All Things Autism – My Liferaft, Nicola Murgatroyd.mp3
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Speaker 3
00:00 – 00:08
Hello, everyone. This is Anna Kennedy and we’re talking all things autism. We’re live and we’re in Covent Garden and it’s 2020. Oh, my word.

Speaker 3
00:08 – 00:19
We’re the start of a new decade and one of my first shows of the decade. So this is great stuff. I just can’t believe it. We’ve had Christmas and it’s a bit stressful for me.

Speaker 3
00:19 – 00:41
My youngest son, Angelo, wasn’t very well at all. There’s nasty bugs that are going around at the moment. So, yeah, we were just trying to keep him as happy as possible, even though He was just feeling unwell, went to see a couple of pantomimes, which I absolutely love. And one of my friends was Sleeping Beauty and she did a fantastic job and she has such a lovely voice.

Speaker 3
00:41 – 00:56
So a big shout out to Ionica. You did fantastic and you should be proud of yourself. My guest today is Nicola Murgatroyd and she was inspired by her daughter with multiple and complex needs. And she’s the founder of My Life Raft.

Speaker 3
00:56 – 01:07
and it’s recognising the needs to have a system that could contain all the information in one central place when caring for a child or a loved one. Welcome Nicola.

Speaker 10
01:07 – 01:10
Thank you, Anna, and thank you very much for inviting me today.

Speaker 3
01:10 – 01:18
Thank you. So before we go into your story, as in the story about Life Raft and about your daughter, tell me a little bit about who is Nicola? Where are you from?

Speaker 10
01:20 – 01:29
Well, I grew up in South Buckinghamshire. OK. I now live on the Isle of Wight. I How would I describe myself maybe?

Speaker 10
01:29 – 01:42
I am a devoted granny to my four gorgeous grandchildren. Four grandchildren? Four grandchildren, yeah. Phoebe, Sophie, William and James.

Speaker 10
01:42 – 01:51
I’m a bit of a serial entrepreneur as well. I do like to keep busy, as you do, Anna, from what I understand. Yeah, I think you should keep busy.

Speaker 3
01:51 – 01:56
And I’m just thinking when I retire, I’ll probably still be working till I’m about 88 or 90 or whatever.

Speaker 10
01:56 – 02:16
Yeah, well, that’s pretty much what I’ve done, actually. And yes, I tend to thrive on being busy, and I think that’s… just part of being me. I’ve got, I live on the Isle of Wight now, I was meant to go there and retire but I felt I couldn’t which is what we’ll talk about a bit more with my life raft.

Speaker 10
02:18 – 02:25
But I have got 11 miniature Shetland ponies and a 12-2 carriage driving pony who does a lot of riding for the disabled work.

Speaker 3
02:26 – 02:28
Oh that’s lovely, is that equine therapy as well?

Speaker 10
02:28 – 03:03
Yeah, the ponies all do pony therapy, and they’re known locally on the island as the happy ponies. And we have therapy days where we get children, a lot of homeschool children come actually, and children who can’t be at school for one reason or the other, and also people from the homes for the elderly. where they sit around in the yard and we let the ponies roam free and the communication between the ponies and the people and particularly the children with autism actually is really good.

Speaker 3
03:03 – 03:17
So where did you get the ponies from? Because I’m a patron to Kilmarnock Horse Rescue and there’s a lady called Carol who basically rescues horses, donkeys, ponies, you name it, she rescues them. She’s an amazing woman. So is that something where your ponies came from, where they’re rescued?

Speaker 10
03:18 – 03:29
A couple of them are, but a couple of them I bought from an auction. And they had to, I only wanted to go and buy two, but I actually ended up with five.

Speaker 9
03:31 – 03:31
Why not?

Speaker 10
03:32 – 03:39
They’re irresistibly cute. Yeah, I ended up with five and then I’ve kind of added to that over the years now.

Speaker 3
03:39 – 03:43
That must take a lot of time, looking after all those ponies as well as everything else that you do.

Speaker 10
03:43 – 03:54
I have to say that I do have help. I have a wonderful person called Kirstie who looks after their welfare etc and they really are the happy ponies. They’re a fantastic little group of ponies.

Speaker 3
03:54 – 04:09
We were chatting that I’d been to the Isle of Wight about three, four years ago with my sons. And I went to a it’s like a holiday place where it was set up by a mum and dad who have a son on the spectrum. And it’s called Heartlands. It’s an amazing place.

Speaker 3
04:09 – 04:18
So if you want to check it out, it’s specifically set up for people on the spectrum. It has a sensory room. It has a swimming pool. They’ve got lots of equipment there.

Speaker 3
04:18 – 04:26
There’s trampolines outside. And it’s so lovely. And it’s in such a nice area as well. If you want to check it out, it’s called The Heartlands at the Isle of Wight.

Speaker 3
04:26 – 04:37
If you’re looking for somewhere to go on holiday with your son or your daughter, it’s a fantastic place to go. So tell me a little bit about Faith and your journey, if you don’t mind.

Speaker 10
04:38 – 04:57
No, not at all. Faith was born in 1981. It was just before they brought in scans. So a month before she was born, as far as we knew, as young parents, we were 25, 26 years old, we were expecting a perfectly healthy baby.

Speaker 10
04:58 – 05:36
And when she was born, it was very apparent that she had a very large spina bifida. And that involves all the nerves in the spine and the spine not forming correctly. It was immediately obvious to the team who delivered her that something wasn’t right. And so we had some very big decisions to make at that time because her spina bifida was so severe that the pediatrician who was there at the time said that surgery might not be the best option and that loving her and nursing her might be the best option.

Speaker 10
05:36 – 06:03
So we were faced with a bit of a life and death decision all of a sudden. We did decide to go for nursing care. only with her on the doctor’s advice but Faith was a real fighter and they told us that we would probably expect to have her for about a month but one month turned into two, then three, then four, then five, then six and so on. Who definitely was a fighter then.

Speaker 10
06:03 – 06:25
She was, yeah. She then developed hydrocephalus and then we went to the John Radcliffe in Oxford and embarked on a series of operations. And then we ended up here in London, actually, at the Chelsea in Westminster. I have to say, at that time, all the medical staff, doctors, nurses who looked after us were absolutely fantastic.

Speaker 10
06:25 – 06:45
We got the best treatment ever. And anyway, Faith fought on. As she grew, she developed epilepsy in her teenage years, and she was also on the autistic spectrum. So we had a lot of issues with Communication and OCD.

Speaker 10
06:46 – 07:08
So a lot of that inspired me to build my life raft because I was the holder of so much of the information about her. And it used to worry me that if anything happened to me, as I was a faith advocate, who, you know, how could that information be captured and passed on to others?

Speaker 3
07:08 – 07:39
I’ve spoken to so many mums who are worrying about, you know, when they get older and, you know, who’s going to look after their son or their daughter and obviously because of the system, the way it is at the moment and all the cuts that are going on around, it’s just that it’s very, very stressful because you do worry about who’s going to look after your son or your daughter when you’re gone and I totally get what, I just think what you’ve created here, the LifeCraft, sorry, the LifeRaft is, sounds fantastic. So can you tell me a little bit more about it? People are listening in and where could they find the information?

Speaker 10
07:39 – 08:14
Yeah, absolutely. A little bit more about it. Sadly, Faith died in 2010 and I had another business I sold and was going to take early retirement, but I had a bit of a a burning passion, I think, to develop a product that would help in the situations we’ve just been talking about. So I got together with a team, but was conscious of the fact that we needed to incorporate other people’s ideas and thoughts in it.

Speaker 10
08:14 – 08:31
So we did a lot of surveys, and we asked a lot of other parents and a lot of medical professionals, et cetera, before we embarked on building the MyLifeRaft tool. It’s a digital care support tool. What does that mean? It means it’s online basically.

Speaker 10
08:33 – 09:00
If people have got any questions they can go to the website which is www.myliferaft.com and there’s a questions and answers section on there and they can sign up. There’s a free version, the standard version is absolutely free, which is a very useful tool and it is one place where you can put everything. So you can keep building on it all the time? You can keep building on it.

Speaker 10
09:00 – 09:26
One of its great strengths is the continuity of information. So for any child who’s going through transitional phases or a child going into adult services etc, If you use the MyLifeRaft platform, you’ve got everything there. So there’s continuity of information. You can share information, but you set up your child as a managed user, and then you can share information with who you want to.

Speaker 10
09:27 – 09:32
So you are in absolute control, or the person who is using the platform is in absolute control of that information.

Speaker 3
09:32 – 09:53
So what sort of information can you put on there? And can I just ask, when you have put the information on there, and you do give it to a professional, do you think that they understand and can navigate? Because obviously our children and our adults have so many different appointments that they’ve got to go to and they get so many different reports. Is it easy to navigate and is it easily accessible?

Speaker 3
09:53 – 09:55
Is it easy to read, if you know what I mean?

Speaker 10
09:55 – 10:19
Yes, it is. It’s a young product and it’s continuing to develop and grow all the time, but it is easy to navigate, it’s easy to use. For the reports section, what you would do is to create an all about me sheet, for example, and then you can either print that off, you can laminate it, you can share it online with somebody.

Speaker 3
10:19 – 10:21
So you can put your photograph on of the person?

Speaker 10
10:21 – 10:23
You can put your photograph on, yeah. And you can keep building on it?

Speaker 3
10:23 – 10:39
Yes. So that’s useful. So you could give it to your GP if you wanted to, and then any appointments that you go to, you can just keep handing it out as in an updated version as you’re going along. So hopefully everyone is updated with the current status of your son or your daughter, hopefully.

Speaker 10
10:39 – 10:50
Yeah, yes, that’s exactly it, Anna. And part of the… the reason for voting it was to try and take out some of the repetition.

Speaker 3
10:50 – 11:08
OK, I know that’s the thing that I speak to a lot of parents that go to social services that they keep meeting different people and then they have to keep repeating themselves and it’s so frustrating. So I totally get that. So if people want to follow my life raft, you can actually look on Twitter. So it’s at my life raft.

Speaker 3
11:08 – 11:26
On Facebook, it’s at My Life Raft, and I’ll just repeat the website, which is www.myliferaft.com. So if people would like to ask questions about the process, and any questions or anything that they might be listening to, could they contact you? Is that okay, Nicola? Of course they can, Annie, yes.

Speaker 3
11:26 – 11:59
Okay, and again, if you’ve missed that, you can contact us via the charity website, Anna Kennedy Online, and we can pass messages on. Just to remind you, it’s www.annakennedyonline.com if you want to follow me on social media, it’s at Anna Kennedy One on Twitter, Anna Kennedy Online on Facebook, and at Anna Kennedy OBE on Instagram, and we’re always updating information on the charity website, whether it’s events, whether it’s news, or if you just want to ask a question, or you’re looking for some advice, please contact the charity website.

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12:01 – 12:03
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12:03 – 12:07
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12:07 – 12:12
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Speaker 3
12:12 – 12:22
Hello and welcome to Judy May Is Listening. Hi, this is Anna Kennedy and we’re at Women’s Radio Station supporting women’s well-being and we’re talking all things autism.

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12:23 – 12:27
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12:30 – 12:56
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12:56 – 13:00
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13:24 – 13:29
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Speaker 11
13:51 – 14:01
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Speaker 9
14:01 – 14:23
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14:32 – 14:55
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Speaker 3
15:00 – 15:06
Hello, this is Anna Kennedy. We’re talking all things autism. We’re live. We’re in Covent Garden and we’re supporting women’s well-being.

Speaker 3
15:07 – 15:24
Just to remind you that the Autism Heroes Awards are here again. So 2020, we’re in our fifth year. So if you would like to nominate someone that goes the extra mile, it could be a mum, it could be a carer, it could be a business. it could be a teacher that goes the extra mile.

Speaker 3
15:24 – 15:58
Please send us in your nominations. We had our amazing award ceremony at the Chelsea Harbour Hotel last year in November and again it will be in November on the 21st. The closing date to send in your nominations is September the 1st and we’ve had so many in already, I can’t believe it, like a couple of days after We had the awards, the entries started coming in. So please, please send in your entries where you feel that somebody goes the extra mile should be acknowledged and have a check out on the Autism Hero Awards on Anna Kennedy online.

Speaker 3
15:58 – 16:24
My guest today is Nicola Murgatroyd, who’s leading the way in integrated health care and well-being online. My Life Raft supports the growing need for individuals and their carers to take more ownership of their care. So Nicola. Can you say to me that, looking back now, would you have done anything differently, as in with maybe your daughter or with setting up My Life Raft?

Speaker 3
16:25 – 16:29
Is there anything that you might be thinking, I wish I’d have done that a little bit different?

Speaker 10
16:29 – 16:42
There is something that does stand out, actually, which is, when Faith was young, I had two other children as well. I had a son and a daughter. Okay, was she the oldest? She was the oldest, yeah.

Speaker 10
16:42 – 17:07
And looking back on that, I think one of the things that we missed out on. And I say we, I think we as a family missed out on, but the younger siblings, particularly Faith’s younger siblings, was some care and some counselling for their mental health. And for Faith herself, actually. I mean, Faith was a paraplegic.

Speaker 10
17:07 – 17:42
She was totally wheelchair bound. She had a huge number of challenges to navigate through. And we did the best possible that we could. Now looking back on it, I can see that the effect of it on the family, the effect of it on my first marriage didn’t survive, the effect on Faith’s siblings, I think some sort of counselling, some sort of help for us as a family to look after our

Speaker 10
17:42 – 18:04
mental health. would have gone a long way actually and I think it should be offered, not everybody would want to take it up of course, but it should be offered. It should be there if you want it. It should be there and it should be offered for any family who has a child with a disability in their midst.

Speaker 10
18:04 – 18:17
It’s help, not just, you know, there is a lot of help out there. It’s all fragmented and it’s all a challenge. It’s not all joined up together. It’s not joined up and there’s constant battles that you and I could talk about, I think, ad infinitum.

Speaker 10
18:17 – 18:30
And, you know, there still are all these battles and they’re time consuming. They drain your energy. And, you know, there’s little time left, I think, just to say, are you all right?

Speaker 3
18:30 – 18:37
Is everything all right? And the systems in place are quite complicated and, you know, you have to learn a different language almost when you’ve got a son or a daughter with special needs, don’t you?

Speaker 10
18:38 – 18:39
Oh, definitely.

Speaker 3
18:39 – 18:46
Definitely, yes. So did you get any support with your daughter? Did you get any sort of respite?

Speaker 10
18:46 – 19:00
No, very little respite. Very little respite at that time, and I’m not so sure that it’s improved very much since. I think a lot of the challenges are still there. There’s a lot of resources.

Speaker 10
19:00 – 19:11
There is a lot of help, but it’s quite difficult to access it. It’s quite difficult to find it. You have to fight for everything, don’t you? You have to fight for the budgets.

Speaker 10
19:11 – 19:27
You have to fight for the money to support the education. the care or whatever, it’s a constant fight and battle and that wears you down over a long period of time. And I’ve seen that happen to so many parents. Yeah, burnout.

Speaker 10
19:27 – 19:47
They just burn out. Parents get worn down and burn out. What’s so sad, Anna, is I see then you younger parents coming in all full of enthusiasm, etc. But we need some fundamental changes, I think. Again, my life raft, it puts the person at the center and it puts the person in control.

Speaker 10
19:47 – 20:13
So what I am hoping is that through tools like this that we can then start to help to streamline the system and bring appropriate resources directly to the person and streamline some of the form-filling and the battles that we’ve all been through for the different budgets. Those personal, independent forms that it forms.

Speaker 13
20:13 – 20:18
It’s just that you look at them and you think, oh, it just gives you a nosebleed thinking about it. Absolutely.

Speaker 3
20:18 – 20:30
What’s the services like in the Isle of Wight? I don’t really speak to that many people from the Isle of Wight so I was just wondering what are the services like as in autism diagnosis or education, what is it like in that area?

Speaker 10
20:30 – 20:54
I’m not very close to that there now because as I say Faith died in 2010 and we were still living in South Buckinghamshire. Right. But I do know that at one time people used to move to the island because the services were very good or better than in other parts. It is a lovely place to live, the Isle of Wight, and there’s a great sense of community there.

Speaker 10
20:55 – 21:07
And I think that’s really lovely. And I’m, you know, I think there’s probably other places where there’s a great sense of community, but certainly on the island, there is a wonderful sense of community, which is very supportive.

Speaker 3
21:07 – 21:23
So you’re talking about your ponies and obviously you have young people with autism that come to equine therapy or to you know visit the ponies. So if someone’s listening in and they might be from the Isle of Wight, where can they find you? Do you have any more spaces where people can book sessions?

Speaker 10
21:23 – 21:35
Yeah, absolutely. The Happy Ponies, I’ve got a wonderful colleague called Gail, Gail Yardley. So if people just Google Happy Ponies Isle of Wight, they’ll… I like that title, Happy Ponies.

Speaker 10
21:36 – 21:40
Or again, get in touch with me and we can arrange, you know, therapy days.

Speaker 3
21:41 – 21:53
So what can companies and organisations do to support their staff who are caring for someone who’s using digital technology? Because it can be quite complicated, especially if you’re not familiar with that sort of area.

Speaker 10
21:53 – 22:21
Yeah, I think I’d actually say, Anna, I think employers can do an awful lot more to support the carers in their midst. When Faith was young, I was working for a very large company. And for about two or three years, I didn’t mention to anybody that I had a daughter with disabilities. And I remember I was using up all my holiday days to take her to her many hospital visits.

Speaker 3
22:21 – 22:50
Can I just ask because I’ve spoken to so many people when we’ve done training or when we’ve taken the autumn reality experience like for example to the first responders there were so many firemen, policemen, ambulance men that had children on the spectrum but they hadn’t shared that information with their colleagues and then when they had it was almost like a big weight had been lifted from the shoulders. If you don’t mind me asking why didn’t you share that your daughter had disabilities. Is it something that you wanted to just keep very private?

Speaker 10
22:52 – 23:03
Gosh, Anna, I don’t know. That’s a question we could go and debate, isn’t it? I’m not sure. I think perhaps I thought that other people wouldn’t be able to relate to it.

Speaker 10
23:05 – 23:33
I don’t know. I didn’t want it to reflect badly, I think, on my job or that it might affect my work or whatever. But employers really do need to take note of the fact that one in nine people in the workplace will be a carer in one way, shape or form, and that anybody can be thrown into being a carer for your mother, your father, your partner or your child at any moment.

Speaker 10
23:34 – 23:45
It’s a much higher number than people think. And the added stress involved as we were talking, you know, anyone who’s been there will be nodding their heads right now.

Speaker 3
23:46 – 24:08
Yeah, absolutely. I was just reading about a young girl, I think she was 14 or 15, she was caring for her mum and her autistic brother and the pressure on that young girl and then going to school and I just can’t even imagine how she’s sort of coping day to day, but she’s doing it and she’s to be admired, but obviously she needs the support. So, you know, you read about this more and more every day.

Speaker 3
24:08 – 24:18
And I think as well, it’s because a lot of cuts within the services, the help is just not readily available or you have to fight for it as we would. discussing earlier.

Speaker 10
24:18 – 24:49
Absolutely. And employers, you know, it costs a lot of money to re-employ people and I think, you know, it can be very expensive to lose employees. So if employers were to, you know, bring in policies for carers and enable the carers in their workforce to be aware of those policies and also to allow them to have digital support tools such as MyLifeRaft to support them and the person they’re caring for. I think that would be a really good thing.

Speaker 3
24:49 – 25:06
OK, so can we just talk through, so say, for example, someone goes on the website, so it’s www.myliferaft.com. So what’s the first thing they need to do? Do they need to prepare anything or how does it work? I know obviously it’s difficult because people are listening in, but if you can make it, you know, what would you do?

Speaker 3
25:06 – 25:07
How would you start?

Speaker 10
25:07 – 25:51
It’s very simple, you go to the website and click on the try now button and then put in your details and you can sign up. The standard version of the product is free so there’s no charge and you can get started straight away. There’s a contact section which is if you want to, you’re in control of any information that you share with anybody else, that’s where you do that from. There’s an all about me section which is if you complete that section you can then go to the form section and print off a hospital passport which is all the bits that, if you go into hospital, not all about illness, particularly suitable and useful for people with autism.

Speaker 10
25:52 – 26:03
There’s various different forms in there and we are building more and more forms into it so you can auto-populate things like the disability living allowance form and many more forms will follow.

Speaker 3
26:03 – 26:10
OK, then, so if anyone gets stuck, they can contact either via a contact form or can they ring in and ask questions?

Speaker 10
26:10 – 26:23
Yeah, there’s a telephone number, but there’s also info at myliferaft.com. So any queries, concerns or anything, just email the info line or go on to our frequently asked questions page.

Speaker 3
26:23 – 26:46
Just to remind everyone, it’s www.myliferaft.com. Again, if you’d like to be one of my speakers on all things autism, please contact me via the charity website. It’s www.annakennedyonline.com. So if you’d like to speak about yourself, if you want to, if you’re a mom, whether you’re a carer, whether you’re an autistic adult, whether you’re a professional and you’d like to share your story, please contact me.

Speaker 3
26:46 – 26:58
I am booked up now until almost to the end of March with speakers. So if you’d like to come along, please contact me just to remind you www.annakennedyonline.com via the contact form. Thank you.

Speaker 5
27:01 – 27:28
Welcome to the women’s radio station supporting women’s well-being. Women’s Radio Station is all about diversity, from opinions, career, ethnicity, education, and most importantly, women’s well-being. We aim to celebrate the individuality of every woman everywhere, providing opportunities and the platform for your voice. Visit our website, womensradiostation.com, for more information.

Speaker 13
27:30 – 27:41
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27:41 – 28:00
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Speaker 9
28:00 – 28:16
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Speaker 9
28:17 – 28:28
Here you will learn more about the support you can offer, explore the doula role and think about how to set up your business. No need for previous qualifications. Find out more at nurturingbirth.co.uk

Speaker 7
28:30 – 28:45
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Speaker 7
28:46 – 28:59
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Speaker 2
29:01 – 29:15
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29:16 – 29:29
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29:32 – 29:53
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Speaker 5
29:53 – 29:57
Women’s Radio Station, supporting women’s wellbeing.

Speaker 3
30:00 – 30:10
Hi, this is Anna Kennedy. We’re talking all things autism. We’re supporting women’s well-being and we’re live and we’re in Covent Garden. My son celebrated his 30th birthday this week.

Speaker 3
30:11 – 30:24
I can’t believe it, 30. Oh my word, where does time go? Patrick’s got Asperger’s syndrome and one thing that I wasn’t expecting him to say to me was that he wanted a quiet birthday. He just wanted to be in.

Speaker 3
30:24 – 30:45
He said he wants to spend the rest of the year doing lots of different things during his 30th birthday. But one of his anxieties, which didn’t even sort of enter my head, was like, would he look different because he was 30? would people still recognize him when he was 30? And it was just, it just makes me think of how his brain is working and why he would think like that.

Speaker 3
30:45 – 31:10
But, you know, we had a quiet day and he enjoyed his presents and his cards. And then we did the usual thing, pizza and cake. And he then said at the end of the day, he said, oh, it’s actually OK, mom, to be 30. It’s just a number because I am worrying about being 60 in March and I’m It’s hard for me to say it, that I’m going to be 60, but it’s because I’m worrying as well about my sons, you know, and what’s going to happen to me, you know, what’s

Speaker 3
31:10 – 31:16
going to happen to them, if you like. So I’m just getting used to saying 60. And he says, Mom, don’t worry about it. It’s just the number.

Speaker 3
31:16 – 31:20
You’re still you. You don’t feel any different. So I say, OK, then. Thank you, Patrick.

Speaker 3
31:20 – 31:30
So he’s giving me some advice. So what do you think about getting older? I know because we’re always talking about, we’re worrying about our sons and our daughters. Have you got this sort of fear of getting older?

Speaker 3
31:30 – 31:31
I love it.

Speaker 10
31:31 – 31:57
Actually, yeah, I love being a grandmother. I think it’s a great privilege and I just absolutely just adore it. I think as you get older you can get more confidence as well and I think that’s rather nice. You know, when I was a young a young thing, I don’t think I had very much confidence at all.

Speaker 10
31:57 – 32:18
Although, I have to say that was one of the things that faith gave me was confidence, because I used to think that if she could get through her day, then I had no excuse not to get through mine. And if she could fight her corner, then I could fight her corner for her. And it can make you strong, actually.

Speaker 3
32:18 – 32:54
Can you discover strengths about yourself that you never knew that you had when you have a son or a daughter who’ve got a disability and you’ve got to fight their corner, if you like, because if you don’t speak up for them… no one else is going to do it for you so I totally get what you’re saying there because we’re trying to get the best care, the best education, whatever it is that we’re trying to do to support our children and it’s just like we don’t care who we speak to. I used to be afraid of talking to psychologist doctors and I used to think they were better than me and it’s just like no they’re not, they’re just people like us and for me it’s just like I am responsible for my son’s are you responsible for your daughters

Speaker 3
32:54 – 33:03
and we just do whatever we can to make life and navigate the world the best that we possibly can for them so that they can make their mark in the world just like everybody else.

Speaker 10
33:03 – 33:32
Yeah absolutely Anna and I also think I was listening to something on Radio 4 actually as I was coming up today up to London today And it was a lady who was being interviewed and she mentioned that she’d lost her child. And she said that it had made her stronger. And I actually can identify with that because you learn to be a fighter if you’ve had a, you know, if you fight the corner for your disabled child. But also, you know, follow it with faith.

Speaker 10
33:32 – 33:50
after Faith died, I actually gained some strength because not much more can hurt you in life. And that sounds a bit strange thing to say, I suspect, to a lot of people. But actually, I think very much she’s made me a stronger person. And I think as I get older, that strength continues to grow.

Speaker 3
33:51 – 34:15
I totally get that because one of our ambassadors and one of my friends, Paula McGowan, whose son died, Oliver, she has just become such a strong woman and fighting for mandatory training within the NHS and she’s got there and it’s happening. So she’s, you know, obviously it’s sad that she’s lost her son and she would like to have all of her back. But what she wants is she doesn’t want it to happen to anybody else. So what she’s trying to do is make a difference.

Speaker 3
34:15 – 34:30
So that’s fantastic work that she’s doing. And I’m so pleased that we’re going to be getting more nurses and doctors trained in the world of autism. So let’s go back to Life Raft. So we’re on the cusp of a digital revolution in health care.

Speaker 3
34:30 – 34:34
Do you think that people are ready for products such as Life Raft?

Speaker 10
34:35 – 34:59
I certainly think, yeah, the younger generation are. And I actually saw a lady on the train today who must have been well into her 70s who had her Fitbit on her arm. So it’s growing very, very quickly. We do a lot of healthcare exhibitions, et cetera, and there are some absolutely amazing products out there.

Speaker 10
34:59 – 35:31
I do think that there’s a risk we’re going to be overwhelmed. So I think it’s important to keep a focus. The MyLifeRough platform, it actually brings everything together and as it grows, things like Fitbits and other bits will be able to go into it so you can have one central source to keep your own healthcare information. And otherwise we’re all going to end up with about 20 bands going up our arms, aren’t we?

Speaker 10
35:31 – 35:54
So yes, it’s very exciting. For autism, I’ve seen some really good products out there which help deliver strategies, which help deliver independence to individuals. There’s a wide range of things, and I don’t think we should be afraid of it. I think it is the future.

Speaker 10
35:54 – 36:13
Faith always loved the future. She always loved watching any movie about the future and I think she’d be very impressed with what’s occurring in the world now. So did she get her diagnosis of autism quite early on or was it later on in her life? No, it kind of cracked up on us.

Speaker 10
36:13 – 36:52
And because she had hydrocephalus and spina bifida and all the challenges that that brings, she was, as I say, a paraplegic. It wasn’t noticed to begin with. I don’t know that we ever actually got a proper diagnosis even because she was already in the special needs system, if you like. It was difficult because the biggest challenge we had was that she had her physical needs, so she needed physical care and quite a high level of day-to-day caring for her physical needs.

Speaker 10
36:52 – 37:22
And what I found very difficult was then to get her the care for her autistic spectrum needs, which were often totally overlooked, which caused a huge amount of distress for Faith, and for myself as well, to watch her go through that. So I feel that I don’t know what it’s like these days, Anna, but certainly in the 90s, it wasn’t easy to get a diagnosis. Well, I didn’t find it so anyway.

Speaker 3
37:22 – 37:26
So what were her interests? What did she like to do? What was her favourite thing to do?

Speaker 10
37:26 – 37:34
She loved science fiction. She loved TV. Music? Yeah, she did love music.

Speaker 10
37:34 – 37:41
She also liked… I know that in Uxbridge there’s a… Well, there was. I don’t know if it’s still there, a dry ski slope.

Speaker 10
37:41 – 37:43
I’m not sure if it’s still there, actually. I don’t know.

Speaker 9
37:43 – 37:44
No, I don’t think so.

Speaker 10
37:44 – 38:03
But there used to be one and some people listening to this, I’m sure, will have remembered that. But anyway, she used to love anything slightly dangerous, like we’d put her into a sled and a skier would take her down the dry ski slope and she’d scream all the way down and ask for more. So yeah, she was really feisty.

Speaker 3
38:03 – 38:23
Talking about skiing, there’s a fantastic place in Hemel Hempstead called Snowbility. And I’ve been there to visit and I’m thinking of possibly taking Angelo. But they do fantastic work with people who’ve got disabilities and autistic children and adults. So if you’re interested, it’s honestly when you go in there, it’s like you’re going on holiday.

Speaker 3
38:23 – 38:33
I love it. It’s just like it’s such a huge place. But when you go in, it’s a bit like a TARDIS. You don’t expect it to be so big when you walk in and it’s beautiful.

Speaker 3
38:33 – 38:55
So if you’re interested and you’d like to do something different with your son or your daughter, Check it out. It’s called Snowbility and it’s in Hemel Hempstead and a fantastic place. So a little bit more about life rafts because I’m trying to push this for you because obviously it sounds like a fantastic tool. So how does my life raft benefit the individual in the care circle and the medical profession?

Speaker 3
38:55 – 39:04
So have you had any feedback from professionals about life raft and what sort of things have they been saying about it? Have they said you should tweak it in certain ways or?

Speaker 10
39:05 – 39:37
Yeah, we have a lot of potential for My Life Raft, which as it grows, you know, it will continue, as I say, to grow and develop. And it provides continuity of care because you’ve got one true source of information for others to refer to. So things don’t get lost in Chinese whispers. The current system is, I mean, with Faith, she’s probably had care circle of 20-odd people around her, physiotherapist, occupational therapist, speech therapist, et cetera, et cetera, et cetera.

Speaker 10
39:38 – 40:08
I had to repeat information many, many times to them, whereas if you’ve got it in the Life Raft account, you can share it, and it’s one true source of information. You can create useful reports, as I said, so you can create a report and email it to yourself or print it off and then share that report all about me or hospital passport, which is information that’s not always all about illness. Faith used to hate buttons, for example. She couldn’t stand anything with buttons, so it was important for hospital staff to know that.

Speaker 3
40:08 – 40:21
Yeah, talk about triggers as well. Of course, obviously, a lot of our children have got sensory difficulties, so it could be smells, it could be sounds. It’s just those sort of things that professionals probably don’t even think about.

Speaker 10
40:21 – 40:29
That’s right. Yeah. And I’m very pleased that they’re now doing some training for autism, you know, with the nurses. I think that’s absolutely brilliant.

Speaker 10
40:30 – 40:31
OK. And do you have users across the country?

Speaker 3
40:31 – 40:32
We do.

Speaker 10
40:32 – 40:41
We do have users across the country. We have a growing number of people subscribing. We love feedback. So, you know, we really do want to build this product.

Speaker 10
40:41 – 41:08
We want to build the product that people want. So please, please go in. create yourself an account, sign up, please use it, and then please give us feedback as well, because we can constantly improve it and make it better. Just to say, and we touched earlier on mental health, just to say, it has got a journal in it, and I think sometimes writing things down can just be really, really good for you.

Speaker 3
41:08 – 41:42
OK, just to remind people, if you want to follow My Life Raft on social media and keep up to date with updates, so it’s Twitter at My Life Raft, Facebook at My Life Raft and the website is www.myliferaft.com Again, talking about Autumn’s Got Talent, the closing date is January the 31st. We have had so many entries in. So whether you’re a singer, whether you’re a dancer, whether you’re a musician, whether you’re a magician, whatever it is that you do, show us your talent.

Speaker 3
41:42 – 41:54
It’s become huge. We’re in our ninth year and I can’t believe it. So please send us in your entries. Closing date, just to remind you, is January the 31st and it’s www.annakennedyonline.com.

Speaker 3
41:54 – 41:59
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Speaker 5
42:01 – 42:02
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42:03 – 42:07
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42:07 – 42:12
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42:12 – 42:22
Hello and welcome to Judy May Is Listening. Hi, this is Anna Kennedy and we’re at Women’s Radio Station supporting women’s well-being and we’re talking all things autism.

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42:22 – 42:27
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42:29 – 42:56
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Speaker 12
42:56 – 42:59
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42:59 – 43:24
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43:24 – 43:28
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43:30 – 43:50
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Speaker 11
43:51 – 44:01
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44:01 – 44:23
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44:23 – 44:28
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44:32 – 44:54
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Speaker 3
45:00 – 45:06
Hello, this is Anna Kennedy. We’re talking all things autism. We’re in the last quarter of the program. My guest today is Nicola Murgatroyd.

Speaker 3
45:06 – 45:27
Before I go back to Nicola, I just wanted to remind you about the Autism Expo at Brunel University, which is on March the 28th. So it’s in Uxbridge and it’s, again, we’re in our fifth year, I think it is. So we have speakers, we have stands with lots of merchandise or books or whatever it is that you’re looking for. It might be a sensory toy.

Speaker 3
45:27 – 45:38
It might be a weighted blanket. It’s a fantastic venue, lends itself very well. It’s got a coffee area where you can network with people. And also we have free clinics.

Speaker 3
45:38 – 45:52
So if you might like some information or ask some advice, it could be about behavior management. It could be about a legal query that you might like to ask. So please come along. And if you want to book your tickets, it’s ten pounds online.

Speaker 3
45:53 – 46:21
Again, it’s the Autism Expo at Brunel University. If you check out the events page on Anna Kennedy online, You’ll see all of the information on there. We’ve got Katie Price as well that’s coming along who’s going to be talking about her journey with Harvey who’s now one of our ambassadors and we’re going to be doing more filming as well throughout the year with Harvey talking about autism and Katie’s going to be talking about some of the things that she’s gone through with Harvey, difficulties.

Speaker 3
46:21 – 46:34
So, Nicola, again, thank you so much for coming, all the way from the Isle of Wight. So, where can you see Life Raft in five years’ time? What would you like to happen, or what can you see happen?

Speaker 10
46:35 – 47:12
I’d like for my Life Raft to have empowered people to take more ownership and control over their healthcare. And through that, us managing to streamline the systems a bit more so everything isn’t quite such a fight as it currently is and for appropriate resources to reach down to people as well because MyLifeRaft is a platform that can push information out but pull information in as well. So it has great potential to make things and to make life easier and to support people

Speaker 3
47:13 – 47:21
We were chatting about Faith and her siblings and I was just wondering what was their relationship like? I’m always interested to find out.

Speaker 10
47:21 – 47:57
They were amazing, I have to say, all through Faith’s life. They stood back and they allowed me to do what I had to do, and they were really great. But what I did find was that after Faith died, even though they were pretty grown-up people by then, Unbelievably, they had stored up a huge amount of, I think, emotion and emotional need, which then became apparent. And I’ll go back to what I was saying earlier.

Speaker 10
47:57 – 48:26
It’s a really difficult thing to balance the needs of the whole family when you have a member of the family who has additional needs and extra special care needed for them. But it’s really important to take time out with each child and to let them have some way to unload their emotions and their thoughts on it all.

Speaker 3
48:26 – 48:28
Was there much of an age gap between them?

Speaker 10
48:28 – 48:54
No, my son was 17 months younger than Faith. I remember being told by a doctor actually, you know, when they didn’t think that Faith would survive, you know, to a bit of an old-fashioned view, I suppose, to go and have another baby and that’s exactly what I did. And then my youngest daughter is four years younger than that.

Speaker 3
48:55 – 49:07
So I suppose they bottled everything up because they didn’t want to give you more pressure, because obviously you were looking after Faith and her needs were great. So I suppose, do you think they might have thought of, or better not disturb Mummy?

Speaker 10
49:07 – 49:22
I’ve never asked them, actually. Quite possibly. I don’t know. I just know that they were quite quiet about it all.

Speaker 10
49:22 – 49:34
I suppose that perhaps they thought it was normal. It was normal for them, I suppose. Although, when they went to school, perhaps they realised that other people didn’t have faith in them. Maybe they chatted to their friends, you don’t know, because you’ve got a Waffle Lord somewhere, haven’t you?

Speaker 10
49:34 – 49:36
Yeah, I don’t know.

Speaker 3
49:36 – 49:58
Yeah, we were chatting about my son Patrick, obviously, you know, he found it difficult because obviously Angelo’s needs are quite great that he remembers things that, you know, I remember this or I remember that and I remember like a particular incident about swimming that you weren’t with me in the big pool, you were with Angelo in the smaller pool and why were you there with him and not with him? And I said, because Angelo can’t swim. It’s just like something as simple as that.

Speaker 3
49:58 – 50:32
But it’s just like funny how they hold on to little things that they remember. And yeah, so. yeah it’s all it’s all part and parcel of family life of living with someone with a disability and to try and juggle so many different balls and obviously being in this system so i always ask people what do you do to relax and the reason being is that i feel that A lot of us parents that have got children and adults with disabilities find it difficult to relax because you feel that you have to be there all the time or you have to be there to support them, particularly when they’re younger and you tend to

Speaker 3
50:32 – 50:44
forget about yourself and then, as a lot of parents we were talking about, burn out. So what do you do to relax? What do you do to help yourself think, right, this is Nicola time. What do you do during Nicola time?

Speaker 10
50:45 – 51:19
Well, Anna, I think you just said when Faith was alive, I actually didn’t have any Nicola time. And I think there’s probably many listeners out there who are in that situation now. But what I would say to you is even if you can just grab two minutes in a day, whatever it is, you know, to set aside some me time is really important to recharge those batteries a bit if you can. because it is easy to burn out and then, you know, what you say to the person you’re caring for.

Speaker 10
51:20 – 51:37
It’s very, very hard though. And I don’t remember having much me time, actually. Because, you know, you’ve got other things as well. There’s, you know, the usual things like, you know, work and looking after the house and stuff.

Speaker 10
51:37 – 51:45
And all of our lives are cramped full and busy. So somebody who’s a carer, your life is double, treble, 10 times that.

Speaker 3
51:45 – 51:47
So what do you do now to relax?

Speaker 10
51:47 – 51:59
Now, goodness me. Now I love to be busy. I think that’s a bit of a legacy because I just can’t sit still. I just love to be busy doing things.

Speaker 3
52:00 – 52:05
I found it hard over the Christmas holidays for me. It was just like, okay, a week’s enough now. Let’s get back to work.

Speaker 10
52:05 – 52:36
Yes, it’s sort of my own therapy, I think. But also I have my ponies and they are fantastic. And as I said, they are just very perceptive creatures and they’re miniature Shetlands. But I also like to have a little bit of danger in my life and I’ve got a 12.2 driving pony and my friend Gail and I, we go out carriage driving and go for a good gallop around the farmlands.

Speaker 10
52:36 – 52:37
That lets off a bit of steam.

Speaker 3
52:37 – 53:13
I bet you see some special moments when some of the children are with the ponies because I remember when we go to Kilmarnock there’s a quite a few autistic children that wouldn’t even go anywhere near and then there’s just a special moment that you’ll just see they’ll hold out their hand to touch the pony’s nose and they’re so patient and I took Angelo there and because Angelo sometimes get a little bit excited or he might squeal I thought that the ponies might gallop away but you know what they’re so patient and they were just standing there and just letting Angelo do his thing and then He’d see all of a sudden, he’s probably thinking, oh, so they’re not that bothered then. So they just stand there and be patient.

Speaker 3
53:13 – 53:15
So do you see many of those special moments?

Speaker 10
53:15 – 53:25
Absolutely. Yes, we do. We we absolutely do. We let them dress the ponies up and and plait their manes and tails and the ponies just stand there.

Speaker 10
53:25 – 53:42
Sometimes we just let the ponies wander around loose. and they just gently nuzzle the children. But we have had many, many times when a child who finds it difficult to communicate with people can communicate actually with the pony.

Speaker 3
53:42 – 54:14
It’s very special. We’ve had a couple of afternoon teas as well with the ponies that she’s arranged there at Kilmarnock Horse Rescue which has been quite special where parents can just sit, have a cup of tea and cake while the donkeys and horses are just wandering around in between and the children are there and being occupied so that’s quite special as well which I really enjoy going to. So again, just to remind people that if they would like to find out more information about My Life Raft, it’s www.myliferaft.com.

Speaker 3
54:14 – 54:26
On Facebook, it’s My Life Raft. On Twitter, it’s at My Life Raft. And then again, if you want to email, it’s info at my life raft dot com. It’s been fantastic talking to you.

Speaker 3
54:27 – 55:01
And I’m going to have a check. I have had a little look at my life, but I haven’t actually gone into depth. So I might create something for Angela because I think it’ll be quite useful for him and not having to keep repeating every time I go to the GP or whatever it is that I’m going to. because at the moment Angelo’s got tooth pain so we have to go and see a special needs dentist and I’ve tried to make an appointment but because obviously these GPs and dental doctors are far and few between he has to wait till February the 7th to see the

Speaker 3
55:01 – 55:22
dental doctor. And I just thought, how would you like to wait with a toothache until February the 7th before you can see someone? And then obviously he’s not going to get it treated straight away because with the difficulties that Angelo’s got, we have to go to somewhere like Guy’s Hospital or we’ve been to somewhere like Milton Keynes, which is like 55 miles away from where we live. And he has to have a general anaesthetic.

Speaker 3
55:22 – 56:00
And then obviously they clean his teeth and they do whatever it is that they’ve got to do. So those are the parts that I find really frustrating and I just think that it should be somehow changed and prioritise young men like Angelo where they can’t express how they feel due to their minimal verbal skills that look mom this tooth is really killing me and it’s if I hadn’t noticed that he’s sort of sucking his cheek into the side or pointing to it and we have this thing where I say to him, Angelo, would you like some medicine, meaning paracetamol, because the only way I can get it down him is in a yogurt. So I have to break it in half and put two halves in one side of a fromage frais and two halves in the other side of a fromage.

Speaker 3
56:00 – 56:16
And if he doesn’t repeat back the word, then I know he doesn’t want the paracetamol. It’s not that bad. So we have got that relationship with trying to help him deal with pain. But again, I just wanted to say thank you for coming along from all away from the Isle of Wight.

Speaker 3
56:16 – 56:17
Is there one last thing that you wanted to say?

Speaker 10
56:17 – 56:28
Yeah, well, a big thank you, Anna. I’ve enjoyed it. And thank you for having me as your guest. But one thing that my life craft can do for people is give them a voice in their care.

Speaker 10
56:28 – 56:37
So hopefully you’ll sit down with Angelo and go through it with him. And you it could be quite rewarding because he will tell you what he wants.

Speaker 3
56:37 – 56:51
Well, that’s fantastic. Thank you so much. Again, if you’d like to be one of my speakers on supporting women’s well-being in all things autism, please contact me via the charity website. It’s www.annakennedyonline.com.

Speaker 3
56:51 – 56:59
You can contact me via Twitter at Anna Kennedy One, Anna Kennedy Online on Facebook, Anna Kennedy OBE on Instagram. And thank you, everyone. Have a great week.

Speaker 5
57:02 – 57:29
Welcome to the women’s radio station supporting women’s well-being. Women’s Radio Station is all about diversity, from opinions, career, ethnicity, education, and most importantly, women’s well-being. We aim to celebrate the individuality of every woman everywhere, providing opportunities and the platform for your voice. Visit our website, womensradiostation.com, for more information.

Speaker 13
57:30 – 57:41
I’m Tamina Zaman, founder of Empower & Enrich. When it comes to money, do you clam up or get confused? Do you wish you could save more money, or are you hoping you have enough for retirement? You are not alone.

Speaker 13
57:42 – 58:00
Many women want to be smarter with their cash, but just don’t know where to start. At empowerandenrich.org, you will find a host of options to help you take charge of your finances and learn how to put your money to work for you in an easy, affordable way. Get in touch with me at empowerandenrich.org, and let’s change your future together.

Speaker 9
58:00 – 58:17
Do you want to be a doula? Would you like to support families through pregnancy, birth and the postnatal period? Do you have qualities of compassion, listening, caring and empowering? At Nurturing Birth we offer approved doula training courses across the UK which are facilitated by an award-winning doula.

Speaker 9
58:17 – 58:29
Here you will learn more about the support you can offer, explore the doula role and think about how to set up your business. No need for previous qualifications. Find out more at nurturingbirth.co.uk

Speaker 7
58:30 – 58:45
Hi, I’m Carolyn Van Beers. Please join me for a brand new show here on Women’s Radio Station. It’s Mother’s Hour. If, like me, you’re a mum juggling far too many balls and dropping most of them, this is definitely the show for you.

Speaker 7
58:46 – 59:00
We’ll examine the highs and lows of motherhood and make sure you laugh out loud as we take on this challenging role together. With spoonfuls of advice, incredible stories, it will be a refreshing, honest and funny look at being a mum.

Speaker 2
59:01 – 59:16
Are you struggling with money? Turn to Us is a national charity helping people struggling to make ends meet. Job loss, illness or bereavement can cause a real financial crisis. We give practical help to get people back on track.

Speaker 2
59:17 – 59:29
Whether you’re thinking of having a baby, trying to get out of an unhappy relationship or just unsure what benefits you may be entitled to, we can help. Visit turntous.org.uk

Speaker 5
59:32 – 59:53
Welcome to the Women’s Radio Station, supporting women’s wellbeing. Women’s Radio Station can give voice to your brand with a wide range of sponsorship opportunities, including individual programmes. We can tailor your experience for you. For more information on how you can sponsor a show, go to womensradiostation.com.

Speaker 5
59:54 – 59:57
Women’s Radio Station, supporting women’s wellbeing.