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.

0:56
Hello, Hi and welcome to our fifth Spotlight session.

1:01
Today we'll be joined by Catherine, an incredible single mum of two.

1:05
She'll be speaking to us about her son Axel, who is autistic and has a DHDA, learning disability and a number of health conditions.

1:16
Catherine has spent the past 12 years sharing her parenting journey on social media and in addition runs parent support groups, provides coaching and counselling and runs much needed workshops.

1:27
She is a truly inspirational advocate for Axel and for disabled and neuro divergent communities.

1:34
She has undoubtedly supported hundreds of parents going through similar experiences, which is why we're so pleased to be speaking to her today.

1:42
Welcome Catherine and thank you so much for joining us today.

1:46
Hi Catherine.

1:47
Hello, we'd love to start by hearing a bit about your family and your son Axel.

1:55
So my youngest is Axel, he's 6 foot and 21 and he has a lot of letters after his name.

2:03
So he is autistic ADHD, he has asthma and eczema.

2:10
He has, should we say, exciting behaviours.

2:14
He has a lot of sensory needs and he has an extraordinary number of foodstuffs that he's allergic to.

2:21
So 7 foodstuffs need to be out of his diet.

2:24
So he has something that is hard to spell called eosinophilic esophagitis that wasn't detected till much later on in his life.

2:32
And it basically meant that for a horribly long time the poor lad had really bad heartburn which would affect his sleep, would affect his ability to concentrate in the day.

2:43
And I did not know that a lot of the foodstuffs he was ingesting were burning him.

2:48
So along with everything else, he was really, really suffering with that.

2:53
And he has a wonderful older sister who has her own diagnosis but is attending university, is about to finish at university.

3:05
She's, shall we say, very verbal young woman, whereas Axel is a nonverbal young man.

3:11
So whilst he had a few words when he was about 3, what I learned about Axel is he's he, he's really not fond of traditional means of communication.

3:21
He has his own telepathy, which he's very happy with.

3:24
And so I'm trying to learn telepathy.

3:28
Catherine, how do you find you?

3:29
Can you communicate with him?

3:31
Like how does how do you get a sense of what his needs and preferences are?

3:34
And so I speak like a, a cat would speak.

3:39
So I speak to him.

3:40
But I mean, I keep it simple, so simple and slightly slow.

3:46
So I'll say, you know, axle shoes off axle.

3:49
We're going to have a bath axle.

3:50
We're going to do this and then we're going to do that that and I can probably do about three things.

3:56
So I speak to him in regular language.

4:00
Sometimes I draw really daft little pecs and I can write words.

4:05
So he can, he can get pictures, he can read pretty well.

4:11
So yeah, I speak to him, draw pictures, etcetera.

4:15
And then he with us.

4:16
I mean, we've tried everything from PEX protocol to go writing Mcaton.

4:22
I mean, everything.

4:23
I mean, we had a conversation just this morning in a meeting.

4:26
What are we going to try next?

4:29
Because really it's difficult.

4:32
He's in a care home setting and a supportive living setting, has been since he was 10.

4:37
And obviously, once people know him really well, you kind of become attuned as you know that that sort of jiggle means probably needs the toilet.

4:46
You know that that sort of Sheen of sweat probably means getting tired.

4:50
You know that whatever it's hunger, it's agitation.

4:55
But if you're new to him, that's, you know, like I suppose most people, it takes a bit to get to know him and care for him in the way that he does need.

5:06
And I know, Captain, that you're a great advocate for Axel and you've got a fantastic Facebook page where you share quite a bit of information about just life of Axel's life and your life being his mum.

5:21
And I just wondered if you could tell us a little bit more about the advocacy work and also a bit about how you've kind of emerged yourself into the autistic community and, and supporting them because, yeah, it's really quite admirable.

5:35
I was, I was going to say a young mum.

5:38
I wasn't really was I was a geriatric mum apparently anyway, so a, a mum and I was in this experience of no sleep and just back-to-back meetings and worries and concerns.

5:52
And I found Facebook was helpful and of course I was signing up to lots of old pages about autism.

5:59
But they were, they were all so jolly and gifty and like, isn't it autism sparkles and autism is a gift.

6:07
And I'm sitting there with, you know, parts of myself and my furniture missing with just so much worry about, you know, and, and it seems like everything I'm trying, it's, it's like sand through my fingers.

6:20
I am not winning this one.

6:21
And I'm thinking, we're going to be in the Asperger's school.

6:24
We're going to be joking about his quirks at his wedding.

6:27
And then, you know, and all my ablest, you know, classical thoughts about getting married and having babies and all that were just, it was just disappearing fast as reality was appearing.

6:42
And I was finding it very tough, very tough.

6:45
And I, so I started writing about my part of what I've come to call the constellation.

6:54
People talk about spectrums and high and low and all that.

6:56
And I think it doesn't fit and I think we still struggle with language, don't we?

7:00
But sort of idea that perhaps it's like a a constellation of humans, like the sort of the ones that are quite similar.

7:08
And there's a lot of them are sort of here.

7:10
And then the slightly and the ones that I'm asking and pretending to be like them are around here.

7:15
And, and then my son can't even pretend to be like, Oh, he doesn't even know what that means.

7:20
You know, my son is, is somewhere and I'm, I'm somewhere.

7:23
So, so we're all in some sort of constellation.

7:25
And so I'm talking from that part of the universe going, I'm not having such a good time.

7:31
This is really tough.

7:35
Just lost another telly.

7:39
So and and finding it helpful because then in the dark, other people are going me too or yeah, I know what that's like.

7:46
And so in a environment where none of my family and none of my friends have anything like this, and they're telling me that I'm making it up or telling me that I'm being dismal or he's fine.

8:00
And I'm like, yes, so not fine.

8:02
We're not fine.

8:04
So I'm getting shut down.

8:05
I'm getting gas lit, basically.

8:07
And so my Facebook page became my little my little safe space.

8:13
I've been writing for 12 years, I think.

8:17
And you do such a good job of advocating and also write, you know, raising your voice for other parents and parents who don't feel able to kind of write like you might or have the confidence to kind of share their views on Facebook and things, whereas you can be that voice for them.

8:31
We wondered if you could share with us maybe a couple of examples of your healthcare experiences with Axel.

8:39
I know that there's been quite a number of appointments over the years, so, but have you got one or two in mind that you'd like to share with us today?

8:47
Yeah.

8:47
I really enjoyed looking at some of your other podcasts.

8:51
And, and so I was grateful to the other mothers I noticed who had spoken.

8:58
And one that stands out for me from early years was, you know, taking my children to the doctors.

9:05
You know, the, the, the frame there is that, you know, your kids sick, so your child is unwell.

9:10
So you're taking them to this strange building amongst loads of other people.

9:14
And on this occasion, it was a particularly dismal winter day.

9:19
And Axel, I can't remember, he had a cold rear of feet.

9:21
I mean, he wasn't good.

9:23
And then the wet waiting room is absolutely packed and the queue is so long and he's expected to wait.

9:34
And so I'm trying to support, I mean, my son is only like 7 at the time and trying to get him to wait.

9:40
And of course he's sick and he doesn't want to be there and he's bored and he wants to move.

9:44
And it was, it was just horrendous.

9:46
So I, and I was trying to hold on to him and I was trying to persuade him.

9:49
I was trying to, you know, bribe him or, you know, whatever.

9:53
And I ended up lying on the ground in the corridor of the entrance to this thing, trying to hang on to my son, thinking what do I do?

10:01
I, you know, he has to see the doctor.

10:03
We need to see him today.

10:05
And yet I can't just force him like this.

10:10
And I was so grateful that this dear woman who was clearly not well herself, she said, listen, why don't you take him outside?

10:18
Because that's where I want you to go in the rain.

10:22
I'm next.

10:23
So I'll go in and then when I come out, I'll wait.

10:26
What's his name?

10:27
I'll wait for his name.

10:28
And then I'll come out and I'll tell you because I was saying, how am I going to when they come out and call him?

10:33
I'm not going to be in the building.

10:35
And so we went outside and bless him, Axel, in his wisdom, wanted to stand in the drain.

10:41
And I just thought, he's so happy in the drain.

10:43
He's standing in the drain with the pouring rain pouring over this boy's feet and shoes, and he's got a cold and a fever.

10:51
I mean, it was insane.

10:52
So my poor son is soaking wet, but he's happy in a drain.

10:56
And so I'm waiting.

10:57
Just come on.

10:59
And eventually this lovely woman came out and she said, Axel, he's been called.

11:02
He's been called.

11:02
Come in.

11:03
So we got to go in and see the doctor and then get the medication and get him home.

11:07
But I did.

11:08
I went, no, this isn't happening ever again.

11:12
And so I did write to the surgery and said, you know, this.

11:16
This can't happen.

11:17
And in their wisdom, they did.

11:19
They put in a thing so that if Axel ever entered the building, this icon would start flashing on the doctor's screen saying Axel is here so that as soon as that person left, Axel would go straight in afterwards.

11:38
Doesn't matter how many people, but you know, for a, a young human like him that cannot could not at the time wait.

11:47
So you know, practices like that.

11:48
So for our human population that gets really anxious or finds it difficult being out, I would really wish for protocols like that to be put in place.

11:59
And indeed, when I go to hospitals, there's all kinds of things that I'm trying to support hospitals to do with a character like Axel.

12:09
Because of course, you know, he is non verbal and quite otherworldly at times.

12:14
And people will talk to me and not.

12:18
So I'll do things like say have you got some paper and a pen?

12:21
And Axel will write his name and so Axel will check himself in.

12:26
And so then we're in.

12:27
And then I'm always talking to the staff, giving them a quick heads up because I don't want to be doing it all for them with Axel.

12:36
So, so I'll sort of say, right, the way you speak to Axel as you say his name and then he knows it's for him.

12:41
And then you say something simple like shoes off or sit down or Axel, can you stand here, heels down because of height, measure weight.

12:49
And it's really lovely to sort of give them the tool kit and then just step back and leave them to it.

12:55
And you see a professional speaking and working with a non verbal human doing all of these tasks.

13:04
It's quite magical.

13:05
I feel really proud of him that, you know, from days where we were all over the place, he and I genuinely think, you know, it's enjoyable for both of them to be engaged in this way.

13:17
And there's still things like counting down instead of counting up.

13:21
Do you know this technique?

13:22
So with a kid like him, if you start, you know, so actually you need to sit down and cover 123.

13:30
You know, you could be counting up to 100.

13:32
He has no idea how long he's got to sit with his hand under the X-ray machine or have his teeth X-rayed or whatever.

13:39
But if you count down South from 20 or 10, you know, think, how long does this need, right?

13:44
It's 10 seconds.

13:45
So Axel, we're going to count down from 10.

13:48
And so he'll sit there knowing that when he gets to zero, it's over.

13:51
He can move.

13:52
And these little techniques are, are priceless for a character like him.

13:57
I mean, it was quite exciting doing the X-rays because that was a classic where this lovely X-ray lady, you know, she was a diminutive little thing and actually is big and he's, he's quite scary.

14:09
And she was like, I don't know how we're going to do this Mum.

14:13
I guess you're going to have to hold his hand down.

14:16
So I'm going to need to get you the like the the X-ray best thing, right?

14:23
And I said, no, let's give this a go, Axel, You can do this, can't you, buddy?

14:27
You can do this.

14:28
And so I was training her saying, right, so Axe, you have to sit there and you have to put your hand there and it's got to stay still under the light, right?

14:36
You got to do this, buddy.

14:37
And I said to her, you know, how many seconds do you need?

14:40
And she said, I don't get that.

14:41
I said, how many seconds do you need from like getting back from there, doing whatever you need to do.

14:45
She goes, I don't know, 20 went fine.

14:47
So I said, right, Axel, we're going to count from 20.

14:50
No, mum and the carer, we're going to be back here with the lady.

14:53
She's doing a special picture of your hand, right?

14:56
You've got to sit really still.

14:57
And so I'm going right now.

14:59
Bless his heart, he's standing there with his hand.

15:00
He's like that and he's just watching my mouth as I countdown still as can be.

15:06
And so she was like, God, that really works, doesn't it?

15:09
And so, you know, we did this a couple of times and we got really good X-rays, could see that there was no glass in there.

15:17
And now we're good to go.

15:18
Let's go and get those bandages on.

15:21
I think that sounds so important, Kevin.

15:23
You mentioned there that it makes a more enjoyable interaction for both Axel and the health professional, but I wonder what else, in what other ways do you think it's important for Axel that he is involved in that communication and that he's kind of spoken to rather than around?

15:43
You know, Axel, Axel's incredibly clever and bright.

15:45
I mean, geez, if he wants something, he will find a way.

15:50
And and, you know, given that he doesn't have the use of English spoken language to his disposable, how clever is he that he's navigating this lifetime without?

16:02
And he's a very popular young man.

16:04
People really love him and he doesn't speak.

16:09
And yet, you know, so I was talking to the care home manager just the other day and she was saying she's really taking the time these days to tell Axel about her weekend or tell him about her week and sees him light up.

16:23
Yes.

16:23
You're not just saying, you know, come on, Axel, when you get in the car, it's time for bath.

16:27
Are you hungry?

16:27
Would you like rice cake?

16:28
You know, sort of these, you know, but actually conversing with him and there is, there's something about him enjoying the world and enjoying people and not being overlooked.

16:40
So I thought that connection's really important for him.

16:42
Connection with people.

16:43
Yeah.

16:44
I mean, goodness, he's made changes.

16:46
I mean, when he was born until about 5:00, I was, I was so lovelorn as a mother because touching him was difficult.

16:59
And I would sit at the dinner table and sort of try to subtly have my knee touch his knee just because I wanted to, because I couldn't hug him and I couldn't.

17:09
And he would as soon as my knee, he he, he'd put it.

17:13
And so for years, I think, I think that Axel just found he was already so overstimulated, he couldn't contain or handle anything more anymore Input.

17:29
So no touch, no eye contact, you know, preferably no talking or involvement with him.

17:35
And he was the most independent tiny human I've ever known.

17:40
Fast forward now, bless him, he's a real He'll sit on your lap.

17:44
He'll come in for a cuddle.

17:46
I mean, you know, if I ask him for a kiss, I get a head **** but I'll take it.

17:51
I was want to go back to your experiences of being in hospital with him and giving that shorthand few, few instructions to the health professional to ease that way of communicating between Axel and them and how simple it really is.

18:09
Just those few things of just just saying his name, just making it shorter and sharper in terms of what words you're using.

18:17
And I'm just curious about the journey that you've taken to get to that point of being able to advocate in that manner, to know exactly what to say to the health professionals.

18:26
Have you gone through a process of experimenting with other things, maybe other resources or kind of hospital passports or things like that?

18:36
How did you land on knowing what's best and how to advocate for him?

18:41
Well, I'm sure every parent will attest to this, including yourselves.

18:47
It, it, it really is.

18:48
You know, everyone says God, that, you know, the kids don't come with a manual.

18:52
And our kids, I mean, you know, the, the, the manual hasn't been written right.

18:58
And so I mean, I, I back in the day, I mean, I attended every parent training group seminar, read the books, did everything I could to try and comprehend what would be helpful, what would be supportive.

19:15
But the end of the day, it's all trial and error, isn't it?

19:19
So I mean, how many play therapies, speech language therapy, occupational therapies clearly lost your path.

19:24
I mean, how many apathies have we tried?

19:27
And you know, to, to, to greater or lesser effect.

19:33
And eventually, you know, it's through trial and error and the years roll by and eventually go, OK, so this voice works and this tone works and this pacing works.

19:43
And so you know, you, you become attuned to him.

19:47
So to be able to translate.

19:49
So I don't think there's a, a magic bullet with it or a thing you can particularly read.

19:53
It's really about as a parent, trusting oneself, trying things out, and eventually finding.

20:01
What does support your child and what they can And so with him, the name is helpful.

20:06
And the slow, slow, simple text.

20:09
And then really importantly, something that a lot of people don't give enough time to is to pause.

20:15
And it is almost like, you know, the information has gone in and then it needs to go.

20:22
And then when it comes, and then the thing happens and so often it gets to hear.

20:29
And then a person will have repeated it because they think he has and it starts again and they repeat it and it's, yeah.

20:34
So just have to stop and wait, let him process and then bang, the shoes are off.

20:40
Bang, he's sitting in the chair.

20:42
So when you're taking an axle to kind of for a healthcare appointment, do you find, do you have to let the healthcare commissions know in advance of his needs and preferences or do you find it's more just like when you're there, you kind of fill them in?

20:55
So dentist specialist dentist.

20:58
So they're very familiar with the cohort of humans that go to that dentist.

21:04
So we don't need to do any prep for the dentist.

21:08
The doctors.

21:09
No, I mean, but his his actual family GPI think is is, you know, when I go in there, he he he with respect to him, he he tucks under me.

21:20
So he'll take the lead from me.

21:22
So if I say we're going to do it this way or, or actually needs to be here, he will do as I say.

21:29
And on we go hospitals again, we go for kinds of check UPS and it's very much a suck it and see on the day, see who we've got.

21:39
So there's kind of limited stuff that you can do to prep the medical teams.

21:43
I just wondered about how you might prep Axel for appointments coming up.

21:50
Actually, you're reminding me that that if you're having an operation, you do have a pre op meeting, don't you?

21:56
So that's the opportunity at which to take Axel and go here's the surgeon or whoever and, and here's Axel my, my things about if, if Axel is going to a hospital and he's going to be put to sleep, then I make sure that we do everything at the same time.

22:11
So bless him.

22:11
The last time he was put to sleep he had an endoscopy.

22:15
I think he had a tooth fixed and they even let me get a very nasty spot out of his ear whilst he was asleep.

22:22
I was like right, everything that we need to be asleep for we'll get it done.

22:27
And so we have.

22:28
And one of the problems I have with the staff is sometimes they don't believe me when I say throw him everything, do not try and cheat him, trick him or hide things from him.

22:40
They don't believe me.

22:41
And this is where the telepathy thing comes in.

22:44
And I've seen it two times out of two where the anaesthetist had the anaesthetic and syringe and they're hiding it behind their back.

22:54
And so Axel's quite relaxed, but then he's got a human coming, you know, with the arm behind the back.

22:59
And immediately he's like, right, I'm out of here.

23:02
No, no, no, what you're doing what, what's, you know, what's behind there.

23:06
And I'd said to him, don't do that, Mary.

23:09
I said, you know, that thing I said about not doing that, I'm like, don't do that, don't do that.

23:16
That really upsets him.

23:18
So you know, Axel needs everything.

23:20
You show him everything.

23:21
And I think that we've had all these years is that I go look, Mummy's got the injection and now it's Axel's turn and we try these things or, you know, mummy's having an X-ray or mummy's having a arm bandaged and then Axel goes second.

23:35
So he sort of witnesses me and almost it's like like it's a cool thing.

23:38
I tried to make out that it's really nice, and then hopefully you'll want the thing.

23:44
Oh, well, you're modelling how to do that, aren't you?

23:46
Would you do that at home or would you do that in situ?

23:49
In, in.

23:50
Yeah.

23:50
If it's something new, I tend to model it on me.

23:54
Yeah.

23:54
Like I got an electric toothbrush, which is really tickly.

23:57
I don't like it, but, you know, I sort of did.

23:59
Look, Mummy's having a tooth and then all its axles turn and I change the head and then he does it.

24:04
So, yeah, everything that is faintly unpleasant, I'll model it on me first.

24:11
And then in terms of preparing Axel, this is where social stories are quite good, quite good, very good.

24:21
And I mean, you know, used for everything.

24:23
I mean, getting Axel to have his haircut at the barbers was a military operation that took weeks.

24:28
So, you know, there was the thing where we went and we met Dave and we looked at the comb, and then we went away.

24:32
And then we had a social story of all the things.

24:34
And the same is true of any operation we would have photographs of.

24:39
I mean, you know, it's the work you're doing.

24:41
So to have as much material as we can to say we're going to the hospital and then it looks like this, and these are the things that are going to be happening and you'll meet these people.

24:53
You might go to sleep.

24:54
And then.

24:55
Yeah.

24:56
And what difference do you think that makes for Axel being able to see things and become a bit familiar with what he's going to experience?

25:05
It's absolutely crucial.

25:07
And, and especially of a, a unique human like him.

25:13
It's so I, I worry that sometimes the poor mood that he can have is because he's just been taken from pillar to post without being considered, you know, going here, we're going to, and it might be nice things, but he, he's just being moved around the planet.

25:30
And so, you know, we are constantly trying to remember and I, and I get it can be difficult.

25:35
You're just saying, well, come on, we've got to go here, go, go there.

25:37
And you know, and sort of taking him as if he's about 3 and he's not, it's 21.

25:41
So, you know, I know the care home is good by sort of giving him options with pecs and saying, Axel, what would you like to do?

25:47
And he'll choose.

25:50
But yeah, for him to be, you know, he has a visual timetable of the week so he can see because and that is important to him.

25:57
So where's he sleeping and, you know, his college on this week and you know, or, you know, or is it the holidays so that he can know what to expect and what to look forward to or not and what's expected of him?

26:13
What, what he's you know, what he's going to be doing.

26:16
You know, it's true for all of us.

26:17
I mean, all students have year planners.

26:19
I have a diary.

26:20
You know, why?

26:21
Why wouldn't he want to know?

26:24
And so social stories just, you know, smooth the wheels of like it not being a shock.

26:29
Oh, we're here and all these strange people.

26:31
It's like, no, we've, we've already primed him.

26:34
Catherine, you've, you've asked you a lot of questions about your experience accessing healthcare with Axel.

26:40
You just you mentioned you're kind of a single parent.

26:42
What happens with your daughter when you've been accessing healthcare with Axel?

26:48
How does that work?

26:51
It's a great question.

26:52
And I and I am concerned that, you know, siblings are spoken about, you know, often they are so marginalised aside on you.

27:00
They're, they're sometimes referred to as glass children.

27:03
I see through them there.

27:05
So not a feature.

27:06
I wish we had more resources, more support groups, more understanding of how to support siblings.

27:15
Obviously, often if Axel was in hospital for an asthma attack or an operation or something, you know, between their father and I, we would work it out.

27:28
But yeah, I am concerned that that siblings really are deserving of more empathy, more care, more, more attention than they get generally.

27:38
And for a long time, she didn't disclose that she had a brother.

27:44
And it wasn't until I did one of my first talks and she saw a video of it where I was really, you know, there's lots of clapping that she thought, oh, it's not such a bad thing.

27:55
And, and then so for her end of year golden time, she was supposed to have 10 minutes, she decided she was going to do a talk like her mum about her brother.

28:05
And the teacher was so cool.

28:07
And he's, he said, I listened to her for a few minutes and I thought, no, the other class has to hear this.

28:13
And so he got the whole of the other cohort in.

28:15
So she had sixty students, all the teaching team, and he let her talk for over an hour and he taught her classmates about this young man, her brother.

28:28
And so then of course they all wanted to meet him and all wanted him to come in the class.

28:32
So we did.

28:33
And he managed to climb up on the side and he walked across all their pastor pictures and crunched a lot of them.

28:43
An important moment for her to be able to express herself and talk about what life had been like for her.

28:51
Catherine, we've just, we've heard a lot amazing things that you're doing to kind of advocate for Axel and kind of help support him.

28:58
What, what do you do?

29:00
How do you kind of look after yourself whilst you're navigating all these healthcare?

29:07
Things are so, so much easier now.

29:11
You know, he's 21, he's in a 24/7 supported living scenario.

29:16
He still comes home one night a week, which I adore.

29:20
And so, you know, things, I mean, yeah, there's always, always something going on.

29:27
But generally things are easier now.

29:29
When he was 107896, that was tough.

29:34
But I knew when that door opened at 3:30, the at some point I was going to get bitten or her and things are going to get broken and I was going to have to protect his sister and the house and carers.

29:49
Carers got bitten as well.

29:51
But that's the honest truth.

29:53
And when I speak to a lot of the parents in my parent group, I mean, I remember doing a poll and everyone was on anti, well, not me actually, but was on antidepressants.

30:03
So antidepressants or overeating or box setting or I mean, just struggling with low mood because I guess if you're in my parent group, it's because you are needing support because you're in a pretty disastrous situation or difficult situation.

30:21
And I, and I did try some sort of Prozac when Axel was born because I knew something was wrong and I couldn't identify it.

30:27
So, you know, the idea was that there was something wrong with me and I thought something wrong with me.

30:31
My son hates me.

30:32
I wonder what's wrong with me.

30:34
I can't work it out, but something's wrong with me.

30:36
I'll take this and try and be more cheerful.

30:38
And then of course, the diagnosis came in and I went off.

30:41
But it was very difficult during, during the really dark years.

30:44
It was such an isolating experience and it's I found it so lonely if I was with my regular friends and family talking about my worries and being shut down or gas lit or told it's not.

30:55
It's like this is really the opposite of helpful.

30:59
I need people that understand and know and can advocate and help me with what is happening rather than trying to tell me it's not Catherine, am I, am I right in thinking that kind of the writing on your Facebook forum and kind of writing and sharing of stories to other parents and why do audience kind of helped you keep your strengths going?

31:21
Totally.

31:22
For me, it was, you know, I'm very clear that I wrote for my benefit and if it was helpful to other people, that was a bonus.

31:30
But yes, I think it was quite central to my mental health.

31:35
You know, I'm awake.

31:36
It's 4:00.

31:37
I've already given Axel the bath, made the evening meal.

31:40
I've done a million things throughout the night.

31:43
And to find a place where I can say, cool, I'm finding this really difficult.

31:48
You know, I've already done all of these things, and I'm exhausted.

31:50
And to think, you know, it's not even Daybreak yet.

31:54
And then, you know, across the globe, other people would be awake anyway.

31:58
But yeah, a place to process what I'm thinking, what I'm feeling.

32:04
Yeah, just processing my thoughts, processing my sadness and also posting all the joyful things.

32:11
Maxwell went through a phase where he he kept putting stuff in my tea.

32:15
So, you know, there's my cup of tea and I don't think.

32:18
And I go to drink it and, you know, there's grapes in it or there's Twiglets in it.

32:23
I find these really weird products at the bottom of the cup.

32:30
I mean, you could not make this life experience out.

32:35
Yeah, I'm really pleased that you hear that you found that support to have that.

32:39
And when you feel more supported while as a parent, when you feel supported, you feel more able to kind of contain your child's difficulties and challenges, which is I'd like one last question, Catherine.

32:53
If you had one wish for how health settings could be, would be different or do things differently for children, what would what would that wish be?

33:04
That all hospitals and all surgeries and all actually dentists perhaps, but they had a specialist.

33:15
Because what I'm experiencing so far is that doctor surgery is a cohort doctors that have all gone through the same medical school and there probably was some module on disability, but not a lot.

33:28
And on they go.

33:29
So I want somebody who's passionate and excited about this particular because you know, you've got your autism diagnosis and then of course, comorbid conditions, right?

33:41
And I'm constantly educating the GP and trying to persuade him.

33:48
And I'm, I'm sort of a novice in this field.

33:51
So, you know, this is something that was literally said yesterday.

33:54
Was it how frustrating it is as a parent?

33:56
You're already and she said, I've only got this experience of this one human in this lifetime and then I'm supposed to be making recommendations.

34:04
I want to see a professional that's got experience of thousands of these and knows and.

34:09
And that's not happening.

34:10
So, yeah, whether it be autism or Down syndrome and heart issues or, you know, whatever the diagnosis are that there's a specialist in every location.

34:20
Catherine, it's been such a pleasure talking to you.

34:22
Thank you so, so much for your time.

34:24
I'm, I'm really quite overwhelmed by just how, how well you have done in advocating for Axel, in connecting with other parents, going through similar things and becoming a massive support, I imagine for them and just, yeah, being an absolutely incredible mum basically.

34:48
So thank you so much for sharing your experiences.

34:50
I, I feel like our listeners are really going to take a lot from what you've shared with us today.

34:55
So thank you so, so much.

34:57
And I, I've come away wanting to meet Axel, the joy that your face shows when despite all the challenges you've been through, you kind of clearly love him and he brings a lot of joy to you when you you were with him and to other people.

35:10
We can hear in the care home as well.

35:12
So that's, that's the play he is.

35:15
He's an absolutely gorgeous young man.

35:17
And, and thank you very much to both of you for your work that you're doing here.

35:22
It it's really important.

35:24
Thank you very much for doing this.

35:28
It has been such a pleasure speaking with Catherine.

35:31
It's abundantly clear that her years of managing medical appointments with Axel have given her some really valuable insights, and we were just so grateful that she was able to share some of these with us today.

35:42
Absolutely.

35:43
And thank you for listening to our fifth Spotlight session.

35:47
And thanks also to the team A Little Journey for helping to bring this podcast together.

35:52
If you want to be notified of new spotlight sessions, please just click subscribe on the Little Journey YouTube channel.

35:59
Thank you.

36:00
Bye.