0:09
Hello, I'm Doctor Megan Hoffman and I'm Doctor Vicky Queralt .

0:15
We're clinical psychologists specialising in child healthcare and we're also mums.

0:21
From our work in hospitals to our chats on the playground, we've encountered countless examples of strength and courage from families facing health issues around their children.

0:32
Whether it's going for a blood test or managing a chronic health condition, we hear about the challenges and obstacles, and we see the parents and caregivers trying to overcome them.

0:42
In this podcast, we want to shine a light on these families and delve into their healthcare stories to discover what's worked for them and what might be helpful for you too.

0:55
Hello, Hi, and welcome to our podcast.

0:59
This week we're continuing to chat to some amazing parents of autistic children.

1:05
As mums of autistic children ourselves, Megan and I are very aware of the challenges that unfamiliar and overwhelming settings can pose for our kids.

1:15
Places like hospitals, dentists, GP surgeries can be incredibly stressful for autistic children and for their families.

1:23
We want to shine a light on the experiences of these families and learn from the challenges they have faced in healthcare settings.

1:31
This is why we are delighted to welcome our guest today, who is an incredible mum of three children and has a wealth of experience with regards to healthcare settings.

1:44
Great.

1:44
So welcome, Caroline, and thank you so much for joining us.

1:47
Thank you.

1:47
Thank you for having me.

1:48
Yeah.

1:48
Hi, Caroline.

1:50
Hello.

1:50
So we wanted to start by just asking you a little bit more about your family, please.

1:57
OK, so I've got three boys, they're ten.

2:00
And sorry, eldest son is 10.

2:03
And then I've got twins who are 4, the very seem to be 5.

2:07
And my eldest son was born early, six weeks early.

2:13
And the twins were born 12 weeks early, so 34 weeks and 28 weeks.

2:17
And so they've all had a bit of a tough journey getting here, but yeah, obviously doing very well now.

2:26
And I believe your eldest has received an autism diagnosis.

2:30
Is that right?

2:31
He has, yeah.

2:32
So he's got the official diagnosis for autism.

2:36
But I do think we need to kind of explore whether there's anything else sort of additional to that.

2:42
And then my youngest, well, my twins, both 2 youngest, one of them has got a diagnosis of cerebral palsy and vision impairment and he's actually awaiting lootism diagnosis as well.

2:54
And the other twin currently I don't believe has any official diagnosis, but I think we'll probably be going down that pathway as well as he gets older.

3:05
When was your eldest, when did he receive his ASD diagnosis, can I ask?

3:10
Quite recently and I actually went and sort of private diagnosis for that because I have been sort of trying to get the NHS diagnosis happening for a while but not really getting anywhere with it.

3:25
So he was actually diagnosed, I think it was back in October last year.

3:30
But obviously that diagnosis is helpful for getting him the right support.

3:36
So for me, it was really important to do that, especially as he's getting older and we're starting to think about secondary school.

3:42
So that year we ended up going to a private paediatrician to get that diagnosis.

3:49
And I was just curious what kind of autism means for you with regards to your eldest?

3:54
Like what does, what does it look like for him?

3:59
So it's really interesting for me actually, because I have all three boys who I believe will get that diagnosis and they're also different with it.

4:06
And you know, it's like everyone says about autism, isn't it?

4:09
It is a spectrum.

4:10
It is a wheel or however you want to think of it, and it is so different for everyone.

4:15
So for my eldest son, really, I think that the way in which it challenges him the most is anxiety.

4:23
So he's incredibly, incredibly anxious, which can be really very upsetting to see as a parent.

4:32
And also sensory, sensory difficulties, They're kind of the two biggest impacts.

4:40
He's bright and he's social.

4:44
He does struggle as he's getting older with some of the things that socially boys his age are wanting to do, such as, you know, sports, which for him are quite a big sensory challenge.

4:56
So it's really impacting him in that way with friendships and just day-to-day being at school.

5:04
So that's all been quite a challenge as he's been getting older.

5:08
And then with my, with my two younger boys.

5:13
So one of the one of the boys, the boy, the little one who's got the cerebral palsy, vision impairment diagnosis, He's, he's quite an interesting little character and he is incredibly advanced with reading and sort of letters and numbers.

5:30
I've heard something called hyperlexia, which is what we think is how he's sort of presenting, which is often quite, quite linked to autism.

5:39
So he can read books, you know, long books himself.

5:43
He's not even 5 yet.

5:45
He can write, he can, he can tell you everything about the planets and how far they are from the sun.

5:52
And he can, you know, tell you all the phases of the moon and he can tell you all the countries of the world and what continents they're in and, you know, all these things.

6:01
But they are sort of massive hyperfocuses for him.

6:05
So he has these real specific hyperfocuses.

6:08
And it's amazing to see.

6:11
And it's really interesting, but it is quite rigid.

6:16
So yeah, he's he's a very special little man and very interesting little man.

6:23
And then his twin brother, I think is a little more like like my eldest in the way he he presents.

6:31
So a bit more of the sensory things happening there.

6:36
But again, all quite different with their sensory needs in terms of sort of sensory seekers or sensory avoiders and what they're looking for.

6:43
And you know, with my, with my young, I don't know how to describe these twins.

6:49
If my younger one they're yeah, it is tricky with the one twin.

6:58
He he's, he's often looking for that sensory input quite a lot.

7:02
And my eldest son is a bit more of an avoider.

7:05
So that can be a bit tricky to navigate at home sometimes where, you know, my younger, younger child is sort of looking for noise and excitement and activity and people.

7:17
And my eldest just wants to hide himself away in a room under a blanket.

7:20
So it's it's a bit of a a bit of a challenge.

7:24
Sounds like you're doing an amazing job, Caroline, like juggling.

7:28
There were three boys, different needs.

7:31
I just wondered if you had any healthcare experiences with them and how that's been for you and your boys.

7:37
Yeah.

7:38
So it's been quite different with all of them again.

7:42
And the twins, because they were born so early, they've had quite a lot of healthcare challenges.

7:47
So we're in and out of hospital a lot with them.

7:50
And my eldest son hasn't Touchwood.

7:53
He's always been quite healthy.

7:56
But last year we did, he did actually get pneumonia and he was in hospital for the best part of a week, which was quite challenging and, and really stressful.

8:05
And my husband and I were really, really worried about that actually and how it would, how he would cope with it because it was such a, such a scary thing for him.

8:17
So, you know, we know with him that when we do anything really, even, you know, go out for the day, we have to give him lots of warning.

8:25
This is what's going to happen.

8:26
This is where we're going.

8:27
This is how long the journey will be, you know, sort of going into a lot of detail about exactly how the day is going to plan out and make sure he feels reassured, I suppose.

8:37
So when he was ill, I mean, there's a few things that sort of came up with this, really.

8:45
So when he was old, first of all, we sort of and and this sort of makes us sound a bit terrible, but didn't really know how I'll he was because he does have such sensory issues where he really does feel pain, you know, much worse than most people.

9:03
And you know, something that might not feel like very much to you or I is really big to him.

9:08
So almost knowing whether the pain he was feeling was really serious or whether it was something, you know, that was quite normal, but to him felt really awful.

9:22
Yes, that was kind of one challenge and justice.

9:26
Staying with that for a moment, Caroline.

9:27
So how, how did you navigate that?

9:30
How did you talk to him about it?

9:31
How did you try and gauge those pain levels?

9:33
Because obviously we know this is something that is very common with autistic children and and adults, that the perception of pain is maybe slightly different or they're hypersensitive or hypersensitive.

9:48
How did you navigate that with your oldest?

9:51
Yeah, So it was really tricky.

9:56
And I don't know, looking back, I don't know if I really did the best job of it.

9:58
And, you know, I absolutely feel guilty about it because because you don't, you don't know.

10:03
And you're so used to someone sort of feeling pain when, you know, it might be sort of a paper cut, which is very unpleasant.

10:12
I'm not belittling that.

10:13
But, you know, could really feel like, you know, your fingers fallen off to him and you know that it's not serious, but you also have the sympathy that it is very painful for him, but at least, you know, not to worry.

10:25
So I think that was really hard for us, sort of not knowing how worried we needed to be about this and how seriously we needed to take it in terms of the care we were trying to get for him.

10:37
So we did, we took him.

10:39
We actually phoned 111 to get their advice and they told us to take him to be seen and they suggested we take him to the nearest urgent care centre, which we did.

10:48
But actually when they got there they said no, he needs to go somewhere bigger because we can't treat him here.

10:55
So then we did take him to the bigger hospital and they were concerned that it might be appendicitis.

11:03
And this was where it became really difficult because I was then worrying that, you know, his reaction to how painful it was might result in him having to have a surgery that he may not need.

11:17
And so I really didn't want him to have to go through that because that would have been incredibly traumatic for him.

11:24
So I spoke to the to the doctors and explained, you know, he does have some sensory processing differences and, you know, he does feel pain more keenly than other people.

11:38
And I just want you to be aware of that because I don't want you to go in there, open him up when he doesn't need that to happen.

11:46
And actually, I think, you know, we were very lucky to have a very understanding doctor.

11:52
And he was understanding both with me and my worries and anxieties about it, but also with my son.

12:00
So he, you know, he sort of reassured me and said, look, I think about 3 doctors had looked at him by this point.

12:07
He said three of us have seen him.

12:10
He needs to be here.

12:11
Something's happening.

12:13
You know, don't worry.

12:14
You're not wasting anyone's time.

12:16
He's in the right place and we won't do anything that's not necessary.

12:20
So he was, you know, he was very good and very understanding.

12:25
You know, whether all doctors would be like that, I don't know.

12:27
Hopefully they would.

12:29
But, well, I think Caroline sounds like you were very good at describing how things were for your eldest son and describing that he has sensory processing differences.

12:40
And that kind of helped the doctors understand as well and kind of provide that reassurance for you or, you know.

12:48
Yeah.

12:49
Yeah.

12:49
I think the thing that I found really hard with that, though, was I almost felt like I was being disloyal to my son.

12:53
Like I didn't want to sort of be belittling his pain because it was real.

12:58
And, you know, whether it was serious or not, he was in a lot of pain.

13:01
So I think there's this sort of conflict as a parent of feeling like you're being sort of, yeah, disloyal, I suppose is, is the word.

13:11
But where you're saying, oh, no, you know, he's feeling this, but it might not be as bad as that.

13:16
And I didn't actually want to be sort of putting him like, yeah, it's balancing, isn't there that your, your, your awareness of his sensory sensitivities, but also like the seriousness of how he's feeling and validating.

13:29
Yeah.

13:29
Not not dismissing.

13:30
I don't want to be dismissing his pain because it was obviously it was there and it was real and and it turned out it was something that did definitely need some some proper support.

13:41
But yeah, it's hard.

13:43
It's hard to sort of find that balance, I think.

13:45
And what happened during the week there in hospital.

13:49
So initially because they had this concern because it was quite well, apparently it's not uncommon, but the way it presented the pneumonia was that he hadn't been ill at all before.

13:58
He didn't have a cough, he didn't have a temperature.

14:00
There was nothing.

14:01
He just had pain in his back and his ribs.

14:04
So we just thought he'd pulled a muscle or something.

14:08
At first we had no idea what was going on, but because it was sort of round the side and sort of coming round the front a little bit, This is why they had the worry about the appendicitis.

14:18
Yeah.

14:19
He had to have investigations to work out exactly what was going on.

14:23
So he had blood tests, ultrasounds, X-rays, chest X-rays.

14:29
So lots of sort of not, not necessarily invasive procedures, but things he'd never come across before.

14:37
And, you know, the blood tests in particular were quite, he was really scared about that.

14:42
So that was something that both myself and my husband were really worried about.

14:49
And, you know, I was the one who stayed with my son.

14:53
But before my husband left, he was saying he was like, what we're going to do if he has to have a blood test.

14:58
And you know, we were having this whole conversation about how we would approach it and how we would prepare him for it and how we would help him through it because we knew it would be really traumatic for him.

15:10
And how did you how did you do it?

15:12
We again, we were very lucky with with this evil.

15:15
He was a really, really lovely doctor and he was very good with he's the numbing cream on him.

15:23
And he talked to him about it and really explained, really went through it and step by step.

15:28
And he put the cream on first before he, you know, before any blood tests were happening.

15:33
And then he sort of proved by pinching, you know, can you feel that?

15:36
And sort of reassured him.

15:37
So I think we were really fortunate in that instance to have a Doctor Who obviously really understood, you know, that he needed to sort of gently explain everything.

15:48
And I think also because my son was feeling so awful, he almost not didn't care, but it almost made him just sort of go along with it much more than perhaps he would have in another situation.

16:00
So if I just had to take him to a blood test that the GP had asked him to have, that would be a different thing again, I think.

16:08
And then with things like the ultrasounds and the chest X-rays.

16:12
So I was Googling the pictures of the equipment that they would use to show him what it would look like.

16:20
And I talked him through what they would do.

16:22
So they'll, you know, obviously having been pregnant, I know.

16:26
I know how the Optus now feels.

16:28
So I was able to actually tell him how it feels.

16:30
And, you know, they might put a bit of pressure and there'll be a cold gel and this is how this is what they'll be doing.

16:35
And so, yeah, again, just being able to really show him those visual pictures of what the equipment would look like, I think made it less scary and explain how it would feel.

16:48
Yeah.

16:49
I'm trying to think of, it Sounds like Caroline, you've bully like trying to prepare him and we're very resourceful at a time when you're all obviously experienced a lot of stress, probably very tired as well.

16:58
But you're thinking about how you can help prepare him and what resources you could access.

17:02
I don't know.

17:03
How did he respond to that?

17:05
Like what did you notice he said a little bit about reduced his anxiety.

17:07
What how do you think?

17:08
How do you think it helped him in other ways?

17:11
Well, I think, you know, just general day-to-day, this is sort of adaptations that we've made in life.

17:15
And it's just what I do now without even really thinking about it.

17:18
You know, I know that like I say, if I'm going, we're going out for the day, I know I have to prepare him for what's what's happening.

17:25
And so I think some of it is just quite natural and it's just how I approach everything with him.

17:31
But it definitely, definitely helps to reduce his anxiety.

17:34
And he was still anxious because it's, you know, you're in the scary environment of a hospital, which also along with, you know, the physical things that are happening to him, it's a totally different environment.

17:47
He's not in his own bed.

17:48
He's got, we've got, you know, you're in a ward with noisy patients and, you know, you don't know all sorts of things going on in there and different smells and different food, which, you know, that was a challenge because he's got real sensory issues around food as well.

18:04
So there was a lot for him to all to deal with all at once.

18:09
So just being able to at least sort of let him know what's coming did help him a little bit.

18:16
But, you know, not totally.

18:17
He was still very anxious and he was still worried.

18:20
Sure.

18:20
Like it might have reduced a bit of uncertainty.

18:23
And yeah.

18:24
What did he do with the food situation?

18:27
I ate his hospital food.

18:29
I bought him stuff I knew he'd eat.

18:34
That sounds like the perfect solution, Caroline.

18:37
I'm just curious about you and all this a little bit more because you spoke about kind of feeling really anxious about what was happening for him physically that you, you know, you weren't so sure and it felt all a bit overwhelming with regards to him needing potentially blood tests and you and your husband coming together and wondering what you were going to do about that.

18:59
I feel like that's something that our listeners would really relate to is your anxiety that you were experiencing about all those things you were having to manage and juggle with regards to preparing him and making sure that the communication with the health professionals was accurate and kind of available.

19:19
I wonder if you feel that kind of those tools that you use with regards to preparing him also helped to serve to kind of calm your anxiety as well or, or what what else happened?

19:30
What else did you do to help your own anxiety?

19:35
I mean, I think when when you're in hospital, I think I sort of don't even think about myself.

19:40
So whatever whatever I'm doing is just because I'm doing it, you know, naturally without actually much thought as to how I'm feeling and sort of thinking I'll cope with it all when I get home.

19:51
But yeah, I mean, definitely being able to sort of prepare him also helps to prepare me, right.

19:57
So, you know, looking at those things together are helpful and.

20:00
I mean, really for my anxiety, seeing him be less anxious is probably the best thing that can help my anxiety.

20:07
So seeing him feeling better because my worry when I'm there is about him and how he's feeling.

20:13
And if he's calmer, then I'm calmer.

20:16
So, you know, it's not so much about doing anything specifically for me.

20:20
It was really just about trying to make him feel happier because that in turn would make me feel happier.

20:26
And, you know, we did things like we had an iPad and we we sort of both squished into his hospital bed and watched a film together and, you know, just tried to have time that was sort of calm and normal in between all the things that were happening.

20:39
But yeah, it was really, really about just making him feel happier.

20:44
Yeah, absolutely.

20:46
I wondered, did he have anything with him at the hospital that helped him to to feel calmer as well?

20:53
Did you bring anything from home that was helpful?

20:56
Yeah, he'll kill me for saying it.

21:00
He has a toy, you know, it's just that he cuddles in bed and it's just like his safety thing.

21:06
And so we had that with us and we brought iPad and, you know what they called Nintendo Switch and things like that.

21:15
So he could just sort of get into a bit of another world, I suppose, in his gaming.

21:21
And they actually at the hospital we were at, had a little room with sort of things, toys, and they actually had an Xbox and a PlayStation, I think, and some books and things.

21:32
So we went and got some books and things like that that were familiar books to him as well, so he could sort of look at those.

21:41
Yeah, I did.

21:43
We brought because it was all because we weren't really expecting to stay in because we didn't really know what was happening.

21:48
So it was a bit rushed, but we just sort of bundled because I'm so used to having these hospital emergency trips.

21:53
Often with the twins, I do tend to just pack a bag with everything.

21:58
So I'd pack like fluffy socks and you know, dressing gown and that kind of thing in there So you have this kind of comforts.

22:06
Can I ask Caroline, it's curious to know you, you mentioned how you had a really good doctor at the start that kind of was really aligned with kind of what you were saying about his sensory preferences and things.

22:15
What did did you know to and how they kind of prepared like did things slowly like put the numbing cream on into things in slow stages.

22:23
Are you aware of anything else during his stay there of any adaptations that the hospital staff made or have they adjusted their communication style in any way?

22:32
You did you notice anything or so with the odd person maybe, but I mean, there were definitely ones.

22:40
And actually this, this is really true of my twin who's who's about to have his assessment for autism.

22:47
Actually, I do find sometimes that there are health professionals who really don't adapt.

22:55
And that's where it can be upsetting actually.

23:00
So, so my twin who has cerebral palsy, he has to go to clinics where they're looking at his body, they're moving his legs, they're moving his ankles.

23:08
And, you know, seeing what he's doing and, you know, I've had appointments before where I've taken him for something and they'll just start taking his shoes off and they'll just start taking his trousers off.

23:17
And I have to stop them because it's, they haven't even told him that they're going to do this.

23:23
It's like he's not even a human, you know, and it's, and, and that's where I get, and probably that's also partly his age.

23:29
And maybe that wouldn't happen with my eldest son, I would hope.

23:34
But still, you know, it's not, it's not OK to do that anyway.

23:38
But for a child who is autistic, you really do need to make sure you're making that extra effort to let them know what's happening.

23:48
So I've unfortunately had those sorts of experiences where I've been quite angry about that and I've had to stop them.

23:55
And I will then tell him this is what's happening.

23:58
We're going to do this.

23:58
Is that OK?

23:59
You know, But we are with my eldest in that in that particular hospital stay, there was a nurse who was very good and I could see he was really making the effort to talk to him and to make sure, you know, he was feeling relaxed.

24:19
And he he was maybe that was just his his nursing style, I don't know.

24:24
But he was very good as well.

24:27
So yeah, I did see it sometimes.

24:28
But then I did also see the other the other side where in the ultrasound, for example, it was very much for doing this job and the person almost gets forgotten and it can be a little bit clinical.

24:42
So they're focusing on doing the job, but almost forgetting about the person there.

24:47
So that's where I was finding I was stepping in again, like I just said, with with taking the shoes off and things.

24:54
I was saying this is what's happening now and this is what's going to happen next.

24:58
And I was sort of having to do that because no one else really was it.

25:03
It feels to me like that must take quite a bit of confidence to advocate for your child to be able to, to say actually stop, please, we're going to do this a different way.

25:14
We kind of.

25:15
Is that something that comes quite naturally to you?

25:16
Do you feel that that's something that as a kind of mum of an autistic son, that that's something actually you've had to learn and grow to be more more?

25:26
Yeah, I think it's something I've learned and grown.

25:28
I don't think it's natural to me at all, actually.

25:30
I think I'm someone who would really sort of rather people just tell me what to do.

25:35
I'll just do it.

25:38
But probably coming from the experiences that I've had with my twins where, you know, unfortunately there have been occasions where they've been quite, quite grossly let down.

25:49
And I've sort of learned that really if you can't stand up for them, then you may not get a very good outcome.

25:57
And not always, obviously, but it has made me a bit more confident really.

26:04
And just remembering, I think sometimes people sort of see medical professionals as you know, knowing it's fonts of all knowledge.

26:12
But actually as a parent, you are the person who knows your child better than anyone else.

26:17
And you know, I may not be a doctor, but I know if my child is very different to how they normally are and you know, severely unwell more than someone who's only just met them.

26:30
So it's a different thing obviously what we're talking about now.

26:34
But I think, you know, it still applies, doesn't it?

26:37
It's knowing that you just have to stand up for your child a bit more.

26:44
It sounds like you've done an amazing job of being able to, if you're not a necessarily a confident person yourself to kind of speak out and say, hang on a minute.

26:52
This doesn't this isn't appropriate.

26:53
You need to be able to slow, you know, slow down your pace and explain to my child what's going to happen.

26:58
I went.

26:58
I just wondered if if you had any advice for other parents or, and parents, autistic children who need hospital healthcare procedures, what advice do you give them if they haven't had as much experience as you?

27:13
I mean, I, I think the main thing for me is that preparation.

27:16
So preparing your child and yourself as much as you possibly can before the before the appointment.

27:25
So one of my children had a sleep study, One of the twins had a sleep study at a hospital a couple of weeks ago.

27:32
And, you know, for that, again, I was Googling pictures of children with sleep studies because I knew he would have lots of what they called, you know, yeah, stuck all over his body, which obviously was going to be very weird for him.

27:48
And so just showing him images of that, We made a bit of a game of it.

27:53
I said he was going to astronaut training for the night.

27:56
And, you know, we sort of loved that.

27:59
He did say his astronaut training wasn't as fun as he thought it was going to be.

28:04
And then I felt it mean.

28:09
But yeah, he, he, I think, you know, having seen those pictures, so he didn't know what to expect.

28:14
Definitely made it less stressful than if he'd just gone in there and all of a sudden being confronted with, no, you're having all these stickers all over your body and you're going to have these straps around your stomach and now you've got to go to sleep.

28:24
So yeah, preparation is absolutely key.

28:28
But then the other thing I think I would say is, is that thing about having confidence to actually speak up for your child, which can be really, really hard.

28:39
Especially like I say, when you're with someone who you think they're the expert because you are the expert in your child and you know what they need to keep them calm.

28:49
And if that's something that you know, might just take a minute longer in that room, then they just have to have an extra minute.

28:57
And, you know, I, I think I do still find it hard.

29:02
I do it, but I do still find it hard.

29:05
But it's so important.

29:08
It's just so important for that child.

29:10
So such good advice.

29:12
Yeah.

29:13
I'm just, I'm just going to know what's the response from healthcare staff that you normally get when you do speak out and share your experiences parenting your child and say, hang on, we just need a bit longer here.

29:23
Explain what's going on.

29:24
What's your response being like, OK, yeah, Normally I think they just kind of, I think obviously it's different depending on the person, but often I think they sort of catch themselves and they sort of think, oh, I've, you know, they sort of realise that they've been bulldozing through it because they're again, thinking with the clinical brain, you know, I need to do these things and that's what I'm doing.

29:50
And then they're sort of forgetting that there's a person there at the centre.

29:53
And sometimes by me stepping in and going, hang on a minute, you know, I'm just going to explain this to him, they'll go, Oh yeah.

29:59
And sort of, you know, they, they're realising it themselves.

30:05
Sometimes they can be a bit, but it's not when you get someone like that.

30:10
And if they are, then, you know, who cares?

30:13
You're quite right, Caroline.

30:18
You've touched on kind of a a few times just your emotional journey with taking your kids to hospital with regards to the anxiety that also the anger that you can feel with people aren't understanding and aren't doing it in a helpful way.

30:32
And also just the the kind of wanting so much to to reduce your son's anxiety, that kind of longing.

30:41
And I just was curious about how you soothe yourself through this entire process.

30:47
I know you said before that you kind of park it until you get home, but I was just wondering kind of what happens when you're at home?

30:54
What do you think about in your day-to-day life?

30:56
Maybe that is about looking after yourself.

31:03
Well, I don't know.

31:06
I, I do Pilates, I think that's probably my thing, My thing that reduces my stress.

31:13
Obviously that's I've taken it further and I actually retrained as a Pilates teacher and now I now I teach Pilates as well.

31:21
But when I go to Pilates myself, that's kind of my time where I don't think about anything else because I'm focusing on what I'm doing, which is really nice because it's a way to switch off.

31:32
But yeah, I think I do sort of need to make time.

31:35
So having for me, having something like like Pilates that I go to and it's a set time where there's a class and I go there and I'm there for an hour.

31:43
It is really important because otherwise it just doesn't happen when I'm at home.

31:48
I'm just not going to suddenly go, oh, I'm just going to have half an hour to just sit down and do nothing.

31:54
And I probably should, but you know, I don't.

31:58
So much easier said than done though, isn't it?

32:00
And yeah, obviously as parents lead very busy lives for the most part, especially when additional needs are concerned.

32:09
And it's it's tough, but it's I love that you've got Pilates in your life that's helping you.

32:15
So Caroline, just for a final question, if you had one wish for how hospitals or medical settings could do things differently for autistic children, what would you wish?

32:30
Oh, just one wish.

32:34
Yeah, that is.

32:34
That's hard.

32:35
I'm just having the one, I think.

32:41
I'm not sure if this is one or if this is sort of sneakily making it it.

32:49
I think it's that that preparation piece.

32:51
So going back to my son's sleep study the other week, we got a letter telling us what was going to happen, but actually that information was really very vague.

33:06
So just being a bit more specific in preparation and actually properly explaining what's going to happen.

33:13
And then, you know, remembering to do that in person as well.

33:18
So just actually really making sure that that person is involved in what's happening and knowing.

33:26
And then it's not, it's not one, it's another one, but just just being aware of, you know, the sensory struggles that they may be having in that environment and, and you know, as much as possible.

33:40
And I know it's really difficult trying to accommodate it and just sort of help make that a bit better.

33:47
So for example, I've had so many times when I've been in hospital and they've been on monitors and the monitor has sort of the probe is wriggled loose and you're just sat there with this monitor just beeping incessantly.

34:01
It's a really stressful noise.

34:02
And just sort of even just saying if that if that happens, you can or you can do this or you can do that and just sort of being aware of all those other stressful things and it is difficult.

34:14
I know it's very busy and they're all very busy.

34:17
But yeah, that's the little things that make a big 1 1/2 things.

34:22
We'll allow it.

34:23
We'll allow it.

34:25
Well, Caroline, this has been so interesting to talk to you about your experiences of healthcare with your children.

34:32
We're so, so grateful for you taking the time to chat with us and, and just share the journeys that you've been on.

34:39
And I, I love especially to hear about the, the points of growth that you have noticed in yourself with regards to being able to be that advocate, to speaking out, to being confident and to just learning along the way what works for your kids to make them help feel more comfortable or less anxious.

34:57
And I hear that preparation is absolutely key.

35:00
And I completely agree with you and from personal and professional experience that that is absolutely such an important point.

35:08
So just thank you so, so much.

35:11
It's been such a pleasure speaking with Caroline today and hearing about the experiences she's had with her children in healthcare settings.

35:19
I found her so inspiring and related to so much of what she was saying.

35:24
Absolutely.

35:25
So thank you to Caroline once again, and thanks to you, our listeners for joining us today.

35:31
And a final thank you to our amazing team at Little Journey for making this podcast possible.

35:36
And if you'd like to find out more about Little Journey and how we're using tech to support all children to better health, then please check us out online.

35:44
Bye for now.

35:45
Bye.