Spotlight Sessions: Episode 1 – Sally

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

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.

0:56
Hi, and welcome to our very first podcast.

0:59
For this week we're talking to some incredible parents of autistic children.

1:04
As mums of autistic children ourselves, Vicky and I are very aware of how difficult it can be when faced with overwhelming or unpredictable unfamiliar settings with our kids.

1:16
Yes, absolutely.

1:17
Settings such as like hospitals, GB surgeries, dentists are all particularly stressful for families where there is no neuro divergent such as autism.

1:27
So we want to shine a light on the experiences of these families and to learn from the challenges that they faced in healthcare settings.

1:35
This is why we're so pleased to be welcoming our guest today.

1:39
She's an incredible mum of four children and we've been so touched by her experiences and also really inspired by them.

1:47
She's really weathered some big storms and yet somehow we heard how she keeps on going and has so much resilience.

1:54
So we're really pleased she's here with us today.

1:58
Welcome, Sally.

1:58
Thank you so much for joining us.

2:01
Hi.

2:02
Hi.

2:04
Oh, it's great.

2:05
Sally, I just wondered if you could start just by telling us a little bit about your family.

2:11
Yeah.

2:12
So we have a quite big family.

2:15
I've got four children, three boys and one girl.

2:19
The eldest is 22.

2:21
He's a boy.

2:23
The next one is 20.

2:26
He's also a boy.

2:27
Both children were from my first marriage and we we divorced when they were about four and two and I met my husband, now husband.

2:39
I like to be my current husband in when, when a couple of years later we went on to have two more children.

2:48
So we've got a girl who is 15 and a boy who is 14.

2:54
So sort of two and two with a big gap in the middle.

3:00
My youngest son is in the process of being diagnosed and one of the reasons why we are seeking the diagnosis is that he who was off school for eight months last year, it was slightly different circumstances in that that came out of his diagnosis of juvenile idiopathic arthritis, which is basically people are probably more familiar with rheumatoid arthritis when it's diagnosed in childhood.

3:32
It's called Jia.

3:34
So with that he had a sort of a couple of years of complaining of pain.

3:40
We were fobbed off by our GP at the time.

3:43
He said it was brain pains and he had a massive pain episode.

3:46
We took him to A&E and it was following on from that.

3:49
He was diagnosed with the arthritis.

3:51
His mental health sadly then took a massive dive and it was part of his inability to access the appointments to he, he has a very exaggerated pain response.

4:09
And also, you know, that his sister has has been diagnosed that we we've decided to proceed with, with the assessments.

4:16
He's very different actually to my daughter.

4:19
They, they, they present the the very different personalities and, and this is one of the things with autism that, yeah, I think until, I mean, they say, don't they?

4:30
If you've met one autistic person, you've met one autistic person.

4:34
But actually that is not how it is viewed in wider society.

4:40
It has so many sort of stereotypes around it.

4:44
And actually, what I'm coming to conclusions is that my children don't, you know, they don't fit that standard image of a, of a, of a, of a boy rocking or, you know, my youngest is, is very sociable.

5:02
They're both both popular kids.

5:04
They both have friendships.

5:08
They're both slightly impulsive, I think because of ADHD.

5:12
So you may have the potential to step outside boundaries.

5:19
I think that that's a trait which is actually what's making me kick you on your toes.

5:24
We're we're actually, we're all diverse.

5:27
It's it's it's like light pinging on all over the place.

5:32
So yeah, I think with, with my youngest it, it, I didn't really consider it until this hospital thing came up and, and he's really struggled with it.

5:46
So, Sally, could you tell us a little bit about what it's been like for you accessing healthcare with your son?

5:53
But the, the hospital have just been so accommodating.

5:58
I, I don't mean to be critical of the NHS, but I do find it's very hard, you know, once you're in this world, it's very hard to access anything.

6:09
You know, we're paying privately for the OR ultimate ADHD assessment, which we didn't say for my daughter.

6:16
So you, I think that that's the other thing that's worth throwing in mind.

6:20
You do kind of, it's very hard.

6:21
You have to be very resilient as a parent because you can get very disappointed and actually you when you're hitting brick walls and then your child is also refusing it, it's on you and it's exhausting and it's hard.

6:36
And I'm really grateful for the support that the hospital gave me.

6:42
And that is NHS and it's an amazing team.

6:46
You know, as I said before, they, they have so much in place.

6:49
As soon as they saw that he was struggling, they involve the pay therapist.

6:54
So she joins us at the start of every appointment.

6:57
He's too old to play with, but it's just that continuity of, oh, we're going to see, I don't think I can say her name, but we're going to see her.

7:06
She's lovely.

7:07
She gets him.

7:09
There's never any fast, there's never any pressure.

7:12
If he doesn't feel able to do something, they they park it and we pick it up at a later date.

7:19
I mean, All in all, it took five months from diagnosis for him to have his injections.

7:24
And that was because the hospital was so mindful of his mental health and so aware that he needed to get comfortable before, you know, they didn't push him at all.

7:38
Everything was done at his own speed.

7:40
And I think that was really important to build that control when he hadn't had any, you know, with the GP had originally diagnosed it as growing pains.

7:54
And even just we, we don't sit in the waiting room.

7:58
We sit outside and they come and get us.

8:00
And I, you know, it's weird for me because you know, I was I was born in the early 70s.

8:05
I grew up in a different world where you fit in you people don't make accommodation suite.

8:11
You just have to fit in.

8:13
And it's you might experience with him has been completely different.

8:18
They they've just done everything they can to help him.

8:21
I'm really curious about as a parent, how you have allowed this to come about because obviously you can sing the praises of the NHS and those particular people that have made those accommodations.

8:32
But we're very aware that it takes a lot as a parent to advocate for your child to have the confidence to speak up, to be able to be vulnerable enough to, to talk about all the things that are challenging for you as a family and, and for your child.

8:50
Can you tell us a bit about what that was like for you and, and how you kind of found the strength to do that?

9:00
Yeah.

9:01
I, I, I, I don't think I've done a particularly good job, which I think most parents would probably say in this situation.

9:07
It's it's hard.

9:09
It's really hard.

9:11
I think for me, like all this has happened like in the midst of my menopause, which sorry, I know I'm going bear with me, which I think has, you know, life is hard anyway, I'm a breast cancer survivor, so initially I wasn't allowed HRT.

9:29
So I've coped with all of that.

9:32
I think that's had a real effect on my personality anyway.

9:36
So I don't think I did cope very well.

9:38
I mean, now I look back and I think, you know, why didn't I push for a blood test?

9:43
Because had he had a blood test two years previously, it probably would have flagged that he has an autoimmune condition, which is what Jia is.

9:53
But you know what?

9:55
I think I've, I've found it hard.

9:58
I find it hard all the time.

10:00
I find appointments really hard.

10:03
I, I've actually, I used to do them all on my own.

10:05
My husband has, you know, a big important job.

10:11
And actually I've had to say to him, no, I need, I need you.

10:14
I need you to come with me.

10:15
I need that support to get him through this system.

10:19
And that's, that's really amazing, you know, making that realisation about what I need and just it, it, I find the whole thing very tiring.

10:31
It's because people just don't understand.

10:32
People don't understand what it's like having, you know, diverse children.

10:36
This, this is one of the things that's helped me so much is being a member on groups.

10:42
You know, this is, this is what Facebook to me is all about.

10:45
It's, it's about connecting with other people in the same situation, hearing their stories, hearing what they've done.

10:53
And I'm, I'm so grateful for those organisations as well.

10:59
And it's, it's getting back, isn't it?

11:01
It's, it's, it's, it's trying to, you know, when you're further down the road, it's helping somebody who, who's at the start of their journey and, you know, trying to find the information, trying to find.

11:14
Yeah.

11:14
I mean, I'm really struck there, Sally, by speaking about how challenging you have found it personally and how you feel like you didn't cope along the way.

11:23
But how much growth there.

11:25
Sounds like there has been from that beginning stage of learning and being curious about his potential neurodivergence in the face of so much else going on and finding the strength to ask for support from your partner and from the people around you.

11:41
And, and I'm curious, you know, that I've come here quite a bit of kind of self criticism in terms of what you could have done differently.

11:48
But the outcome was that all those adaptations that the team made and that has come from you, you know, as much as it came from maybe their realisation, but it came from you being there and kind of and helping it along its way.

12:05
So it sounds, you know, I'm, it's resonating with my own experiences of starting off just so ignorant about every, all about my daughter's needs and about what I can ask for from the environment.

12:20
And, and it just been such a long, tricky journey to get to a point where you feel more confident in advocating for them and knowing what's OK to push for.

12:30
And, and I think when it comes to healthcare settings, what I've encountered through my work and personal experiences, that confidence it takes to to talk to the health professionals in that way.

12:42
It's it's something that maybe comes with time, with a lot of time with a lot of support just to be able to ask those questions.

12:53
And it sounds like, you know, you've, you've got to a place that you're a lot more comfortable with that was that, is that right?

12:59
Yeah, I, I definitely think so.

13:01
I think, I think though, actually the hospital helped me.

13:04
I think actually they empowered me by their own acknowledgement that it was difficult for him.

13:11
So I never felt like we were a burden or, you know, a problematic family.

13:18
I just felt like they, they understand my son.

13:22
That's really encouraging to hear.

13:23
Sally, I understand your son had an MRI experience.

13:28
Would you mind telling us a little bit about that, please?

13:31
Oh, yeah.

13:33
I just wanted to give you a sort of, you know, a practical example of what, what they did.

13:38
So he was nervous about it.

13:39
And actually, an MRI is a, is a weird thing, isn't it?

13:45
You know, because it, because it is it, you know, it can be claustrophobic.

13:49
I know for people and the noise and everything and they sent him videos in advance so he could watch a video of it.

14:00
Then we attended the hospital not to have the MRI done, but just have a look at the MRI machine.

14:07
So he was able to see it.

14:10
I was able to be in in with him when he had the appointment.

14:15
You know, they took much more kind of care over what he could listen to.

14:19
I mean, I've, I've had Mris myself and it's just, you know, it's kind of like, oh, just put the radio on, you know.

14:25
But they were much, I don't know, they were more, they kind of gave him the freedom to be much more specific about his choice.

14:31
You know, they were, they were just great.

14:33
And at every stage, there's no pressure.

14:35
There's no, there's no, well, come on, you've got this appointment, this is an NHS appointment.

14:40
You need to make it.

14:41
There's a real understanding that, OK, some things he's not going to be able to manage him at that time.

14:47
It doesn't mean he won't later on, but perhaps he won't.

14:52
He did manage to have his Mris.

14:55
He's got some more in April, which I know he's already worried about because unfortunately his back is aching.

15:03
So they they had to check his whole spine for arthritis.

15:07
So it will be more intrusive as well because he, he will be fully in the machine.

15:14
So, you know, it's again, we, we, we'll go through the videos again.

15:19
We, I won't probably take him in advance see the machine because he's seen it and he's been in it.

15:24
But it's just, you know, kind of drip feeding and preparation and that sort of visual of what was going to happen and giving him autonomy and control about doing things at his own pace and sort of personalising his journey.

15:39
And that preparation was really helpful for him and sort of put him at ease.

15:43
And he managed to have the MRI, which is amazing.

15:47
Yeah.

15:48
And he would be, I was going to say the, the treatment for the arthritis at his stage.

15:53
I mean, he's, he's lucky.

15:54
He actually works like he's lucky.

15:56
He's not lucky because it's just crap having it.

15:58
But he's not as badly affected as other people, but having the injections, you know, so he's had steroid injections into both knees and he did that under local anaesthetic, which is amazing.

16:14
Wow.

16:15
You know, at one point he was thinking he would have to go under general because he, he always has this strange pain response.

16:24
Like I said, I mentioned it before, it's he feel more deeply than than one would expect, which I, I don't I, I guess that is, is a sensory thing.

16:37
It probably is something a lot of neurodivergent children have.

16:42
Yes, yeah, it's something that we're aware of, aware of with a psychologist.

16:46
And obviously the interception and kind of what they're able to sense within their bodies can be, can be hypersensitive or hypersensitive, but also communicating about pain.

17:00
And it sounds like it, it sounds like your son can communicate well, but it's a different experience to how other people might experience it.

17:09
And we know that other parents might find might struggle to get their child to actually be able to describe the pain or where the pain is or kind of how severe it is.

17:20
And these are quite significant challenges when you're trying to explain to a healthcare professional what help is needed.

17:28
So it's really interesting to hear that insight.

17:31
Yeah, I mean, I, I think it's true because I, I I feel pain strangely, I can't always pinpoint where the pain is, which again, I think is perhaps a neuro diverse thing.

17:43
Yeah, I think they what does how does he communicate this pain?

17:49
What does the healthcare staff do to support him, sort of communicate where the pain is or how bad it is or those sort of things are you wearing?

17:57
Well, he will talk about it.

17:59
He's he's very shy in that environment and he goes very introverted.

18:05
So the the consultant, you know, is, is just lovely.

18:09
I find her, you know, just joyful.

18:12
And she's got pink hair.

18:16
She's brilliant.

18:19
He, I know he likes her, but he doesn't engage with her.

18:25
Do you know what you mean?

18:26
He'll talk positively of her outside of the room, but he doesn't really engage.

18:30
He's very quiet in the appointments.

18:32
Yeah, he's not himself.

18:34
And actually even now with him feeling better and he's fun, you know, he's a fun kid.

18:39
He's really funny.

18:42
I was really excited.

18:43
It's this is a weird thing, isn't it?

18:45
I was really excited at the last appointment we had because he's he's, you know, he's doing so well.

18:49
He's and he's back at school full time.

18:51
He's seeing all his friends.

18:53
He's happy and and I was really looking forward to her seeing who he was.

18:59
Do you know what I mean?

19:00
Who I see And, and actually he was just like really quiet again.

19:04
And I was a bit like, I want to see, you know, what difference it's made and how happy you are.

19:10
But he's, he's just obviously he finds that environment very difficult.

19:13
Well, that really resonates me, Sally, that I think when your child when your child, because we've been accessing some health care for my daughter and when they don't see the person necessarily you see at home, it's really hard to kind of explain, isn't it this they can be so different in different settings, your children that and it's so, yeah, I certainly found it helpful when I'm like, yeah, this is this is who she is.

19:37
Do you know, like why I think you've been seeing this so long?

19:39
So yeah, that's that's great that your son felt more comfortable or was feeling better.

19:45
Do you know that last time I'm curious about with your son being 14, like how how have you navigated discussing his anxieties with the healthcare professionals kind of in front of him?

20:01
I feel like that's a tricky situation where you feel like you're almost could divulge too much or kind of cross the line or make him more embarrassed or more anxious.

20:11
Have have you navigated that one?

20:15
I do.

20:15
I don't know.

20:16
He doesn't seem he, he, he's, he doesn't seem particularly bothered.

20:22
I, I, I, I could say or I would say to him, is that OK?

20:25
You know, I mean, we have, we had these conversations.

20:27
Should I speak on your behalf?

20:29
Yes.

20:29
And, and, you know, if I say something you don't like, can you interrupt, you know, or if what I say isn't correct, we've got two more questions for you, if that's OK.

20:39
What advice or tips would you give to other parents or autistic children accessing health care?

20:45
I think don't hold many expectations and be patient.

20:52
I mean, in terms of what works best for your child, I guess that will be an individual thing.

20:57
So I mean, I think for my young, for my son, it, it's being prepared, it's knowing what's going to happen.

21:05
I don't think that's probably necessarily true for everybody.

21:08
Some people don't want to know, do they?

21:09
They'd just rather be sort of thrust in.

21:12
But it's so it's just, you know, asking your child and listening to them and, and, and just believing them.

21:21
I think that's probably, you know, really important to believe them because it's very easy to disbelieve a child when they're telling you something because of this whole, you know, get on with that, You know, come on, come on.

21:33
Only 5 minutes.

21:34
It'll be OK.

21:35
But that doesn't take into account what they're actually feeling really listening and validating their experience.

21:41
Yeah, You know, I'm still not.

21:46
I don't tend to be an expert at all.

21:48
It's, it's, it's, it's difficult, but I, I think those things and, and as you said, advocating, just advocate, don't, don't think, oh, I'm being, I'm, I'm being a nuisance.

22:01
That's always my default.

22:02
I want to, if you don't mind, just to extend that question a little bit, Sally, just to thinking about that's such great advice you've just given to for the other of our parent listeners out there today.

22:12
But I'm also curious about what are you doing to look after yourself?

22:16
So obviously listening to yourself, validating your own emotions.

22:20
That is huge.

22:21
But how do you soothe yourself?

22:24
How do you kind of get by each day when there's so much going on and you just need to do that little bit of self-care, I guess for wonder of a better expression.

22:38
I don't know.

22:38
I mean, I've, I've got dogs that helps me walking dogs.

22:44
I mean, yeah, I'm, I'm kind of because I'm at the stage where my kids are older and they're safe to be left.

22:48
So I do have certain more freedom perhaps than, you know, your other other listeners, being with friends, the support groups are incredible.

23:00
You know, I just think, and it's not only you seeking habits, you offering help.

23:05
I think that giving back is really valuable and, you know, perhaps some gratitude That just sounds so, but it, I, I just think it's amazing And I, I, I press it.

23:22
I like, I like, I just, I like being in the woods.

23:24
I like being in nature.

23:25
I can literally feel my dial going down when I take that time.

23:33
So I suppose things, things like that, but I don't know.

23:37
I'm great at it.

23:40
I think I'm, I'm getting better.

23:41
I've just actually, I started going to the cinema once a week with my brother.

23:46
So it's different things like that, you know, it's, it's quite cute.

23:51
And then it feels like for me it feels a bit naughty going to city.

23:56
He won't shift.

23:56
So he going to the cinema like we're going to more lunchtime.

24:00
It's like, it seems like really indulgent.

24:03
But actually part of my difficulty, I think with all of this has, has been the feeling of being trapped.

24:10
And, and I have felt very resentful at times that, you know, and breathing where I thought my life would be.

24:19
And, and actually, you know, we've kind of got to the stage before it all fell to pieces where we had a bit more freedom, life was a bit easier.

24:29
And then it all went wrong, you know, so we weren't able, you know, every, everybody was so unhappy and you know, they couldn't be left.

24:40
And I think, I think acknowledging, I mean, it's OK to acknowledge those things.

24:47
It's this is not an easy journey.

24:50
And just think, trying to be kind to yourself and actually not expect too much and just acknowledge that, that it is difficult.

24:59
And sometimes, sometimes you're going to get it completely wrong.

25:02
And sadly, it sounds like you're learning how to give yourself a bit more self-care and kind of connection with other people and find things that you find enjoying, which you need to do, Don't you, to balance out that massive drive that you have to kind of look after your children and protect them and keep them well and healthy.

25:16
It's it's to say it's hard.

25:18
It's hard to keep that balancing far about that time.

25:20
But there's little moments where you're walking in nature.

25:24
They're little things, aren't they?

25:25
But it sounds like they're really soothing for you.

25:28
Yeah.

25:29
And I think it's important that parents don't think, you know, that everybody they see isn't like, oh, you know, this is brilliant because it isn't.

25:35
It's really hard sometimes.

25:38
We're we're just so incredibly grateful, Sally, to sharing and being so open with us today.

25:44
We're absolutely inspired and bowled over by everything that you're going through and been through.

25:50
And yeah, we're so grateful.

25:53
We just wanted to end.

25:54
If it's OK, Sally, with a final question, which is about if you could have one wish for how hospitals or other medical settings could do things differently for autistic children, what would you wish?

26:07
Oh, gosh, I don't know.

26:16
I mean, I, I would say the, you know, I think I've got gold standard.

26:21
We've had gold standard care at the rheumatology department.

26:25
I really do, you know, everything they've done.

26:28
So what specific valley is it?

26:30
That's been helpful.

26:32
It's it, it, they flex everything, you know, they, they, they move things around.

26:41
They're patient, they're kind.

26:44
They they, they, they try to support him.

26:48
You know, rather than him fitting into the system, they're trying to make their system fit him.

26:58
So, you know, just that tiny thing.

27:00
We don't sit in the waiting room.

27:01
We sit outside in the cafe, really listening to its needs and personalising it.

27:07
Yeah.

27:07
And that, you know, that that just seems like nothing, doesn't it?

27:11
It's, it's not really any quieter.

27:12
I don't really understand what the feeling is for him, but that's clearly what he needs.

27:17
It means extra work for them because they have to walk out and find us.

27:20
But they do that with good grace and it never, you never feel like you were being a problem.

27:26
And I think that's the other thing because, you know, kids pick up on that.

27:31
If they're, if they feel like they're being difficult or awkward, you know, that's, that's very bad for them.

27:38
It's going to make that experience harder to access in the future.

27:43
So it's it's on that patient.

27:45
Yeah.

27:45
And it sounds like your son Will might feel more that they're wanting to help him.

27:49
They're wanting to support.

27:50
They're adapt, making adaptations that he feels.

27:55
Yes.

27:55
Yeah.

27:56
Feels like an individual and he feels hurt.

28:00
Amazing.

28:01
Sally, thank you very much for sharing your experiences and your journeys you've been on.

28:06
We're really kind of bonded up.

28:07
We're privileged to kind of hear them.

28:09
So thank you.

28:10
Absolutely.

28:11
Thank you.

28:11
One wishes.

28:13
Bye.