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.

0:43
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.

0:56
Hello and welcome to episode 8 of Little Journey Spotlight Sessions, the last episode of this current series.

1:03
Today we're delighted to be joined by Lizzie.

1:07
Lizzie is mum to a fantastically charismatic 12 year old girl who, like us, has a passion for musical theatre.

1:14
As Lizzie explains, her daughter has received a long list of diagnosis including autism to genetic deletions, global developmental delay and sensory processing disorder.

1:26
In our session today, Lizzie talks to us about the hospital interactions she's had with her daughter and how she's learnt to get the most out of these visits.

1:35
We are really looking forward to sharing her experiences and insights with you.

1:39
Welcome Lizzie.

1:41
So can we just start off today Lizzie, with you telling us just a bit about your family and a little bit about your journey with your daughter?

1:49
So I am married.

1:51
I've been married for oh, 15 years and my small human is now 12.

1:59
So when she was when she was very tiny, she couldn't sit up.

2:08
So she didn't sit up properly until about nine months of age.

2:12
And that was kind of the start of thinking, oh, it's not quite going as we expected it to.

2:19
And then she didn't walk for a long time and then she didn't talk for a long time.

2:24
And I was like, oh, it's not maybe going very well, but I had convinced myself I was like, no, no, I'm doing great.

2:33
This mothering thing, I've got it.

2:36
And I'd said to my husband, you know, because he said to me, I don't, I don't think this is, I don't think she's like developing as, as she should do.

2:43
And I was like, well, you're never even here.

2:46
So how would you know if you're so serious about it, you go and book an appointment.

2:51
So off he trundled and I genuinely was like, oh, he's not going to book an appointment.

2:55
Why?

2:55
All right, everything is fine.

2:57
And he books the appointment.

2:58
And then we got a referral to community paediatrics and the consultant at the time, as I was kind of running him through all of the things that I had noticed, he just kept going.

3:13
And I sort of went, Oh, no, because, you know, that sound means there is something or I've got a suspicion that there might be something because, you know, obviously with consultants, you're not going to get like the exact answer on that day.

3:35
They're going to want to run like a battery of tests.

3:38
They're going to want to see you and all of these different things.

3:41
And that was the first kind of suspicion that I had that everything wasn't quite going the way we thought it was.

3:50
So yeah, that's kind of that's where we started.

3:53
And then it was kind of like 11.

3:57
No, I'm lying.

3:59
It was like another nine years before she was actually diagnosed with the full list that we now have.

4:06
And yeah, it's been, it's been a journey.

4:10
Can you tell us what's on that list, Lizzie?

4:13
Or some, you know, one of the main?

4:14
OK, so it's a very long list.

4:17
It's like 2/3 of an A4 sheet of paper.

4:21
So it's the long list.

4:22
But the main ones for her are so she has 2 genetic deletions, one Fox P2 and one which is unique.

4:33
She has developmental delay.

4:37
So she's about four years academically delayed.

4:41
She's been diagnosed autistic.

4:45
So that's happened in the last sort of 18 months.

4:48
This.

4:50
No, it's not dyspraxia anymore.

4:51
Developmental coordination disorder, discalculia, dyslexia.

4:57
It's just a long list.

4:58
Gosh, that sounds like such an awful lot on your daughter's play and on your play obviously as well.

5:04
And I wonder if you could paint a little bit of a picture for us of kind of how your daughter goes about her everyday life and kind of what life looks like for her.

5:14
So her everyday life, if I could describe it, is a bit like, it's a bit like the bit in Snow White where she's like skipping through a forest and there are birds singing and like all the animals are around her.

5:31
That is her.

5:32
I would say she lives in her own little world and inside her world, that is what happened.

5:40
So other than getting her up in the morning and getting her ready, which can at least half the time does end in some level of like physical 50 cuffs because she doesn't want to get ready and she doesn't want to go once she gets out of the door.

5:56
Sometimes I have to physically get her into the van.

5:59
So she goes to special school.

6:01
So sometimes I have to physically get her in the van and I'm like wrestling like arm bar in there so I can get her in and put the steep just get in.

6:11
So I'm getting her in.

6:12
I'm closing the door and I turn around to the escort and I'm like, have a great day everyone.

6:19
Well done friend.

6:21
We made it and all she trundles and then she arrives at school and she is like good morning everybody, hello, hello, I'm here, I'm here.

6:34
And she just has like real main character energy that is her all over.

6:40
So the tricky bits are very tricky, but the bits that are really nice are just full of laughter and joy and just a lot of misunderstandings that I find very funny.

6:59
So like just that some of the language that she uses and the things that she says are just so joyful to me.

7:05
So it's a real, I said to my husband, it's it's very Jekyll and Hyde.

7:12
You know, it's one side or the other.

7:14
You either get that kind of joyful, exciting, wonderful sing song side of her or she's like a full scale demon.

7:23
There is no in between.

7:27
It's no in between.

7:29
So, yeah, that's what my typical day looks like.

7:32
Oh, and it must be, makes me think, Lizzie, it must be quite challenging for you as a as a mum to see both of those sides.

7:39
And like, no, we're not quite sure what to expect.

7:41
Which one is going to turn up.

7:43
Yeah.

7:43
But absolutely lovely that you, you can really see the joy that you have with her.

7:49
Lizzie, I just wondered if you could talk a little bit about kind of your experience accessing healthcare with your daughter.

7:55
What's up, you and her.

7:59
So in terms of accessing healthcare, we have had to access a huge amount of healthcare to get to this point.

8:08
I think we've had something like 300 different appointments, so that's a huge amount.

8:16
So one thing I will say is this, as much as the NHS gets a bad rap, I am so blessed and so grateful to it every single day because there is no way that we would have been able to personally finance this journey.

8:32
There was just no way.

8:33
So I am very grateful, even though the system isn't the best and even though the system moves very slowly, I'm still grateful though I'm sorry, I'm still very grateful for it.

8:49
But the journey through healthcare has been a real eye opener in terms of we kind of entered into it with this real strong feeling of OK, well, they are the doctor, they know all of the things, OK, they've totally got it.

9:07
We don't have to worry about anything.

9:09
We are just a passenger in this car.

9:14
And as you go through that journey, you learn that you cannot be a passenger.

9:21
You've got to be a Co pilot.

9:22
So you've got to work with your specialist, you've got to work alongside them.

9:27
You've got to turn up ready with your information, with your knowledge, with your questions.

9:33
You have to show up with your paperwork in good order.

9:37
So it's not like a yeah, you, you to make this work, you cannot be passive.

9:45
You have to be very active.

9:46
You have to be really involved and you have to be prepared to be difficult, not rude, you know, because these people, this is their job and they should be able to turn up to their job and be treated with respect and fairly.

10:02
But you are going to have to be prepared to be difficult and to advocate for your child because especially when your child doesn't isn't verbal, not only are you their advocate, you are also their voice.

10:18
So you you showing up in that situation ready is absolutely critical in terms of making the best of that journey.

10:27
Lizzie, it's really insightful to hear you explain it in that way.

10:31
Could you able to give like a specific example where you have had to be like the advocate?

10:37
So with my daughter, one of the things that she, she finds specific types of situations very difficult.

10:50
And so when I would go into appointments with people and I'd be like, listen, I understand that you've got like 16 children to see today.

10:59
And I understand that your clinic is probably already behind because we would always be booked in like the first appointment of the day and they would somehow always be behind.

11:08
So I'd be like, listen, to make life easy for you, here is a potted history of my child.

11:15
This is a summary.

11:16
OK, so you haven't got to be like, oh, I've I have to read this giant stack of paperwork.

11:22
This is a half page summary of the critical information that you need to know about this child A, because it saved me a lot of time having to repeat the same information again and again and again and again.

11:37
And the other thing is because our hospital is a teaching hospital and absolutely rightly, you need junior doctors need to get experience, kind of speak into, speak into parents, dealing with parents, all of these types of things.

11:51
I would like make copies.

11:54
They would be redacted copies, but they would be copies.

11:56
And I'd be like, right here you go.

11:58
So when you have to go and like kind of write up your, your mock notes, you've got something to kind of take with you.

12:05
So the first time that happened, the consultant said, would you like a job?

12:13
He was like, would you like a job?

12:15
I think you'd be great here.

12:16
And I was like, I've kind of got two jobs already.

12:19
So maybe no, but I appreciate your kindness.

12:24
And it's, that's what I mean in terms of you being active, you kind of you, you show up ready.

12:30
It sounds like through your experience of all your healthcare appointments, you learn over that time that actually it's really helpful to have that information just documented on a piece of paper of, of your history and just to pass it over.

12:42
Yeah, it it helps a lot because I think a lot of the time when your child has additional needs, you spend a lot of time explaining to people your child's back story.

12:57
And actually we've got 15 minutes.

13:01
So I would rather spend that 15 minutes actually talking about where are we right now, what are the challenges that we are having right now and how, if at all, can you help us with that rather than doing this long diatribe of a back story?

13:20
And it's not that it isn't relevant, it absolutely is relevant.

13:23
However, in that short time, we haven't got a huge, you know, it's not a huge amount of time to get some quite chunky things dealt with.

13:32
So that was my thing.

13:33
I was like, right, OK, I've got to make sure I'm, you know, making the most of each of these appointments.

13:38
And what would you do for the clinician?

13:40
Like, have you ever thought about using like a hospital passport or those kind of things?

13:43
No, because I think by the time we'd heard about a hospital passport, we'd kind of gotten out of most of the times that we would need to be in hospital.

13:53
So if somebody had told me at the beginning, then I would have been like, yeah, amazing, this is great.

14:00
But I didn't hear about a hospital passport until, I want to say maybe 18 months ago.

14:09
And bearing in mind we'd had 300 and odd appointment, nobody had ever mentioned it.

14:15
What sort of difference do you think it might have made if you had heard about it?

14:18
I think the difference that it might have made is a bit like the summary in that you don't have to keep saying exactly the same thing over and over again.

14:27
Because the hard thing with repeating that story over and over and again is you tend to ad Lib and you tend to kind of like like truncate things.

14:38
But some stuff is more important to different specialists.

14:42
And if you're telling the same story over and over again and you're kind of taking stuff out and you're and you're kind of truncating it, they might miss the thing that's actually relevant to them.

14:53
But also with the hospital passport, it's kind of like your advocate before you get there, isn't it?

15:03
So from a clinician's perspective, they can look at that passport and go, right, OK, so if I want to, you know, speak to this child, this is how I need to kind of speak to them.

15:13
Or actually I need to speak to the parent and kind of but turn to them and ask them the question and then kind of expect the parents answer.

15:19
It's all of those different things that just make the child feel more comfortable and the parent feel more confident.

15:28
And I think, yeah, we, we definitely missed out on having something like that.

15:32
So if you don't have one, definitely get one because it's so helpful to you to just take some of that mental load off in terms of what you have to remember.

15:48
We've heard how you have to take you to how helpful it is to sort of advocate and provide that information of the back story and things when you're now she's got older and she's 12 and I'm just wondering about that age, whether she how she feels about going to the healthcare appointments and how she communicates this.

16:04
Is there a shift from how you communicate for her or support her to her having a bit more autonomy?

16:09
Like yes, yes.

16:11
So she's a lot more demanding now because she can be.

16:17
So we went to, she had to have some dental work done, but because it was a root canal and she would not have tolerated sedation of any description, it had to be done under general anaesthetic.

16:29
So we got to the hospital and we've been asked to do different things.

16:34
So what I'm, you know, said the, the nursing staff would say, OK, we need to do, we need to weigh her, we need to do this, we need to do this.

16:41
So I would say to her, right, my love, we've got three things to do.

16:45
This is the thirst bit.

16:46
So let's go and do that first and then we would do that bit.

16:48
So I would then be kind of breaking down the instructions on her behalf so that she knew this and then this and then this.

16:57
However, when the play therapist arrived, because again, she's been to hospital enough that she understands the different uniforms mean different things.

17:06
So she saw the person come in with the red T-shirt and she was like, excellent, my helper has arrived.

17:14
And so the play therapist arrived and was like, oh, you know, you know, this is what you're having done today and you know, this will.

17:19
And then obviously with explaining the whole thing.

17:21
And then they were kind of talking about it and the play therapist asked her, oh, have you got like a like a favourite like cartoon character or something like that?

17:34
And she reeled off a couple of like what I would call the Super popular ones.

17:41
And obviously my kid went, I want fancy Nancy.

17:46
And the play therapist was like, I'm sorry, who?

17:49
I was like, oh, fancy Nancy.

17:51
She is a ballerina.

17:52
She speaks French.

17:53
It's a show on the Disney Channel, Trollola.

17:56
So off she trundles.

17:57
There's me thinking, we're going to be in trouble here, friends.

18:01
This isn't going to go well because she's going to lose her temper if she doesn't get what she wants.

18:06
And then she comes back with this Fancy Nancy booklet.

18:09
And it was like all the explanation of like what?

18:11
So I don't know how she did it.

18:13
It's obviously like a template that she's got made-up.

18:16
But it was like a fall and all the characters were Fancy Nancy.

18:19
And you like who opened it And you could see like Fancy Nancy stood where they've got like the sedation room and then like with a doctor with a mask on their face and, and she actually like took her step by step through each of the things and it was brilliant.

18:36
It's absolutely brilliant.

18:38
And we took it home with us.

18:40
And I think she's probably still got it somewhere because she loved it.

18:43
That that's amazing.

18:47
Personalised support, isn't it?

18:48
Personalised.

18:49
It does how the procedure is going to be.

18:52
Lizzie, as you're probably aware, we're big on preparation for hospital.

18:58
Can you talk to us a little bit more about how you help to prepare your daughter for all her health care?

19:05
So in terms of preparing, we're quite fortunate.

19:09
Like I said, we've had like 300 odd appointments at different hospitals.

19:14
So she's quite used to going to hospital and she has and I don't understand now I know how it happened, but once it kind of became an ingrained thing, that was it.

19:26
So her process of going to hospital is I don't tell her anything before because question would be, is it now?

19:34
Is it now?

19:35
Is it now on loop until you know, it's time?

19:39
So it would normally be on the morning of this morning we need to go to the hospital.

19:44
Which hospital will we go into this hospital?

19:47
And the reason why she's asking this hospital is because part of her process is when the appointment is finished, she gets to go to the cafe.

19:56
So she understands which hospitals have which cafes, so which cafes she's going to get to.

20:01
So before she's even like left the front door, she knows which hospital it is, which cafe she's going to get to, and most importantly, what she's going to get when she gets to the cafe.

20:13
Like that's the most important conversation that she's going to have all day.

20:17
So she will happily, happily go off to hospital because she loves it there.

20:24
She thinks it's, you know, she thinks it's great.

20:26
And very often we end up having a bit of a meltdown because she doesn't want to go home.

20:33
But that's how much she enjoys being at hospital, which, you know, my husband and I look at each other and we're like, this cannot be real.

20:40
This cannot be happening to us.

20:42
All the other children can't wait to get out of here.

20:44
And she's like, no, don't take me back to that terrible house.

20:47
Just leave me here.

20:49
So we're we are very, very fortunate that she has a very positive association between going to hospital and what happens when you're at hospital.

21:00
Even though she's had some not very nice experiences there, she still has a very positive kind of relationship with that those two things and that saved us massively.

21:12
Is that is that a positive association because of the reward that you?

21:16
I think so.

21:16
I think because she loves a cafe, she loves a cafe.

21:21
She knows probably every cafe in a 15 mile radius from our house and they know her.

21:29
So that's how much we go to the cab.

21:32
But listen, it sounds like you're really playing to her strength, you know?

21:35
You know what she's interested in and what's going to motor.

21:37
Absolutely.

21:39
Curiously, do you know when you said you, you know, to not prepare, We would prepare her on the day like a lot of caregivers and parents will always, you know, if they've got a hospital procedure like an MRI scan or blood draw, Do you know they'll be thinking when should I, when should I tell my child?

21:53
Obviously that changes.

21:55
I don't know a parent knows what their child is like.

21:58
How how do you decide that?

21:59
Like how can we do?

22:00
I have decided that from just it not going well before.

22:07
So we've tried the night before, tomorrow morning when we get up, we're going to do this and then this is going to happen and then this is going to happen.

22:16
But actually what that gives her is more time to worry about it.

22:22
So even though she's happy when she gets there, she isn't necessarily always happy to go.

22:30
So for her, the less time that she has to feel worried about it, that's better for her.

22:36
However, many children need a lot more like prep time.

22:41
So I suppose as parents, it's about understanding how much prep time does this child need to get them through the door?

22:52
Because once you get there, there's so much more help there because the people that are there are professionals.

23:01
They, you know, people that work in paediatrics have got so many like different little things that they know that they're like, oh, I'm just going to do this and I'm going to blow this like glove up or whatever.

23:13
We're going to do all these different things that they do to make children feel more comfortable, less worried, all of that stuff.

23:21
But you don't get that until you get through the doors.

23:24
So it's like as a parent, this gap, what do I need to do to fill that gap so that she turns up, like the child turns up in the best way possible.

23:36
And also that as a parent, you are not like up to here, your nervous system isn't up to here before you turn up.

23:44
Because I think that's the thing, we kind of, we worry very much about the children going to hospital, but as parents, we forget that actually this is quite traumatic for us as well.

23:56
And we tend to go, I'm just going to squash this emotion down into this tiny box and I'll deal with it another day.

24:03
And then you never deal with it another day.

24:05
And then the next time something really tricky happens, you find yourself literally hanging on by your fingertips.

24:12
So it's about, OK, I need to prepare this child, but I also need to prepare myself for this like whatever it is that we've got coming up such an important consideration to to we as parents, we're all about how can easier for our child.

24:28
How can we through this?

24:30
How can we, you know, reduce the worries and the anxiety, But it's all it's so important to consider the parents nervous system as well in it because one, you know, our kids nervous system often mirrors and reflects our own.

24:46
We're anxious, they're more likely to be anxious, but also just about that importance of self-care and the long, long journey.

24:54
You know that this is a a marathon, not a Sprint.

24:57
Absolutely looking after yourself in the long term.

25:00
On that note, would you mind telling us a little bit about what you do to calm that nervous system in face of all these healthcare visits?

25:10
So I think for me, like I said with my little lady, she doesn't need that much prep time, whereas I know that I need prep time.

25:22
So I need to know, OK, I need to leave my house at this time, but I also need to give myself at least because of the time of the appointment, I need to give myself at least another half an hour or more for traffic.

25:39
Because the last thing you want to be doing is feeling like you're running late on the way to an appointment that you've maybe waited a year for.

25:45
Like that just is not a good place to be.

25:48
So I'm that person.

25:50
I'm like doing each of the steps.

25:52
I'm working back each of the steps.

25:54
Have I got her favourite?

25:56
This is her iPad charge.

25:58
Have I got her rear defenders?

26:00
Where is the somatot?

26:02
What's in her bag right now?

26:03
Which snacks have I prepared?

26:05
You know, all of those things I must do before I go to bed that night because if I don't, it won't happen.

26:13
And if I'm not prepared, the whole lot goes out the window.

26:17
Yeah.

26:19
Yeah.

26:20
So preparation's really key for you.

26:21
Yeah, absolutely.

26:24
Especially because like you said, that feeling of like anxiousness in the parent, the children definitely pick up on it.

26:33
And I want her to wake up and be like, oh, we're going to hospital today.

26:36
And she's like, yes, gingerbread man, Pret a Manger, let's do it like she's ready, you know?

26:43
But the only way that I can feel that confident is because I've got all the things I've got.

26:49
Everything has been charged, everything's by the door.

26:51
We're picking stuff up and we're walking out the door and we're going to we're going to get this hospital appointment done and it will be fine because I know that I'm prepared.

27:00
Yeah.

27:01
And I was curious, am I right in thinking that she has to have multiple or repeat blood tests quite regularly?

27:10
So she hasn't.

27:11
So she doesn't have to have repeat, repeat blood tests, but she will completely self destruct when it's anything to do with needles, anything whatsoever.

27:26
So when she's, because she's had to have a couple of surgeries in the run up to each of those surgeries, you obviously have to have bloods done.

27:34
So the first time you had bloods done, I physically held her down on the bed like I had her between my legs.

27:41
I had one of my like a wrestler, one of my legs over her legs holding up her arms so that they could take this blood.

27:48
And it was awful.

27:51
It was an awful experience for her.

27:53
It was a terrible experience for me.

27:57
And I was like, OK, listen, friends, next time we do this, we need to do something different.

28:04
So the next time because I was able to say to them before that next blood draw, listen, last time this is where we ended up.

28:11
So I need you to kind of send me your best team so that we can make this happen.

28:18
So the second time around it was, it wasn't great.

28:22
She was still a bit distressed, but we got it done without having to physically restrain her.

28:28
The third time round again, because I kind of said, well, listen, you sent me your best team, we did XYZ things.

28:35
None of those things worked.

28:36
This is the thing that worked.

28:38
So the third time around we were like, yeah, although it was still distressing for her, we managed to get it done and it didn't take half an hour.

28:46
So now it's kind of it's a bit trial and error.

28:52
And what I will say for other parents to kind of remember is that you don't know and you are absolutely doing your very best.

29:04
So each time you have to go through this process, it will get better because you will learn.

29:09
But you have to give yourself a huge amount of grace because on the days that you don't know the answer and or you haven't been able to advocate or you don't, you aren't prepared because it isn't a situation you've come up against.

29:23
What you will tend to do is come home with like a real weight on your chest.

29:29
Like I failed, like I didn't, I didn't prepare them or I didn't tell the the specialist or I didn't.

29:36
I didn't, I didn't.

29:37
And now look at the situation.

29:40
But actually, one thing I will say about these small humans is they can be very tricksy, but they are very forgiving.

29:49
And you know, you're carrying that horrible weight of guilt around and they're just like skipping through a Meadow.

29:56
So you can only do what you can do.

29:59
You can be be as well prepared as you can, but there will be times when you're not prepared and it won't go to plan or it won't go how you want it to.

30:08
And you have to give yourself grace in those moments because if you don't, the next time something tricky happens, you won't kind of, you'll just spiral further down that kind of like, oh, I'm terrible, I'm a failure, I'm the worst mummy in the world.

30:23
You just keep going further down that thing.

30:25
So yeah, just it isn't always going to go your way, but you will always get better.

30:33
Self compassion, isn't it?

30:34
Absolutely, absolutely.

30:37
Is it can I just go just one one point about the the blood test that she's had and it sounds like it's horrific having to kind of restrain her, but it sounds like you you had a slightly more positive experience each time.

30:48
What was it specifically?

30:50
That was what adjustments were made for her to happen The so the third time lucky, as I refer to it as we went in early.

31:01
She got a special snack, Briar, do you know what I mean?

31:06
We went to the cafe before we even went to go and get our bloods done.

31:10
So she had her gingerbread man.

31:11
She was like, I'm ready, whatever you're going to do, let's do it.

31:15
So we got into the appointment.

31:16
We went in early so that she could have the numbing cream put on.

31:21
So then we went off to the cafe.

31:23
Then we went back after the numbing cream had kind of had enough time to do what it needed to do.

31:30
So then we had the person who was drawing the blood and the play specialist there.

31:39
So the play specialist had got one of her favourite books, so I'd bought that with me.

31:44
So that was the fish who could wish at that time.

31:46
And I still remember that book from cover to cover.

31:49
So the play specialist sat reading the fish that Who Could wish.

31:53
She sat with me on my lap.

31:55
I was able to effectively hold her.

31:59
She was sat on my lap facing that direction.

32:02
I held her with one arm and the play specialist put the book here and her hand was out in the distance and they did what needed to be done.

32:10
Yes, once the needle went in, she was like, hang on a minute, what the Hell's going on around these parts?

32:16
But she, she kind of managed like she got through that.

32:21
And that's kind of the steps that we went through.

32:25
And it is, it's just, it's trial and error.

32:28
It is trial and error, but also, it sounds like you're very prepared, Nizzy.

32:32
You're much more excited.

32:33
I try to be.

32:34
I try to be.

32:35
Yeah.

32:36
I think when we first started out, when stuff wouldn't kind of go the way I expected it to, I found myself very frustrated because I'm a terrible perfectionist.

32:48
And it wasn't, I was frustrated with her.

32:50
I was just frustrated with the situation because I was like, how?

32:54
How have I found myself in this situation?

32:56
Like, other people haven't even seen a doctor with their child before, and mine literally sees one every other week at the moment.

33:05
So I found myself very, very frustrated.

33:07
And I found that really, really hard to take.

33:12
But as we kind of did it more, it was just like, OK, be prepared or be prepared to feel really bad about it.

33:23
So it was kind of like it wasn't an option.

33:26
Yeah.

33:27
It it just wasn't an option not to eat.

33:29
Yeah, Absolutely.

33:31
Yeah.

33:32
What what do you do, Lizzie, to look after yourself and get you through all these challenging moments?

33:37
So before, what I used to do was snack a lot.

33:48
So I used to.

33:49
And it wasn't food because I wasn't hungry.

33:51
It was just like, I just need something.

33:54
I just need something in my life, please.

33:57
So I used to snack a lot.

33:59
So then two kind of big things happening happened.

34:01
Sorry, thing number one, I got into like a coaching group.

34:08
So this person is like their their kind of premise is really around getting ourselves out of arguing with the reality of your situation.

34:20
So rather than saying, ah, this thing is happening to me, this is the worst.

34:23
Why me TA La La you kind of it's about coming to grips with your reality.

34:31
So that helped me massively go into coaching, changed my perspective entirely on having my child.

34:38
So I went from why me?

34:41
What did I ever do to anybody?

34:42
How could this happen to me?

34:44
And all of those feelings are entirely valid, entirely valid.

34:48
And if you're still in that place, please don't feel this is not a judgement on you at all.

34:53
I went from that feeling to going, the universe has done this to me on purpose because I needed this version of a child.

35:05
Because if I'd had a version of a child who was like me, I probably would have repeated the cycles that my parents did in raising me.

35:13
And I probably would have been quite like just very demanding of her.

35:20
Whereas because this is the version of child I have, I can't be that person.

35:25
I can't be like, you're going to have like, you know, you're going to do Saturday schooling, you're going to go to these lessons, you're going to go and do this and you're literally filling up her diary.

35:33
She won't cope.

35:34
And she literally would just be like, absolutely not.

35:37
You're not going to make me.

35:39
So to me, that was the biggest shift for me from going from why me to me for a reason, because she has opened my eyes to so many different things in terms of just being able to say no because I want to say no.

35:57
Like I haven't got a given excuse.

35:59
Like I never had that experience before.

36:02
Whereas she's just like, no, not doing it.

36:05
It brings me no joy.

36:06
I will not.

36:08
And so I'm like, this is great, I love this for us and I just have a lot more time to enjoy life now because of how she is and what she needs.

36:20
So that was big thing, number one.

36:22
But the thing that I think has been a real game changer in terms of how I look after myself and how I value myself has been going to counselling.

36:34
And quite honestly, I genuinely think that if your child has a diagnosis of any description or you know that your child is going to need to be in hospital a lot, I genuinely think counselling should be offered to those parents because you are going to have to rebuild entirely what your perception of parenting is with no tools.

37:05
So going to counselling has given me the tools to rebuild my perception of parenting.

37:12
What do I think?

37:13
What is parenting like?

37:14
What does that look like?

37:16
So rather than that, rather than kind of being trapped in that really sad and awful place where you are comparing what you have to what other people seem to be doing, you're actually like, no, I don't have to worry about that.

37:34
That is great for them.

37:35
That's the life that they have.

37:37
That's the situation that they're in.

37:39
That's their context.

37:40
This is my context.

37:42
And in my context, we are going to be gentle with ourselves.

37:46
We are going to be kind to ourselves.

37:48
We're going to be compassionate with ourselves.

37:50
We're going to value ourselves as much as we value the work that we are doing for these children.

37:59
That's what counsellor has given me that I didn't have before.

38:02
And I'm so grateful to my counsellor because she's a very challenging person, but you never see it coming.

38:10
Like you.

38:10
She's so like so gentle and so quiet.

38:14
And then she kind of all like ask a question.

38:16
You're like, oh, I know.

38:20
I hadn't even considered that.

38:23
And that for me has been just a beautiful experience and and seeing her on a monthly basis is part of my self-care routine that's I'm like this.

38:34
She is part of my budget in terms of what I need to do for me, that she's massive part of that.

38:42
This is great to hear how compassionate you are towards yourself and to see that be so reflective as well and kind of see that I don't know, growth mindset or mindset and just really kind of embrace the life and parenting that you're having to do.

38:57
And we just, I think we are trying to enjoy where we are rather than worrying or feeling sad about what other people have.

39:14
Yeah.

39:16
Not easy, not easy, Not easy.

39:19
I was wondering, just as our final question, Lizzie, if you could tell us if there was one wish that you could have for changing healthcare settings to make them be more appropriate or more supportive for children, what would it be?

39:34
Oh, tricky question to finish on.

39:39
So I so I think if we were going to have something, it would be something for parents.

39:49
And the reason I say that is because the children, as I said before, they turn up at the front door and for the most part, obviously there aren't.

40:00
Because not every doctor is going to be great, and I get that.

40:03
But for the most part, you show up at the front door and it's like, come in, come in, hello.

40:08
And it's like a really like lovely time.

40:11
Whereas for a parent, because you especially if you've never experienced this before, you're basically going into an environment with people who are exceptionally educated and you kind of are a bit in awe.

40:24
So you're not really prepared and you don't know what questions are stupid questions, what questions you should be asking, what information you should know.

40:33
You just don't really know.

40:34
I think that's that's the thing.

40:36
I would wish that we had more of that, there was more support for parents so that they could come and feel confident because the children will always be looked after.

40:48
The difficulty we have is we're not really looking after parents and actually the parent is the person who is answering most of these questions on their children's behalf.

40:57
What sort of support would that look like?

40:59
Give me an example.

41:01
What would that look like?

41:02
I just think I suppose a bit like what you're doing now with little journey in terms of creating and creating information for for people.

41:13
So before you go to hospital, this is what that looks like.

41:16
I think it kind of, I think it's that really the ability to say to yourself as a parent, OK, right, I have to prepare my child for this thing.

41:25
So if I've got a bit of information on what that looks like or what that's going to feel like or what that's going to sound like, then I can say, oh, right.

41:34
So when you go and do this thing, this is what's going to happen.

41:37
And then there'll be a noise, but then after the noise, there'll be this.

41:41
And then, then, then this will happen.

41:43
So it's, I think, I think what you're doing fills that gap in a way because parents are able to look at the thing before they show it to their children and say, right, OK, this is what we're going to do.

41:54
This is what's happening.

41:56
And you can create a level of excitement around it.

42:01
So it's not like this big horrible, scary thing.

42:04
It's like this machine is, you're going to stand in it and it's going to go all the way around your head and it's going to take these pictures of all your teeth.

42:10
And then we're going to be able to look at it afterwards.

42:12
So that kind of stuff is what makes the experience much more something to kind of like be excited for rather than something to be anxious about.

42:24
So it's like preparing the parent, isn't it OK, and helping them and sort of containing any of their worries and because the information there is helping them, that's how it's going to happen.

42:33
So when the parent feels like you can then relay that to the child and have that some element, element of playfulness and excitement.

42:39
And you can be, you can be be excited about something that you feel confident about.

42:45
But if you don't feel confident about it, you're kind of going in blind.

42:49
Your child is also going in blind.

42:51
It's really, really hard.

42:53
It's really hard to do that because you're frightened.

42:59
So you're not, you're, you know, you're like, everything's going to be fine.

43:02
Everything's going to be fine.

43:03
But they can hear your voices like right up here rather than, Oh, my goodness, Oh my goodness, I didn't tell you.

43:10
We are going to hospital today.

43:12
And at hospital, we are going to do this, this and this.

43:15
And we're seeing this doctor and they're probably going to do, you know, do you know what I mean?

43:18
You're making it seem like an adventure.

43:21
The whole thing can feel like an adventure.

43:24
But as parents, you kind of have to feel prepared to do that.

43:28
Lizzie, I could carry on listening to you for hours.

43:32
So many more questions I'd love to ask you, but I think we're going to have to wrap it up, sadly.

43:38
It's been such a pleasure talking to Lizzie and yeah, I'm absolutely bowled over by how much you have learnt on this, this journey you've been on and, and what an amazing mum you are to your to your daughter.

43:51
Thank you.

43:51
So, yeah, thank you so much for speaking to me today.

43:55
It's been really, it's been really wonderful to kind of share all of those things with you more because I think parenting special needs children can be really, really lonely, really lonely and having the ability to maybe not meet, but at least hear that other people are having the same kind of struggles, how they've kind of dealt with it, what they've done to kind of make it a bit easier on themselves.

44:26
It's massive because when I started in this journey, there was nothing.

44:31
There was nothing.

44:33
So I'm super grateful to you both for that because it is it's life changing.

44:41
Having having that feeling that somebody knows what you're going through and somebody is trying to help is massive.

44:49
So yeah, I'm super grateful to both of you and I hope that you keep banging this drum because we need it more than ever now.

44:57
And yeah, I just, I wish you both an epic rest of your Tuesday.

45:02
And yeah, I'm just super excited to hear the end result, which is going to be.

45:06
I'm so excited.

45:07
How's that We?

45:08
Thank you so much, Lizzie.

45:11
We've really enjoyed speaking with Lizzie today and hope you found it helpful to all our listeners.

45:17
Thank you so much for joining us for this series.

45:20
If you'd like to be notified of any future Spotlight sessions, please click subscribe on the Little Journey YouTube channel.

45:27
Bye for now.

45:28
Bye.