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

0:15
We're clinical psychologists specialising in child health care, 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
Hi, and welcome to episode 6 of Little Journey Spotlight Session.

1:00
Today we're going to be joined by the lovely Nicole Bateman who is a mum of two.

1:06
Nicole is an ex teacher and Co founder of the Super Sensory Squad which creatively uses a lovable squad of Penguins to educate children and families about the 8 sensory systems.

1:18
In our session today, Nicole shares with us how she's used her knowledge of the sensory systems to help regulate and support her children when they've been accessing healthcare settings.

1:29
We're really looking forward to sharing her experiences and insights with you.

1:33
So welcome, Nicole, thank you so much for joining us today.

1:37
Hi, Nicole.

1:38
It's great you're here today.

1:40
I wonder if you could start by just telling us a little bit about your family and about your children that you're here to talk to us today about.

1:48
Yeah, absolutely.

1:49
So I'm Nicole Gatman.

1:51
I'm a mum of two.

1:53
I was a teacher and now I run a company called the Super Sensory Squad.

1:59
I have two kids, one son who is 8, He's autistic and has epilepsy, having his first seizure four years ago.

2:08
And then my daughter, who is five, she is currently under investigation for epilepsy after having multiple seizures.

2:20
And obviously we would love to know a little bit more about your healthcare journeys both with your son and yours.

2:27
It sounds like though it's been difficult kind of navigating the healthcare system with both of them.

2:34
So should do you want to start with talking to us a little bit about what's been going on with your son?

2:39
Yeah, absolutely.

2:40
Yeah.

2:41
It's a lot of people probably listening will be have similar, similar stories potentially with accessing support and care for your children.

2:53
When my son was four, he had his first seizure in the bath, and that moment changed everything for us.

3:03
It totally turned our lives upside down.

3:07
That was the day that I became hyper vigilant.

3:10
I became more anxious, and it's impacted every element of our lives.

3:17
At that point, I didn't have a big understanding of seizures.

3:22
So I just thought that seizures were the typical shaking on the ground that you see maybe in the media.

3:31
But something that I've learned that I love to share with others is that actually there's 40 different types of seizures.

3:36
So for my son, he has focal epilepsy of the temporal lobe and his seizures do not present as convulsions shaking.

3:46
So therefore it's for me, you know, that's something that I, I love to share with others so that we can be aware of the different types of seizures.

3:56
Also his trigger then, and something that's continued is actually the bath, which again, you think flashing lights, you know, that's what we're told often flashing lights.

4:06
But actually only 3% of seizures are triggered by flashing lights in those who have epilepsy.

4:12
So it's a very low percentage and triggers for my son, you know, our bath, anxiety, excitement, heat and so the summer is really tricky sometimes and things like that.

4:25
So an illness as well for him straight away.

4:30
At that point we got taken to hospital.

4:34
Often when you have one seizure, you then don't get any further investigation after that.

4:40
So they wait till your second seizure.

4:43
So that time between the 1st and 2nd seizure can be really nerve wracking because you know they've had a seizure.

4:48
You don't know why they don't give further tests unless there's repeated or extended over 5 minutes because that then can cause, you know, brain, brain damage and and status epilepticus.

5:04
So we were sent home with a little leaflet about seizures and I became a hawk.

5:11
I was watching his every move and it's that waiting and that watching that I'm sure many people have gone through.

5:18
Two weeks later he had two seizures in quite quick succession.

5:23
So we were back in hospital and that's when they started to investigate.

5:28
That's when he had a 30 minute EEG with the wires on his head and then an MRI as well.

5:37
He did super well.

5:38
He was 4 at that point.

5:41
So well, what was good is that in the MRI machines in the hospital we were in, they had a screen that you can put a film on, which was so helpful.

5:52
I know that not all of the different MRI, even in the same hospital, not all of the Mris have a screen, but fortunately for us there was 1.

6:00
So he could focus on that without having to go under general and a set it or to be able to go in the MRI.

6:07
So that was really, really positive.

6:10
We then he then had a 48 hour EEG and that in itself with wires on your head for that long, with the glue that takes ages to get out and a little backpack filled with, you know, with wires and different things like that.

6:26
So he coped really well with that.

6:29
We called them his superhero wires and he, yeah, he was a superhero.

6:35
Sleeping was tricky with a backpack on your back but he managed them amazingly well to be honest.

6:45
And then you know he got the diagnosis and unfortunately for us he has drug resistant epilepsy.

6:52
We were told recently because we've tried about 5 different drugs and combination of drugs to try and control his seizures.

7:00
So for us, we are for him, he's part of the 30% of people with epilepsy that don't get seizure control with medication.

7:09
So it's an ongoing thing.

7:11
We often go to visit hospital.

7:13
We have a lot of ongoing appointments, check insurance.

7:18
He also got diagnosed with with yeah, he's also autistic and he got his autism diagnosis last June after a number of different waiting times and things like that or that which comes with it a lot of different sensory issues.

7:34
So hospitals, you know, they're, they're full, they're full of light, They're full of smells.

7:41
They're full of, you know, with the EEG especially, you know, that's very, very tactile.

7:46
So, so yeah, it's been, it's been a very up and down journey.

7:52
Lots of emotions, especially when my daughter also started having seizures as well.

7:58
We knew what was to come, but it's still not something that we wanted for her.

8:06
Yeah, it sounds like an incredibly hard and stressful journey that you've been on with both of your children.

8:14
I'm just curious to know how he's coped with the epilepsy diagnosis and the autism diagnosis.

8:20
How is he hoped and managed with that?

8:23
So from a young, because from a young age, you know, because he was four, he he's very used to having seizures, if that makes sense.

8:32
He now knows, which is amazing.

8:34
He's, he has auras beforehand, so he's now able to say I feel funny or, or afterwards, you know, he, he has focal impaired awareness where he doesn't have any idea of what's going on at the time, but he also has focal awareness seizures.

8:52
So in those ones he's aware and that's when he can say I feel funny and that's the language for us to be like, OK, he's, he's going to have a seizure.

9:01
So he, it's very much part of his life.

9:06
He now is quite used to hospitals, especially one that we've been in for the for the whole time.

9:14
So going to hospital for him now four years on is not such a a big thing because he recognises everything and he is used to it.

9:26
He we used a great book from the abilities in me foundation that was talking about epilepsy.

9:34
So that was before obviously now on an app.

9:36
I'm like this is this will be great to see, you know, with the little journey, but we used a book straight away.

9:42
We then from a young age told our daughter she was only 1 1/2 at the time, but again showing those pictures of a boy having an EG in cartoon form.

9:54
So she also that did help her knowing that her her brother had gone through an EEG because she'd seen the wires on his head, that she'd seen his superhero wires.

10:06
So when she went, even though she had some issues with it, she knew my brother had this, she'd seen it in the book, she'd seen it physically on him.

10:16
So that was helping her to prepare as well.

10:20
So he, yeah, he with his epilepsy diagnosis, he knows, he knows he has to have meds to help him.

10:28
And, you know, apart from when he's I'll, he takes his meds very well.

10:33
So that's really good with autism diagnosis.

10:37
We haven't, we haven't actually told him yet.

10:39
He's autistic.

10:42
We break down things like he knows that he different sensory issues that he has because we break them down.

10:49
And he knows that some things help him regulate, some don't help him regulate.

10:54
What can help him.

10:56
We've we've yeah.

10:59
So therefore we will, when it's the appropriate time for him, we talk about how his, his brain is different.

11:08
And so all of that language we're building up to when we think it will be useful to him to know the word autistic.

11:16
But he knows that his brain is different and that he processes things in different ways.

11:21
So that at the moment is how he processes it.

11:24
We also talk to our daughter about the fact that 'cause she, you know, she cares for him a lot.

11:29
She is, you know, she is classed as a young carer and she has to do things that are not like a 5 year old who doesn't have a brother who is autistic would have to do like helping him with dress, getting dressed, although we obviously do that.

11:47
But she chivvies him along and she she does those extra things.

11:51
So it's more about also trying to explain to her that his brain is different and he will process things in different ways.

12:01
And that's OK because we all have different brains and that we all have different strengths and, and things like that.

12:08
So, and we're at that stage at the moment trying to explain.

12:12
And at the moment we use a lot of the sensory things because of the the Penguins, the Super sensory squad to try and explain those, some of those differences to try and help my daughter understand why it's why it is fair that we sometimes treat him slightly differently to her.

12:34
Yeah, it sounds like you're on a journey with him and and paving it in such a lovely way where you're giving a language that you can use as a family with the help of the Super sensory squad, which is 8 Penguins all based on different the different sensory systems.

12:50
I would love for you to tell us a little bit more about the Super Sensory squad, if you don't mind.

12:55
Yeah, yeah, absolutely.

12:57
So, yeah, the Super Century squad is just helping kids understand themselves and their body a bit, a bit better because we all will seek certain things or avoid certain things.

13:10
So trying to equip kids with skills of understanding.

13:14
Actually, I might be avoiding that touch and maybe I'm quite sensitive to touch.

13:20
Well, what does that mean?

13:22
You know, how can I say Buzz, our Penguin who links with the tactile system can ask what can you touch?

13:28
So it's helping introduce two children at a young age using fun characters that we all have different sensory needs and we all seek certain things and we all avoid certain things.

13:42
And that might be different to our brother or sister, that might be different to our parents, and that's OK.

13:47
And then also equipping them with strategies to regulate.

13:52
So my daughter is like, I like touching fluffy things like buzz, and that's what helps her feel calm.

13:58
And my son, he's like, I like spinning like Rollie, who's our vestibular Penguin, which links to the movement sense in our, in our inner ear.

14:08
So it's trying to give them that basic shared language to help them understand their bodies, what they're wanting to help them regulate and feel calm and what they, what triggers them as well.

14:21
That and then also the third step.

14:23
So it's understanding the sensory processing and sensory needs, regulating, having strategies to help them regulate, but then giving them the skills to advocate for their sensory preferences and also for their families to advocate because it's so important that everyone understands the different needs and what helps regulate them.

14:41
And if we equip them when we're when we're young, when they're young, sorry, then they're set for life, aren't they, with skills.

14:48
So, yeah, that's been super helpful in explaining some of the differences between the siblings as well.

14:58
I think it, it's absolutely fantastic idea.

15:01
And I absolutely love all your, all the Penguins and the, the aim that you've got with regards to equipping not only the children, but parents with a language that they can use to describe the difficulties that they're going through and, and what their preferences are.

15:18
I'm currently doing one of your courses and it is fantastic and I'm learning so much and yeah, I, I, I just love what you're doing.

15:27
I'm really curious, Nicole, about how with all this, the sensory kind of systems in mind, how you kind of applied that thinking to your hospital visits with your children.

15:40
Obviously, we all, as you've touched on earlier, hospitals can be totally sensory overwhelm and especially for neurodivergent kids, it can pose a massive challenge.

15:51
So how have you kind of handled that or broached that with your children?

15:56
So we, we've made, yeah, social stories with the Penguins recently, you know, over the last year to be like, actually, what can you, you know, when you go in here with pictures as well.

16:07
So to be like, this is what it looks like when you go in, your body may be feeling like this.

16:15
So therefore do this using, talking about interception, not, not using that word with kids, but you know, just like for the young ones.

16:24
But thinking about actually my, my stomach is feeling funny or whatever they say, like butterflies, some might say, or fuzzy.

16:33
What does that mean?

16:34
That means I'm feeling a bit, I'm worried.

16:37
So therefore, what do I need to do?

16:38
What helps me regulate and just mapping out.

16:42
This is why I love, you know, what little journey you're doing because I've basically done it in, you know, just just using the old school paper and printing off things and things like that to, to help them understand the lights might be bright or you might smell food or you might smell cleaning things and all of these things like aromas.

17:02
So using that to help them prepare, which is why with what you're doing with the app so useful because I've basically just done that in the old school format and then you're doing it in the technology way forward format with your app.

17:20
So I wonder if you could tell me any examples that you have of adjustments that have been made in the hospital settings for your son or daughter to to cater either for their sensory needs or or other needs besides to help them get through procedures.

17:37
Yes, absolutely.

17:38
With blood tests, we you get the numbing cream and often you then have to wait in the hospital for an hour or something like that for to make it to work.

17:51
But we, I rang up the hospital, I was like, can we come and pick up the numbing cream so we can then do it at home so that then there's less time in the hospital environment.

18:01
And they agreed to that, which was great.

18:03
So my husband went to pick it up the night before we could put it on at home.

18:09
We had that calm routine at home.

18:11
It stops us being in the busy environment for too long.

18:15
Then we literally walk into the, the blood test room so we don't have to sit in the waiting room.

18:22
And yeah, the, the nurses there that did the blood test were so good.

18:27
They said hug mummy.

18:30
We hugged and they, they took the blood.

18:32
So it was very low demand, low threat.

18:37
They then gave the lovely certificate and sticker, which my son loves.

18:42
So it was, it was really helpful for them to be able to say actually you can do this at home.

18:47
The texture of the cream is not great.

18:49
So obviously we but it's better to be done at home rather than the hospital because he's less heightened.

18:55
So that was a great reasonable adjustment that they made there for the blood tests.

18:59
It sounds like that you had to prep the hospital to do that.

19:03
So you have that actually this hospital setting would be overwhelming and it'd be better to kind of regulate him at home with the cream.

19:09
So you had to do that initial understanding and preparation and then the hospital were great that they kind of like, yeah, that's a great idea.

19:15
And yeah, that made that adjustment.

19:18
I think.

19:19
I think, and that's a key point, I think because if you're a parent who is proactive and has that understanding and, or has that capacity in your head to be able to understand it, then you can advocate in that way.

19:33
But actually never, that's quite a strong word.

19:37
But never have the hospital or GP or anyone suggested any reasonable adjustments.

19:45
It's always has to come from me and say that's, I think it's a really important point because if you're not proactive and you don't chase or you don't ring, then you don't get it.

19:58
And that's so hard for a lot of parents and carers who are kind of potentially exhausted from their child with magical needs, additional needs, you know, with additional whatever's going on for them, it's really hard to have brain space and capacity to do that.

20:13
Definitely, definitely.

20:14
But that's in the last four years.

20:17
That's why you are often in fight mode, because you have to advocate, because if you don't.

20:24
We probably wouldn't have had the HCP by now.

20:26
We wouldn't have.

20:27
He may have been.

20:28
I had to advocate to get him off a certain drug that he had because it changed him.

20:35
It changed his personality.

20:37
I ended up with a bleeding lip.

20:39
He was very, very aggressive.

20:41
It's a well known drug for epilepsy that does 'cause this.

20:45
But I still had to put my foot down to say, no, we need to because sometimes the doctor's like, oh, we'll see how it goes that I'm so pleased that I did that.

20:57
But if I didn't, then my son, especially when they're children, they could say, oh, maybe they're just going through changes in their brain anyway or things like that.

21:08
If I didn't put my foot down, my son could be a very different person right now because of the side effects of these really strong drugs.

21:18
We've done so well to advocate for him, but also recognise the need to look after your own well-being in order for you to have the strength to do that.

21:26
Yeah.

21:27
And I was wondering, Nicole, if you could, if you have any top tips for our parent listeners out there with regards to specifically advocating for your children in hospital or medical settings.

21:39
Because we, as we've acknowledged, it is hard.

21:42
Sometimes it is.

21:43
It is hard.

21:44
So yeah, definitely first of all, gathering any documentation that you have, putting it all in a either e-mail folder or physical folder.

21:55
I have a Excel spreadsheet that I've set up where I can say who it is that I've contacted because there is so many different professionals involved with my son.

22:06
Who it is, did I e-mail or did iPhone some notes so I can write it down and track it and then follow up one and two because I mean, sometimes it's you have to follow up about 6 times, but you know whether you've followed up so you can just track it yourself and you can think, OK, well in this appointment they said this or in this phone call they said this because it's so easy to lose track of what's been says what you know what, what different letters say.

22:38
So I think gathering and collecting that information is first rule key, then understanding your child's specific needs, because often they're more complex than just one thing with, you know, with my son, with the epilepsy, the cognition, the memory, the executive functioning, you know, he's autistic as well.

22:57
And that that's where the sensory processing, different things come in play as well as sequencing.

23:04
So there's there's a number of different things.

23:06
They're both medical and educational and so understanding those specific needs and writing them down and thinking about even observing your child in a general day, thinking what are the extra things that I need to put in place that maybe in the medical setting they need to put in place as well.

23:24
And then using understanding some of your rights as well, I think is important because sometimes I have had to use and quote send law and the equalities Act to, to be able to be like actually making reasonable adjustments is something that you should do.

23:42
You shouldn't, it shouldn't be something that I have to fight for.

23:44
It should be done.

23:46
So understanding some of your rights is important because sometimes you have to use the language that they might use to be able to counter it.

23:57
And sometimes us as parents, many times I've been made to feel stupid.

24:03
I've been made to feel like people don't believe me.

24:07
And you sometimes question yourself because you're like, well, a doctor's telling me that.

24:13
A doctor's saying that maybe there isn't anything.

24:15
Maybe I'm making a big deal of this.

24:17
This is many of us feel like that and often our, you know, people put it on our parenting styles or things like that, especially, you know, with with autistic, you know, having an autistic child very much and more so than the epilepsy, but that's, you know, is is oh, you're parenting in this way.

24:34
So that's why this person does this and I that's wrong.

24:38
So it's understanding that, no, you know your child best trying to then use some of the phrases that they might use in their communication back at them because you then to show that you know what you're talking about and that you cannot be pushed aside.

24:57
Because unfortunately, we never want to be that parent.

25:01
I don't want to be that parent.

25:03
That's seen as a hassle.

25:05
But actually, if a medical professional, education professional, anyone is not actually catering for my child's needs and not making sure that he is safe and secure in that environment, then I will be that parent.

25:18
And you need to be that parent too.

25:20
Yeah, You know, so organisation, understanding, gathering all that evidence, tracking it down has been useful.

25:27
And then using that language back at them so that they then know that you know what you're talking about.

25:34
Yeah, Yeah, that is so helpful, Nicole.

25:36
And it's, it's making me kind of think as well about holding on to the confidence that you, you might not have all the medical degrees and the medical knowledge, but you do know your child best.

25:47
And you probably do know more about autism or neurodivergence and especially sensory needs, things like that.

25:57
Then a lot of the medical teams will, will know about.

26:01
And so it is about flying, flying that flag and, and, and sharing that knowledge and be, and holding strong on the importance of that as well.

26:13
Because I, I think it can sound like, oh, the little adjustments that they might not appreciate would make such a big difference.

26:19
Things like how they speak to the, your child or how, how they touch them or don't touch them or the, you know, the lighting and things like that, that they might feel like you're being a little bit OTT as a, as a parent.

26:34
But actually, it can make the difference between them being regulated or not and being able to go through with that procedure or not.

26:41
Yeah, yeah, absolutely.

26:42
Because if they're not safe, they're not going to get on that MRI bed.

26:45
They're not going to let you touch their head if they do not feel safe to then put those wires on the head.

26:52
I just wondered, like, what you do to support your own emotional well-being given the challenges you've experienced as a parent?

27:00
Yeah, I could be better at this.

27:06
Try and get the support that our children need, whether that's in the medical setting, whether that's in the local authority or education or all of them to try and try and workout what's best for our child.

27:20
So we, I am definitely, my nervous system needs work.

27:23
I know that, I'm aware of that and I'm very self aware.

27:26
But it's finding the strategies and the time to be able to do that because you're spending hours chasing emails, phoning, doing all those while looking after your children and all of those things and trying to run a business.

27:40
So I, I love going to the beach.

27:44
I fortunately am quite close to a beach.

27:47
So that watching the waves, having the wind in my face, I love those sensory elements there of the beach that I find regulating.

27:56
But it's something that I can't do every day because it's not practical.

28:00
But it's, it's about thinking about those little things that we can do as parent carers in our day, putting them into practise.

28:10
I've started, you know, with my morning routine of making sure that I start the day.

28:15
Well, I've been trying to do that.

28:18
And I think, I think it's hard, but it's so important because if we're more regulated and our kids are more regulated and we've just been chatting about even this morning Co regulation is so important.

28:32
So I think it's, it's important to remind ourselves that we need to help ourselves get out of this fight flight freeze response.

28:41
We need to activate some regulation strategies and we need to make sure that we are regulated so we can be the best that we can look after our kids.

28:50
Absolutely.

28:50
But I'm, I'm a work in progress.

28:52
So I'm really curious.

28:53
Can you give us a little insight into what your morning routine is then to help prepare for the day and soothe yourself in some way to regulate your nervous system?

29:01
So for me, I'm a Christian.

29:04
So I read, read the Bible study, and then I listen to some tunes, worship tunes and musical big things like Wicked, Define Gravity.

29:15
No one's ever going to bring me down to shout that, you know, sing that out.

29:20
So yeah, then, then I will, yeah.

29:23
Then I'll be able to come down to then have breakfast because fortunately my husband takes him down first.

29:28
So I can just have this like 5-10 minutes to do those things to then help.

29:33
Oh, I love hearing that.

29:35
Sounds like, yeah, there's the faith aspect that having that moment of calm isn't there?

29:39
And then there's kind of listening to this music that auditory, like singing out together.

29:44
That's great.

29:44
Thank you for sharing that.

29:47
Nicole, we've got one last question for you, if you had one.

29:51
Wish for how healthcare settings could do things differently, better for children to support them.

29:56
What would it be 1 wish?

30:00
I think that it would be to listen to listen to the parent, not dismiss the parent and make those adaptations so that the child feels safe and secure in the environment.

30:21
Because if they're a child with a long term health condition, they're going to have to go into hospital many times in their life.

30:30
So starting well, having that preparation again links to a little journey app having that.

30:38
I wish that I would have that when I first went into hospital because I was trying to recreate something the best that I could.

30:47
That visually seeing that and having the child to go through and see the environments, it just helps very much them feel prepared.

30:58
So there we go.

30:59
That's my wish that people had this, people had this insight into hospitals to help prepare the children.

31:08
That's lovely.

31:08
Thank you so much, Paul, and thank you so much for joining us today.

31:11
I'm really quite bowled over by how much you've been through with your kids and how far you've come with regards to your knowledge and also being amazing advocate for your kids, but also sharing such wonderful wealth of knowledge with other people and sharing that language around senses which can make such a huge difference.

31:31
I think we're just at the start of this journey of society knowing more about themselves, understanding the importance, importance of them and the children, but for adults as well, and how we can use that knowledge to understand ourselves better and regulate ourselves better.

31:47
So I just, I'm so impressed with all the work you're doing and I'm so grateful for you to come and share some of your insights today.

31:54
Thank you so much.

31:56
Thank you so much, Nicole.

31:57
All the best.

31:58
Thank you.

32:00
We've really enjoyed speaking with Nicole today.

32:03
For more information about the Super Sensory Squad, please follow the link below.

32:08
And we also want to thank you, our listeners for joining us today and to our fabulous team, a Little Journey for making this episode possible.

32:16
If you'd like to be notified about new Spotlight sessions, please click subscribe on the Little Journey YouTube channel.

32:22
Thanks.

32:22
Bye bye.