] (9:57 – 11:08)
An adult. Yeah. Yeah.

So so in between doing all of that, I also worked in a like a day centre, a residential home as well. And I was trying to sort of help this individual to be able to sort of make their confidence. They were really sort of, they didn’t want to sort of be around people.

But they loved water. That was their sort of thing. So we used to have a, it was like a disability sort of session that we had at the swimming pool.

And this particular young adult, he liked to sort of point at things, he would point and then he’d sort of like, sort of go back inverted. You know, didn’t want to be around people again. So we used to sort of, he used to make up this sort of game of pointing and he was able to actually work his way around, around the swimming pool.

He was then, you know, being able to interact. And it was just, it was great just to see him sort of come out of himself and actually want to sort of be taking part in the activities. And yeah, it was it was great.

Yeah.

[Speaker 2] (11:09 – 11:14)
So let’s talk about your role then. So what is your role currently? What is it that you do?

[Speaker 1] (11:15 – 11:41)
Yeah, so my role now is I specialize in sort of looking at children, young people and adults in a holistic approach. So sort of looking at incorporating physical health needs, communication approaches, environmental sensory needs, behavioral approaches. So this is what I look at the whole sort of, you know, not just one area of need, it’s just trying to look at the whole picture, really.

[Speaker 2] (11:43 – 11:54)
Okay. And are you working as part of a company or are you working on your own? Or what is it?

Just thinking if people are interested in contacting you. So how?

[Speaker 1] (11:55 – 12:27)
I’m actually, I practice as an individual specialist practitioner. But I never sort of feel like I’m just me on my own, because I link in with so many charities and organizations. And sort of support them with their training with their individual, you know, like help out with coffee mornings, evenings and, you know, sort of help out with so many different people.

So although it’s just me, it doesn’t feel like it’s just me, if that makes sense.

[Speaker 2] (12:28 – 12:34)
Lockdown have an effect on your work? And how did you overcome that?

[Speaker 1] (12:35 – 15:30)
Yes, yes, it did mean that work really did change for me. So pre sort of lockdown, I would sort of be attending different charity events, organizations, provide sort of talk sort of face to face. And in fact, from that, I would then have sort of individual work with children and families and young adults.

But obviously, with lockdown, it just meant that all of those interactions sort of obviously stopped. And so then I was sort of trying to sort of think, well, how can I get out there? And, you know, because I knew that the need was still there, families, children still needed help, but it was just trying to see how I could reach reach them.

So I would start doing videos. So I just sort of, I sort of took, you know, different areas of needs that I cover, and just sort of thought I’d just do like a free video, and then sort of putting it out there just to say, you know, if you’ve got a if your child or young person is struggling with whatever it may be, you know, this is where we can sort of start. And this is how you can help sort of thing.

So before I knew I had sort of, I suppose you say a repertoire about 12 different videos that I put together helping people. Where can people find those videos? So they’re actually on my YouTube channel.

And they’re all available, you know, free. So yeah, so that’s just sort of looking at all the different sort of areas that I cover. So it’s sort of looking at the continents, sleep and behavior.

And it’s just sort of looking at where to start and then how to sort of progress with that. So yes, I started doing that. And then, of course, then people sort of started to be aware of that I was still here.

And then I was able to do sort of online coffee mornings, events, evenings, training. And it’s just sort of kind of snowballed from there really. So from sort of just supporting children and families locally, I’m now sort of supporting families in the UK.

And I’ve got families in Italy and Spain at the moment. So it’s just, yeah. I said you’re world and getting to be world known.

I know, I know. It’s just sort of, and it’s just sort of, it’s amazing. And it’s wonderful, but in one sense, and then it’s quite sort of, it just makes you realize that it doesn’t actually matter where you are.

Children and families are facing very similar problems, or difficulties, you know, wherever they may be. So the climate may be, you know, beautiful and wonderful over in sunny Spain, but actually families are still having similar difficulties and maybe not have the support or the, you know, being able to access that.

[Speaker 2] (15:31 – 16:02)
So people listening in, just in case you want to watch any of these free videos, if you just type in Charmaine Champ on Google and it’ll come off YouTube channel. So I believe so. And then also, I was just checking that on Facebook, you’re down as continent’s consultant trainer.

That’s on Facebook. Yes. And then on Instagram, it’s continent’s the consultant trainer again.

And then you’re on LinkedIn as well, I believe. LinkedIn and Health Unlocked.

[Speaker 1] (16:03 – 16:03)
Yes. Okay.

[Speaker 2] (16:04 – 16:19)
And you’ve also published books. So one of them is called Bobby Can Use the Toilet, and then the second book is Bowel and Bladder Assessment Pack, a guide for carers and professionals. So Bobby Can Use the Toilet, is that a book that is available like on Amazon?

[Speaker 1] (16:20 – 16:28)
Yes. So all the books are available either direct from myself or you can get them on Amazon. Yes.

[Speaker 2] (16:28 – 17:17)
Okay. Brilliant. Thank you.

So just for people listening, because obviously, my youngest son, Angelo, has continent’s issues, and it’s always difficult to find someone to speak to, you know, that you can chat about. Now he’s an adult, obviously, we’ve been chatting and hopefully, you know, we can support Angelo. So can you talk to people?

So say, for example, someone’s listening in now and they’re having difficulty. And I also wanted to ask as well, while it’s fresh in my head, would you say that some of the difficulties have increased because of lockdown, because of the anxiety, because obviously, our children pick up on anxiety, parents, you know, things that are going in lockdown, you know, changes of routine, all the rest of it. Would you say that some of the behaviours have got worse, or some of them got better, because there’s not that pressure of them having to go to school?

So what’s your feeling?

[Speaker 1] (17:18 – 18:03)
I think it’s mixture, really. A lot of the families that are coming through, I’ve got sort of one side of it is the families finding it’s really difficult because they haven’t got the routine and the structure of school. But I’d say a large majority of the families are actually saying that their child, they haven’t seen the behaviours because they haven’t got those pressures of going into school, they haven’t got to mask those behaviours, they haven’t got to be a certain way or do things in a certain way, or, you know, do things that they find sensory overloading or over stimulating.

And, you know, it’s a lot sort of calmer and more relaxed within the family home. So it’s sort of, I’ve seen both sides, to be honest.

[Speaker 2] (18:04 – 18:33)
Yeah, because I’ve spoken to quite a few families where they’ve said, oh, you know, it’s so much better at home now, because he hasn’t got the pressure or she hasn’t got the pressure of going to school. So, you know, there isn’t that pressure of having to get up in the morning, get ready to go to school, you know, they’re having some of them are managing to have lessons online, some of them are struggling to have lessons online. And obviously, things have changed where some of the children have gone to school, some of kids are, you know, just doing really well, you know, doing, you know, it’s fine, but some children are finding it a little bit difficult.

[Speaker 1] (18:33 – 18:56)
So, yeah, it’s just I just wanted to yeah, some of the families have found that, you know, when they were going into school, where, you know, they had to sort of, there’s only like a few children in the class, when they were actually going in during the actual lockdown, they found that they were coping with that. But now that the rest of the class have joined them, obviously, the noise level and things that sort of changed again.

[Speaker 2] (18:57 – 19:12)
So, yeah, yeah, apparently recently actually about that. So who are you supporting now? Out of interest, are you supporting children, adults, is it more, you know, is it what sort of age group are you are you looking at?

[Speaker 1] (19:12 – 19:46)
I support all children and young people with or without a diagnosis. So, a lot of the children and families that I support, they’re actually waiting for diagnosis, they’re actually going through that. And they found that often that’s sort of a stumbling block.

So, I actually support children while they’re, you know, they don’t have to have a diagnosis of autism, complex needs, you know, whatever that may be. So, yeah, so I sort of support them wherever they may be in the world, basically, as long as they’ve got an internet connection.

[Speaker 2] (19:48 – 19:56)
So, talk to me about an assessment. So, how does that work? What information is required and what do they have to do?

[Speaker 1] (19:58 – 21:32)
So, when I do assessments, we’re sort of looking at, so it depends on which assessment they would have. So, I provide sort of continence assessment. So, that would be looking at sort of families are looking at potty or toilet training, obviously, depending on the age of a child.

Or if it’s sort of more sort of complex needs, I’d be sort of looking at continence and behaviour assessments. So, that’s sort of all of children or young people or adults where they’re sort of not, they don’t want to go into the toilet area. The families would like to start sort of toilet training, but they’re not quite needing to sort of pass wheeze or poos, that sort of thing.

We sort of look at that. Or if it’s sort of more sort of complex needs, I’d then do a behaviour assessment around that. So, that would sort of be incorporating the continence behaviour and also looking at any other underlying reason why that particular child or young person or adult is finding it difficult to achieve that sort of toilet training success.

So, for some children or young adults, it’s looking at their dietary needs. It could be looking at pain and maybe looking at their sensory needs more in depth. So, it’s sort of lots of different angles with that.

And also, looking at sleep as well, I sort of explore that in depth and I do sleep and behaviour assessments with that.

[Speaker 2] (21:32 – 22:18)
Oh my God, I’ve just owed so much sleep in my life. People that know me, it just doesn’t seem to need a lot of sleep. And I just don’t even know how it functions some days.

We had a particularly bad week last week where Angela’s been going to bed till like half, two, three, four o’clock in the morning and it’s just like, well, yeah. It’s been like 28 years now since it’s been back then. And then my eldest son Patrick, his was like the first six, seven years and then he was fine.

But I think for Patrick, because he was premature, he had a lot of like health problems, but he’s a strong strapping lad now, six foot two. But yeah, just the first sort of six years, it was, I don’t know, I think I was at the back of the queue when God was giving out sleep.

[Speaker 1] (22:20 – 22:57)
But sleep is just one of those things, isn’t it? That it’s just sort of, you just sort of think, yeah, you just get your sleep, you just go to sleep. And you just think, actually, it’s a huge thing.

And for a lot of the children, or children, young adults that I support, it’s just that understanding of that sleep process. And it’s that sort of being able to understand that, you know, getting your Cacadian rhythm, your biological clock, in sync with, you know, being ready to actually sleep at this particular time, whatever time that may be, and then sleeping and then waking up at a particular time. It’s, yeah.

[Speaker 2] (22:59 – 23:43)
Well, lockdowns affected so many people, because, you know, I’ve been speaking to even some of our volunteers, and they find it really difficult to sleep, you know, some of them have bought new beds and what have you. And I think it’s just because of the anxiety that’s surrounding everything that we’ve been through, because it’s been like going on for quite some time now, isn’t it, like a year and a half. And it’s just like, we’ve had a lot of our freedom sort of taken away, you know, I can’t even see my mum for 18 months, and I’m really looking forward to, and my sister, so I’m really looking forward to going to see them in July, just for three days.

But it’s just like, all those sort of things that we’re used to do, and it’s affecting our sleep. So have you had any of those sort of issues, where like maybe the whole family’s not sleeping?

[Speaker 1] (23:43 – 24:00)
Yeah, yeah, I mean, there’s quite a few families that I’m supporting, where it’s not just one child, it’s sort of, you know, several children, and the mum and the dad, that they’re all struggling, but with different areas of it.

[Speaker 2] (24:00 – 24:23)
Yeah, it’s really difficult, it’s really difficult. So let’s talk about an example that you can give to me, so that you have been supporting a child, obviously without names shared, with complex needs to be successful with their toileting. So let’s talk about maybe a girl and a boy, if that’s okay for you.

[Speaker 1] (24:24 – 26:50)
Yeah, yeah, of course. So one sort of example that sort of springs to mind, was a family of a young boy, who was identified as weeing around the house. So he would wee in the lounge, the kitchen, the hallway, the landing bedroom, you know, lots of places around the house, and obviously, when he was sort of younger, the family was sort of found it sort of manageable, they just felt it was one of those stages it was going through.

And obviously, as he was sort of getting older, the family will find it more and more difficult to sort of manage. So part of that sort of role, I was able to do a comprehensive consonants assessment. And within that, I was able to identify what sort of had been sort of happening with a child when they went through potty training, and that sort of thing.

And when the child was younger, they didn’t actually get diagnosed with autism until they were sort of eight or nine. So when they were younger, the child, when they needed the potty, they’d put the potty in the lounge. When they needed the potty and they happened to go and have dinner, they’d have the potty next to the dining table.

Right. Again, upstairs, it was sort of on the landing so that they could reach it wherever they were. And when they’re in the bedroom, it’s in the bedroom.

So what had happened with that particular child, or what the assessment showed was that that child had built up this association, that the lounge equals potty equals we and poo. And that’s where it went. Then obviously, as the child grew up, the potty was then taken away because they were too big for it.

But they had still built up that association that we and poo took place in the lounge, the kitchen, the landing, the bedroom. So that’s why they continued that sort of behaviour, which the family were fortunate as a behaviour. But the reason for that was this understanding and the association.

So my sort of role there was obviously to help with the communication approaches and just to sort of try and help the child visually understand that, you know, no wes and poos take place in the lounge, they take place in the bathroom, toilet area. And it was just sort of helping that child, making it sound very simple. There was a lot more to it.

[Speaker 2] (26:54 – 27:03)
How long did it take? Did the child eventually go to the toilet? Yes, yes, yes.

[Speaker 1] (27:03 – 27:57)
I often find that because often families sort of come to me when they’ve sort of tried out all services. It’s like, you know, I’ve tried going to this particular service, we’ve tried this. And, you know, unfortunately, they don’t seem to find out about me until they’ve tried everything else.

And so by the time they sort of come to me and they’re like, you know, we’ve tried everything, and you know, often they have. But sometimes what’s missing is that sort of communication and that understanding, it’s that behaviour sort of approach, it’s that introducing that new routine and trying to sort of help them visually understand that new routine and not just saying, you know, off you go to the toilet, because they’re not building up the association and the feeling of needing to wee and poo, and actually sitting on the potty or the toilet, transferring that information.

[Speaker 2] (27:57 – 28:18)
So, yeah, so it’s just trying to transfer the information, though, from something alert behaviour to finally get into the toilet. So if you don’t mind me asking, what was the sort of clincher to it that where the penny dropped, if you like, where the child associated, that’s where it needs to be done.

[Speaker 1] (28:18 – 29:27)
Yeah, so with this particular child, it was the communication for them. And they built up, it’s almost like they built up like a repertoire of skills. It’s just that they, you know, they just look to the lounge, lounge equals wee and poo, that’s where it went.

And then once we’d sort of visually sort of had, you know, prompts and, you know, those things that we put in place and to say, you know, no wee and poo in the lounge. And it’s like, well, you know, where’s it going then? And then that’s when we were able to sort of put in place like the visuals for the toilet.

And also it’s sort of recognising that sensation and feeling. So when he was actually going for a wee, he actually had sort of like a folded up piece of kitchen roll within the pan. So he actually felt that witness closer at set periods of time.

So we didn’t have it all the time. But then he sort of built up that association that that witness meant wee and meant I need to go to the toilet.

[Speaker 2] (29:28 – 29:32)
So okay, so if they’ve got minimal verbal skills, is it a lot harder?

[Speaker 1] (29:34 – 31:01)
A lot, I’ll be honest, a lot of the families that I support, their children or young people have minimal verbal skills. It’s just sort of trying to look at it. It’s almost sort of tapping in to what works for that individual, which is why the work I do is very individual.

And so I can sort of give you lots of different examples. But it doesn’t mean to say it would work for every child is different. And it’s just sort of adapting that and just trying to tap in.

And also it’s sort of, it’s looking at the rewards as well. So a lot of families that I support, they would often say, you know, sticker charts don’t work for my child, you know, or young person or adult that, you know, they don’t respond to that. And you’re like, no, but there’s lots of different other, you know, there’s lots of other rewards and incentives is what we’re looking at.

So it’s looking at motivators. And so for us as carers, family professionals, you know, we’re really motivated for our young people to use the toilet. But for our for them, you know, what’s the motivator, we need to sort of tap in to find something that is going to give them that incentive to to want to participate in doing what it is you’re saying.

So sometimes it’s trying to sort of is it’s a combination of lots of different things.

[Speaker 2] (31:02 – 31:10)
So the approach is different for girls and boys then? Or they just depend on the individual? Depends on the individual, really.

[Speaker 1] (31:11 – 31:11)
Okay.

[Speaker 2] (31:11 – 31:21)
All right. And so if it’s an adult, is it harder for myself, is it harder to break the cycle of the behavior because it’s so ingrained?

[Speaker 1] (31:24 – 32:52)
And I wouldn’t, I wouldn’t say it was harder, I would just say that the behavior is more sort of obviously long standing as opposed to say like a four year old who’s had sort of four years of that particular behavior towards compared to maybe a 34 year old who’s had obviously a lot longer to do that. But it isn’t, you know, the approaches and how I sort of, again, it’s just trying to sort of make that, you know, the focus on them and what would work for them. So it’s looking at their communication, it’s looking at, you know, any other underlying physical health needs.

That’s why I sort of really look at those in depth. And also sort of looking environmental factors, looking at motivators, incentives. So often as our young people sort of get older, as children, you know, sort of, we all sort of, there’s lots of sort of things to look forward to, motivators on a daily basis.

And as we sort of get older, sometimes those, our interests become more specialized, we sort of, you know, is then our motivators may be a lot more narrow than maybe they were younger. So it’s just trying to sort of think, looking at those motivators and trying to sort of look at them maybe in a slightly different way to just sort of help move them on.

[Speaker 2] (32:53 – 32:59)
Have you ever had a case where you thought, oh, I don’t know what to do here. I’ve just dropped everything, it’s just not working.

[Speaker 1] (33:02 – 34:14)
I know. I want to say yes, I should say yes, shouldn’t I? No, because I think, and I think that’s sort of why I do the different, you know, I have the different assessment packs and why I use the different assessments because sort of when I’m doing like the, that’s why I try, I love to do the behavior assessment because I’m really trying to look at the underlying reasons because sometimes we just need to really unpack what’s actually surrounding that.

So we might be involved, you know, I might be involved for toileting, but actually there’s some other underlying health needs that really need to be addressed and then the toileting will just flow. It’s just trying to sort of unpack that situation and I almost look at it as being a detective, really. So I think that’s why I sort of come at the end of the assessment process and I’m like, right, yes, and I get really, really excited about sharing it with the family because I’m this is going to work, this is, this is it.

I mean, you should see the pictures. I have people sharing pictures, you know, look, look, thank you.

[Speaker 2] (34:21 – 34:42)
Can we talk about how you support children and adults with complex needs with reference to sleep needs? So we’ve talked about incontinence, so let’s talk about sleep. Let’s talk about children and adults because let me see if we can talk about specific cases who are autism.

[Speaker 1] (34:43 – 40:17)
So I mean, I mean, there’s lots of different families that are supportive, but sort of just to give you an example, the one young girl that I was working with and she, she was diagnosed with autism as well and she was really, really struggling. Her mum was literally, it’s almost like you could describe, she was on her knees. So she was really, really struggling.

A daughter wasn’t sort of, she wouldn’t settle down to sleep every time she tried to approach the bedtime routine. Her daughter would be on the bed, jumping on furniture, jumping off furniture, you know, almost sort of like acrobats type routine, shouting, screaming, you know, all sorts. And that would sort of be going on through till sort of 11, 12 and beyond.

And eventually she’d almost sort of collapse and sleep and she’d stay asleep at say one in the morning and then wake up to start the day at say three in the morning. So, and that was how they were just sort of functioning, you know, very similar to what you were describing actually earlier. Yeah, so that was sort of ongoing.

So with that particular child, obviously did a sleep and behaviour assessment. And one of the things that sort of came out was her sensory needs. And in the day, we were sort of all her behaviour, she was needed to sit, she needed to sit to listen in class, she needed to sit to do her work, she needed, you know, she was needed to sit a lot.

But her actual nature was that she needed to move. She had the sensory, you know, her sensory need was moved, she needed that movement. And she just wasn’t getting it within the day.

So she’d actually had a sensory assessment from the occupational therapist, but unfortunately, the recommendations weren’t actually being put in place. So we were able to sort of review that whole process. And then just see how we could actually promote that sensory diet.

So she actually had that movement needs regularly within the day. So that’s what she got that sort of movement. So rather than bedtime jumping and running around the bed, as opposed to sleeping, she would actually have that movement leading the day.

The other thing was that she couldn’t just lay, she needed to actually have sort of that sort of deep pressure. She needed her mum to be actually cutting her quite tightly, to be able to sleep as well. So it’s looking at her sensory touch as well, sort of looking at that.

And the other thing that we found within the sleep and behavior assessment was her eating and drinking routine. So because she wasn’t able, she wasn’t getting that movement, she then wasn’t able to eat at set times in the day. So she was almost, the parents would then describe it as more of like a graze eater.

So she just sort of, she’d be wondering about when she got home and pick up a bit of food and then wander off. And then maybe like 10, 15 minutes later, she might pick up another bit of food and then wander, and that’s how the day sort of would go. So because she wasn’t having that set breakfast, lunch, evening meal, or having the snacks in between, and she wasn’t having the set drinks as well, she actually, her caucasian rhythm was actually out.

So she, her caucasian rhythm is just sort of about us having set times of eating, drinking, exercising, for us bodies to be able to sort of function effectively. And she wasn’t able to have that. So that’s why we sort of, because we were able to address her sensory needs, she was able to sit for a period of time.

So we tried to do that around her meal times. So then she would actually have her structured meals. And then we were able to obviously put in sort of different activities that she could do while she was in bed.

So she still needed that movement. We wanted to give her some softer fidgets, sort of toys that she could actually have. And sort of introduced different bedtime routines as well.

And she actually was then able to go for, so instead of sort of sleeping at 12 midnight, waking at two in the morning, she actually went from sleeping at eight at night through till waking at seven in the morning. So she phoned up and she was in tears, bless her, because she was just like, I can’t believe it. I can’t believe she’s done this.

So she’s just, yeah, it’s just, it is amazing when, you know, once you sort of, you know, like I said earlier about the behaviour assessment, really trying to unpack everything, looking at all the different reasons. And there were some other underlying physical health reasons as well. She had a urinary tract infection as well, which is reoccurring, which was making it really uncomfortable when she actually laid down.

So that was preventing her from actually being able to sleep as well. So, you know, there’s lots of physical things that we looked at as well. But it’s just, you know, once you sort of unpack it all and then address each of those, then it all just comes together.

[Speaker 2] (40:19 – 40:36)
Have you got any general tips for parents that, you know, that have difficulty with their children sleeping? Is there ways to set up their bedroom or, you know, that sort of thing? What tips, general tips that you could give that might help some of our listeners that are struggling at the minute?

[Speaker 1] (40:37 – 41:56)
Yeah, I mean, I’ve done obviously within the YouTube videos, I sort of go through different step by steps, but just sort of things like making sure we’re making sure the bed’s big enough. And that seems like a really silly question, but, you know, children and young people grow so quickly. And before you know it, you sort of think, yeah, that bed’s fine.

And then before you know it, you know, especially if they’re sort of quite active and moving apart, you don’t realize that actually, you know, maybe the springs have gone or, you know, it’s not actually that comfortable. So it’s just sort of really reviewing the bed and the bedroom. So we’re trying to make sure that the, you know, the light coming in the room, because obviously the light sort of activates our natural melatonin to sort of go to sleep and wake up.

So obviously if it’s too light, then we’re going to be sort of already to start the day as opposed to already to go off to sleep. So, you know, things like that. And trying to sort of really look at our children’s sensory needs as well.

And also sort of looking at our, you know, structured eating and drinking in the day would be a really good start. But like I say, I have put, you know, I’ve put lots of different videos on my room.

[Speaker 2] (41:57 – 42:29)
Yeah, both my sons need to have a fan in their room. I couldn’t think of anything worse than I’m going to find, like, especially now with it being hot weather, but they have it, whether it’s cold, whether it’s hot, it doesn’t matter what the weather is, they like to have the fan. And even like Angelo, you know, I do it to encourage him to speak, but just before, like, leave the bedroom, I purposely don’t turn the fan and he goes, fan on.

Because he needs that, I suppose it’s to blank out the white noise or whatever it is that they can hear. My elder son Patrick, he has it on all the time, every day, every night type of thing.

[Speaker 1] (42:29 – 42:54)
Yeah, I mean, lots of families I support. Yeah, say exactly the same. And we’ve actually been able to move across to like the Dream Egg, the white noise machine, where you can actually pick like different fan noises and different volumes, and it can actually go on all night.

Okay. Or you can have it at set times or, yeah, so like you say, even when it’s not hot, the fan has to be on.

[Speaker 2] (42:55 – 43:04)
Yeah. So yeah, I don’t think of anything worse. I just can’t bear it.

Isn’t it funny how everybody’s got their different is different.

[Speaker 1] (43:04 – 44:00)
Yeah. I mean, like that, I can often say sort of trying to create, you know, like a relaxing, calming environment, so sort of set off to sleep. And I always sort of give an example where a young adult actually that I worked with, and I’m sort of explaining this, and they’re sort of relaxing sort of thing was to actually have the theme tune to, oh, my memory is going back back to the future.

Okay. On repeat throughout the night. That would keep me awake or not.

But it’s just, that’s what it’s about, isn’t it? It’s about being individual for that particular individual. That’s what they needed.

For me, I’m thinking, you know, pan pipes, you know, relaxing, calming, you know, for them, obviously that would, that wouldn’t work. So it’s, yeah.

[Speaker 2] (44:01 – 44:27)
I always remember when I first met my husband, he used to sleep with the light on. That was just like not happening for me. I just couldn’t have it.

But now he’s got used to sleep without the light on. But I just, I couldn’t have, it has to be pitch black for me. No curtains have to be closed.

I have to know that Angelo’s definitely asleep. Now the house has got to be really quiet where they prefer noise. So it’s just, just shows you how we’re all so different from each other.

I was just going to say, are you a good sleeper?

[Speaker 1] (44:28 – 44:42)
Yeah, I mean, for me, I’m very similar to you actually. I have to have it pitch black to the point where I actually have an eye mask now because it’s not dark enough. So yeah, I have the same.

I have to have it.

[Speaker 2] (44:43 – 45:06)
I was just going to ask, so obviously because you’re always dealing with people’s problems, you know, whether it’s sleep, whether it’s to do with incontinence, what do you do to relax? Because obviously we all need to look after our own mental health and wellbeing and with everything that’s going on in the world and these uncertain times, actually, what did you do before lockdown and everything that was going on and what do you do now to relax?

[Speaker 1] (45:08 – 45:52)
Yeah, I said like before lockdown, I would usually go for a walk or always been going out on the bike. It’s always been outdoors for me. I love being outdoors.

I’ve got finding new bike trails off-road with the mountain bike with the family. Yeah, that’s something I’ve always, always enjoyed. And swimming.

Swimming’s always been my sort of full back. I’m going swimming. I’m one of these sort of strange people that I just could keep swimming.

And the only reason I stop is I think I really, really should stop now. I need to stop just because I just, you know, exercise as well, isn’t it?

[Speaker 2] (45:52 – 45:57)
But one thing I can’t do is I can’t swim. So I keep saying I’m going to learn, but I just haven’t got around to it.

[Speaker 1] (45:57 – 47:18)
But I find now that because of the way the sort of work has sort of changed, I’m sort of working sort of later and sort of doing training, not in the evenings and that type of thing now. And, you know, it’s sort of, I’m trying to sort of fit around when families can see me and that sort of thing. So I try to sort of start a little bit later now and try and sort of start the day with a morning swim.

So I sort of do the school drop off and then go for a swim and then I’m ready to sort of start the day. But I’ve kind of taken it to a new level from February this year. So I’ve started doing open water swimming.

So that’s my new sort of, what’s that like? Oh, it’s absolutely amazing, to be honest. So I’m sort of swimming in the sea and the rivers and.

No, no, it’s just it’s absolutely amazing. It’s yeah, it’s just that whole sort of back to nature. I think it is really.

It’s just it’s so calm, especially in the rivers. I think that’s my favorite when sort of swimming along and, you know, if you can almost imagine a really nice walk, but on another level, that’s what swimming water is.

[Speaker 2] (47:19 – 48:59)
If I don’t feel the bottom, I just started panicking if I didn’t feel the bottom of the swimming pool. So that’s what sort of put me off. And with my eldest and Patrick, he couldn’t swim and he was he used to get very, very nervous in water.

And then as soon as somebody suggested goggles, he just loved it. He was in and out, couldn’t get him out of the water. And Angelo is like me.

He just finds it. But I think it’s with Angelo’s sensory difficulties that he’s got. He doesn’t sometimes even like washing his hands, he finds that painful.

It looks like and then other days he’ll wash his hands. It’s absolutely fine. The same with washing his face sometimes and also brushing his teeth.

He’s got too many sensory issues going on that it just impacts him differently on certain days. Like, for example, it’s really, really sunny now. And I’ve shared this before.

Sometimes we might be going for a walk and it’s the same walk that we might do, you know, on a regular basis. But because it’s particularly sunny, it’s particularly hot, he’s finding it really difficult and he’s holding onto my arm as if it’s like the first time we’ve ever done it. So just shows you how it can impact you on different things.

So I always want to ask you about working with adults. So you get more adults that are coming to you now, because there’s not a lot of services out there for adults. It seems to be easier for children, but you know, because I’m always getting questions from parents, or can you help me or even, you know, groups that are meeting up or, you know, peer groups.

It just seems to be an awful lot of stuff out there. I know it’s getting better. But are you working with more adults now?

And what sort of issues are coming to you with?

[Speaker 1] (48:59 – 50:18)
It does seem to be more and more adults are coming through now. I mean, my background, like I said before, is working with children and adults right through to elderly. And I sort of really do cover across the age range, but sort of focused on children, because that’s what initially families are sort of coming through.

That’s what the needs seem to be. But it does seem that more and more adults are coming through. The families are sort of saying that there doesn’t seem to be the help and support out there.

Or it’s just sort of, a lot of services are focused on one particular need. So if it’s sort of consonants, it’s sort of the wetting, or they’ll then go to someone else about, you know, intestinal, you know, the bowel, or if it’s sort of behaviour, it’s just looking at the behaviour. Whereas I try to sort of look at that the whole holistic approach.

And I think that’s, that seems to be what families are really needing at the moment. It’s not just looking at one particular need. You know, I’ve got a lot of families where they’re wanting to look at the continent’s sleep and the behaviour.

It’s the whole situation.

[Speaker 2] (50:19 – 50:49)
Okay, so obviously then you’re going to be busy. Hopefully we can share more information out for you with this going out on the radio. So if people are interested, they can contact Charmaine on continent’s consultant trainer on Facebook, YouTube, the free videos there.

So type in Charmaine Champs, it’s about C-H-A-M-P. Instagram continent’s consultant trainer. What’s Health Unlocked?

What’s that?

[Speaker 1] (50:50 – 51:20)
So there’s an organisation where there’s lots of different, there’s charities on there. There’s obviously myself. And if anybody’s got any queries or questions, I sort of post regularly about sort of, you know, if you’ve got toileting needs, this is my top tips this week, you know, that type of thing.

So I just, all top tips for sleep. I sort of put that information on there. And then families would just sort of, would ask questions about it or if they were further support.

It’s just a sort of another means of getting more support.

[Speaker 2] (51:21 – 51:47)
And just to remind people that you’ve written two books, which are available as well on the website and on Amazon, which is Bobby Can Use the Toilet. And then the second one is Bowel and Bladder Assessment Pack, a guide for carers and parents and professionals. Sorry, guide carers and professionals.

So something new is happening within your organisation. So what is it? What are you doing?

What are you up to?

[Speaker 1] (51:48 – 53:47)
Yeah, there’s several sort of new exciting things that are happening at the moment. So one of the things is finally putting together a website. So it’s something that I’ve always wanted to be able to put together, to be able to have sort of a useful resource for families, to be able to access information.

So sort of a lot of the things that we’ve been talking about today, just so that families could say, you know, I’m not sure about, you know, my child’s poo, you know, what could I do and actually have something there and then that they can take away. And then if you do need further support, then it’s there. And so yeah, so that’s sort of something I’m doing.

And I’m actually sort of developing, because it’s not just consonant, sleep and behaviour that I cover, I’m actually in companies in that all under Clear Steps Consultancy. So sort of moving forward, that’s where you’ll be able to find me as Clear Steps Consultancy. But at the moment, it’s just sort of under the separate titles.

And so that’s one of the finishing touches of, or finishing stages, shall I say, is a new online course, which is going to be launched soon, which is about achieving poo success. Because I have so many families contact me. So that course is obviously poo focus, because I love it.

And so it’s just sort of it’s a joint course with myself looking at the physical sort of area and obviously pouring in all the different approaches that I do, and joining with the sensory sort of side of things. So with myself and Kate over at Therapies, we’re actually jointly putting that course together. So it’s sort of in a modules, we’ve broken it all down.

So you’re going to have like free workbooks, free assessments, free information. So it’s all part of that sort of course.

[Speaker 2] (53:48 – 53:52)
So it’s for families, or for anyone?

[Speaker 1] (53:53 – 53:53)
Yes, yes.

[Speaker 2] (53:55 – 53:59)
It’s up and running, let me know, because we can share it on the charity website.

[Speaker 1] (53:59 – 54:38)
And then the other thing that we’ve put on putting together is a comprehensive toileting kit. So I’m actually putting that together is, it’s sort of more the communication side of things. So I’ve actually linked with the lovely Claire over at Tom tags.

And we’re actually incorporating, like sort of looking at the physical health side of things, as well as the communication and putting it all together to do a really comprehensive toileting kit. So you’d be able to take that away for your child, young person or adult, to really know sort of step by step guidance of how to be successful with toileting.

[Speaker 2] (54:38 – 54:47)
Okay. I can’t wait. It’s really exciting.

Can I ask you something? Why did you want a career in We & Pooh?

[Speaker 1] (54:50 – 55:33)
Do you know, that’s a really good question. I just find it so fascinating. I think it’s because so many people don’t want to talk about it.

But We & Pooh has so much to do with, you know, it has a connection with our sleep. It has a connection with our behaviours, a connection with how we eat or how much we eat. It just is almost like it’s the foundation of us as individuals.

And I just think why we all should be talking about it. So, you know, that’s why I think I’m so passionate about it, really, in a really strange way. People think I should get out more and I could blame it on the lockdown, but I was like it before.

I can’t blame it on that.

[Speaker 2] (55:33 – 55:45)
There are many more people like you around the country, because I’ve never really met. I know there’s some nurses where you can actually go and they have like a clinic, but is there any more people like yourselves that, you know, have an organisation?

[Speaker 1] (55:47 – 56:16)
I haven’t come across independent practitioners, no. So, yeah. And the focus, I suppose, because I work with all children, you sort of get people that, you know, have passionate about we.

But it always seems like, oh, no, we don’t cover Pooh. And you think, how can you not cover Pooh? We’ve really got to look at Pooh.

I think that’s where that sort of passion sort of comes from.

[Speaker 2] (56:16 – 59:02)
I just wanted to remind everyone about the Autumn Hero Awards. So if you’d like to nominate somebody that goes the extra mile within the autumn world, so whether they’re a child, whether they’re an adult, whether they’re a carer, whether there’s someone like Charmaine here who’s supporting families with their weaned Pooh. Or if they’re a professional business reporter that writes particularly well about autism, please send in your entries.

It closes in the first week of September and the actual finalists will be coming along to the Chelsea Harbour Hotel in November. So there’s 12 categories. And then the finalists are three categories for each finalist.

I’m so glad I’m not a judge because we have been inundated with nominations and we have seven judges and you can check out the charity website to see who the judges are who have the difficult choice of choosing three finalists for each category. And then I have two categories that I choose and that is the volunteer of the year within our charity. And then also somebody who I feel that I’ve been watching throughout the year that’s gone that extra mile that I will choose as my champion of the year.

So that’s a really, really lovely event. A three-course meal. We have some of our Oton’s Got Talent performers that perform on a night.

There’s dancing, you name it. And there’s any tissues as well because it’s quite an emotional evening. So if you’re interested, all the information on the charity website, we’re hoping that we’re going to be able to do Oton’s Got Talent and St. Ives in October. So that’s the roadshow. The main show celebrating our 10 years will be in middle of October. So that’s at the Blackfriars Mermaid Theatre in London.

And then obviously the Oton Hero Awards. Keep checking out our workshops as well. We just recently did a workshop with Ben Pearson and Chris Wilde.

So they’re talking about foster care, about social care, about living through the care system. So if you’re interested, check out the YouTube channel, which is Anna Kennedy Online. So I just wanted to say, Charmaine, thank you so much for being my guest today on All Things Autism on women’s radio stations.

It’s been really great talking about me and poo. Thank you so much for inviting me. I really enjoyed it.

Oh, thank you. The time has flown by. So don’t forget everyone.

So check it out. It’s Charmaine Champ, continent consultant trainer on Facebook. She’s on YouTube.

She’s on Instagram. She’s on LinkedIn. And obviously she’s got books and all these exciting projects ahead that she’s going to be involved in.

So I just wanted to say thank you again, Charmaine. I wish you all the best and keep going, keep supporting the families because we need people like you.

[Speaker 1] (59:02 – 59:03)
Oh, thank you.

[Speaker 2] (59:04 – 59:49)
Thank you. So everyone, please stay safe, stay strong, keep going one day at a time. I know it can be tough, but we’ll get there.

And one thing the autism community is good at social media is supporting each other. If you want to follow me, finding out what I’m up to at Anna Kennedy One on Twitter, Anna Kennedy Online on Facebook and at Anna Kennedy OBE on Instagram. And don’t forget to keep checking out the charity website, www.annakennedyonline.com.

And our newsletter is out every quarter. It’s free. So sign yourself up and find out what we’re going on about.

So please enjoy the week. Take care. Bye, everyone.

Thank you. Thank you, Charmaine. Bye.