[Speaker 1] (0:00 – 12:06)
Hello Anna, this is Anna Kennedy. We’re talking all things autism. We’re live.

We’re in Covent Garden and my guest today is Bernadette O’Donnell. Before I go over to Bernadette, just want to let you know what a fantastic Charity Autism Hero Awards we had on Saturday at the Chelsea Harbour Hotel. I’m going to read out to you and congratulate all of our winners.

So the Outstanding Education Award was Joel Meller. Sibling of the Year Award was Saray Marius. Creative Arts and Media was Noah Liu.

Lifetime Achiever Tanya Phillips. Young Person of the Year Jaden Worthington and Morgan Smith, that was a tie. Outstanding Community Award Jane Lorde.

People Autism Hero Award Richie Smith. Parent Carer Award Kenny Elvin. Personal Achievement Award Charlotte Banfield.

Leading Business Award Portland College. Online Social Network Award Laura Price. Entrepreneurial Award Rebecca Taylor.

Special Recognition Award Leo Andrade and Charity Volunteer of the Year Coral Kennedy. All of our winners were so worthy and the highly commended outstanding achievement winners were also there. It was so emotional, lots of tears and such a lovely event.

So we are going to be sharing again. If you want to nominate someone that goes the extra mile for 2020, we will be again going to the Chelsea Harbour Hotel. It’s going to be held in November and keep watching out on the Charity website www.annaKennedyOnline.com.

If you would like to nominate somebody that goes the extra mile. So welcome Bernadette. You have come all the way from Ealing to see me today.

Thanks very much Anna. Thanks for inviting me. That’s great.

So just a little bit about you. So you worked in the NHS for 25 years in a GP Computing and Emergency Planning. You was headhunted in 1995 and moved to West London.

You met your husband at work and you got married in 1998. You have got two boys, Kieran who is 17 and Daniel is nearly 16. Kieran was diagnosed with Autism when he was 2 years and 7 months.

So tell me a little bit about who is Bernadette. Where were you born and what have you been doing all this time? Well I was born in South London.

My parents are Irish and we moved to Clackton on Sea when I was 5 years old. I grew up in a very happy, close community. In a Catholic community which is quite relevant to how I live my life today because it taught me different values.

It helped me to think the way that I think which has really supported me since Kieran’s diagnosis. I have got two brothers, one sister. There are 2 years and 10 months between the 4 of us.

My mum and dad are super speedy. I worked in the NHS as you said for 25 years. What kind of a job did you have?

What was that all about? I started off in admin and I worked my way up. I was doing GP Computing in Clackton and all of Essex.

There was a new initiative that came from the government to electronically connect all the GP computers to the mainframe. I was doing such a sterling job in Clackton I was headhunted up to Ealing. A big difference from Clackton to Ealing.

I know my mum and dad were like, oh my gosh you can’t even drive in Clackton. I had about 8 copies of the A to Z given to me as leaving gifts because I just get lost even looking in the mirror. What I did when I came to Ealing, I worked in Ealing, Hamsmith, Haslow and Fulham in the GP practices.

Connecting them electronically and working on encryption projects so that we could have electronic records during the policies for that. Unfortunately with all the bombings and things that were going on, civil contingencies came in and we had to have emergency plans and business continuity plans. I started off in that role because I had done the year 2000 planning.

I moved over to that which emergency planning will really help us if you’ve got a child with autism. So talking about autism, tell me a little bit about Kieran and how old is he when he got diagnosed? Kieran is 17 now.

He was diagnosed at 2 years and 7 months. That’s quite early. It’s very early.

Kieran is my oldest child and I think if I’d had Daniel first maybe I would have picked up on some of the signs. However, I was blissfully unaware. He wasn’t talking at 18 months so we went to the health visitor and she said come back when he’s 2.

Something that was interesting is she said does he know his body parts and I thought that’s a strange question and who would I know? So she told me to do things like head, shoulders, knees and toes with him. What I picked up from that is that he couldn’t actually copy.

But that didn’t mean anything to me. There were no warning bells. So 2 years we went to see the health visitor again and she referred us to a speech and language therapist.

And the speech and language therapist referred us to the child development team. But nobody would use the A word and I absolutely had not a clue that he had autism. Have you ever heard of autism?

Well I’d heard of it because there was a big hoo-ha about the MMR and whether children should have the MMR or not. So it was being discussed but I think possibly I was in denial and maybe if I thought about it a bit more I might have picked up on it. But I didn’t and when we went to see the pediatric consultant she was very clear and she diagnosed with autism and I’m still shocked.

It was 15 years ago but I can still feel that train plummeting through my stomach and I just could not breathe because I can’t believe that he has autism and it was a shock. But on retrospect looking back at who he was and how he was and then how his brother Daniel developed because there were 15 months between them. There were very clear indicators.

I think it’s difficult when it’s your first as well because obviously you’ve got nobody to measure them against and then they always say boys are a little bit late developers. Those are the sort of things that I was told as well when my sons were younger. And it was the fact that Daniel had arrived and people say well they regress when you get another baby in the family.

So those are the signs that I was thinking well maybe it’s because we’ve got this new child and he’s feeling jealous. And I remember my mum saying to me that when we were small because we’re so close together that she would say to the older ones can you get mummy a nappy or can you get the baby’s bottle. But if I said that to Kieran, no nothing.

There was no communication there with Daniel. OK so once your son received the diagnosis how was the support after that? Did you get anything?

We got a photocopy of a leaflet indicating and signposting us to support that was non-existent. And we very helpfully fell through their net and we didn’t get seen again by the pediatric consultant till Kieran was nearly five and that’s because my doctor pushed for it. But it was OK because we had slipped through the net so apparently that’s quite acceptable.

So did he go to nursery? He went to preschool which was absolutely fantastic. They were fantastic with him.

And then he went to a mainstream nursery and they were not fantastic with him. And I actually took him out in the end because it was just such a traumatic experience for him and for me. They were phoning me every day to come and collect him and I’ve got a full time job.

Yeah I’ve spoken to so many parents that still happens now. I know and it’s just you’re scared, your heart’s broken, you’re crying, you’re looking at all these God forbid me for saying the word normal children. You’re wondering why that’s not your child and you’ve got no support from education or speech and language or occupational therapy or your clinical psychologist or anybody at all.

And it’s frightening and it’s a minefield and your heart is broken. It’s a minefield as well because obviously when my sons were diagnosed I didn’t know what an occupational therapist did. I didn’t know what a speech and language obviously itself.

But it’s just it’s like a lot of things to take on board as well as your son’s diagnosis and like to get your head around it. And then obviously you’ve got to tell your family. But as I always say they’ve never changed.

They’re always the same. But it’s just that they have a diagnosis. And what’s diagnosis like now and healing?

How long do people have to wait? Well you can wait up to three years for an appointment appointment with healing hands. And you know they’re understaffed and under resourced and I understand that I really do.

However children aren’t children for very long. And if you’ve got a five year old you’re concerned about they’re a very different child at eight when they’ve lacked three years of support. So something needs to change.

Most definitely we’re just going through another assessment at the moment because obviously my son was diagnosed quite early on at four. And now as an adult he’s completely different from when he was there. So we’re going through an updated assessment.

The paperwork is just like mind blowing. I think there’s five different paper pieces of paperwork that he’s got to fill out with seventy questions on each. And it’s causing so much anxiety.

And I’ve got to fill out and my husband another six pieces of questionnaires whatever you want to call them. And again sixty seventy questions on each of them. And I thought there must be an easier way of diagnosing someone without going and the anxiety it’s causing.

And you know I know obviously this is the process at the moment but I just think I’m just thinking there must be a different way of doing this because it’s causing him anxiety because he’s looking at each question, questioning himself. Do I do this? Do I do what you know what I mean?

And it’s almost like his confidence is not so great at the moment with. Yeah. Yeah.

There must be a different way of doing it. But I’m just going to say that for the minute. But you also have to think those seventy questions somebody needs to use that data and record that data.

And what are they actually really realistically doing with that data. So there needs to be an easier way especially with technology being what it is. So you’ve written a poem and if you don’t mind I’d like you to read it for me.

And it’s called I Am That Parent. You see her standing head in hands tears like a waterfall flow. Her child is screaming with torment because he is being taken somewhere he doesn’t want to go.

You see him struggling to hold his boy as the child kicks and thrashes and bites his daddy trying to soothe his son while strangers pass by shaking their heads. She is crouched on the ground holding her child, stopping her daughter self-harming, begging the little one to please stop, be calm. But the child is so distressed she can’t hear her.

You see him kneeling on his knees, begging his God for a cure, quietly praying but shouting inside. Why him? Why me?

Why this? You see her crying holding her child, a public meltdown too far, one look too many, no sleep for weeks, all that is left is despair. You can hear her all the under breath comments, see all those knowing looks, so many people judging the parents, time to pass comment but not offer support.

You see them about every day, doing their very best to love, to support, to understand their child in a society that seems to care less. But you don’t just see her and you don’t just see him, you see me, I am everywhere because I am walking amongst you because I am that parent. Thank you for that, I’m sure that will resonate with a lot of parents listening in.

Again, if you would like to be one of my speakers on All Things Autism, please message me on www.annaKennedyonline.com and we’re ready to go to the second quarter. Welcome to Women’s Radio Station.

[Speaker 2] (12:06 – 12:16)
I’m Sarah Louise Ryan and welcome to Love Lessons Live on Women’s Radio Station. Hello and welcome to Future Classic Women Awards with me, Stephanie Passamonde on Women’s Radio Station.

[Speaker 1] (12:16 – 32:42)
Hello and welcome to June May is Listening. Hi, this is Anna Kennedy and we’re at Women’s Radio Station supporting women’s wellbeing and we’re talking all things autism. Women, the possibilities are endless, that’s what makes us different.

Hi, I’m Lauren Mishcon, I’m a birth doula and mum of three and I’m passionate about supporting women to have empowering and positive birth experiences. Please join me for my brand new show from Tummy to Mummy here on Women’s Radio Station. Every week I’ll be here with an expert guest talking about women’s reproductive health, everything fertility, pregnancy, birth and baby related right through to the menopause and beyond.

Please join us for an informative and fun hour. My name is Ingrid Marsh and I host the radical wellbeing show supporting women’s wellbeing. On my show I bring you ordinary women like me and you who are sharing their unique stories.

Women who have refused to be defined by their pains to be silenced by stigma or crushed by stereotypes and who are taking back their power. And together, our mission is a simple one and that’s to inspire you to kick away the roadblocks too, to don your wings and be the person that you were born to be. Hi, I’m Hazel Butterfield, a blogger, book lover and mental health advocate and you can listen to my show Get Booked here at Women’s Radio Station daily at 5am and 5pm.

Throughout my shows we’ll talk about the books I’ve read, new releases, chapter authors, publishers and book enthusiasts, all with a theme and aim of supporting women’s emotional wellbeing. If you have a book to tell us about, get in touch at presenters at womensradiostation.com, join me on my show and share my love of books and writing. At Nurturing Birth we offer approved doula training courses across the UK which are facilitated by an award-winning doula.

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Hello, this is Anna Kennedy, we’re talking all things autism, we’re live, we’re in Covent Garden and it’s a bit of a wet afternoon. This week is anti-bullying week and we have had a charity campaign campaign about we say no to bullying for almost about five or six years. I don’t change the strap line because everyone recognises give us a break.

The poster has been created by one of my charity patrons, Ryan Wiggins, and there’s lots of people that have been downloading the poster and sharing their own message. So if you’re interested, please check out the charity website on events, you will see a give us a break. You can download the poster and please share your photograph.

You can tag me in on Twitter at Anna Kennedy One or Anna Kennedy Online on Facebook or at Anna Kennedy OBE and share the poster to say that we are together, stronger together and we say no to bullying. I just want to read just a couple of our winners and why the judges, I don’t know how they chose the winners because there were so many worthy winners but our lifetime award was Tanya Phillips. She has battled autism and Asperger’s all her life along with being partially sighted and partially deaf.

Tanya is a single mother to two children, one having cerebral palsy, a heart defect and autism. Having left school with no qualifications, Tanya now has three degrees, a bachelor of our honours in education and a bachelor of science in psychology and is currently working towards her third PhD in health and social care. Go Tanya.

Tanya’s key focus is recognising prisoners with autism and designing a framework to rehabilitate those identified to not re-offend. Tanya was a recent winner of the Ursa Award and a presenter to the Ministry of Justice and Tanya most definitely flies the flag for autism. So tell me a little bit about your brother, not your brother, your son Daniel whose brother to Kieran.

How did they get on? They get on famously. I would tell you a little bit about my brother but his head’s already very big.

So there’s 15 months between Daniel and Kieran and Daniel being the younger brother has often had to step up and take the role of older brother. Although I have tried really hard not to let that happen. So Kieran’s flavour of autism is very, very severe.

He’s non-verbal and has some extremely challenging behaviour which Daniel sometimes has been at the raw end of and Kieran’s a big lad. The great thing about the pair of them is because they are so close in age, Daniel’s a big lad too. So he can look after himself but of course there’s the emotional side of things.

And Daniel is a small boy. If he was getting Kieran’s clothes ready he would always colour match Kieran’s clothes to make sure that Kieran was dressed nicely and looked very well. He wouldn’t just grab a pair of trousers at the t-shirt, he’d make sure that he looked really, really nice.

But they’re teenagers now and Kieran looks to Daniel for support, for emotional support and he’ll want Daniel to have his arm around him and Daniel will be trying to look at something on YouTube or something. But he has always got time for him. The things that have worried me along the way obviously with the aggressive behaviour and challenging behaviour is how that affects Daniel’s wellbeing.

We took Kieran to the psychiatrist when he was 10 because his behaviour suddenly became very extreme and I decided after. So I was just going to say because for people who were listening what does that mean, extremely behaviour? If you don’t mind sharing.

Oh I’m quite open if I can help somebody. His behaviour changed in as much as he was biting me, headbutting me, pulling my hair, pushing me with his feet, not kicking, headlocks and he would attempt to do the same to Daniel if I wasn’t about but it was generally me. He would also bite his own arms, headbang the wall, headbang the floor, any hard object, he would scratch himself and very, very distressed.

You must understand all of these behaviours are a communication. He’s not a bad lad, he just can’t communicate verbally. It’s frustration.

It’s so frustrating. I can’t even imagine because I never stop talking what it must be like for him and Daniel was witness to all of this. I’m not joking if I tell you that Kieran could almost fly across the room and attach himself to me with his teeth and I did a lot of research and reluctantly came to the decision that we needed to medicate Kieran to help to do anxiety.

So I went to the psychiatrist and asked her this and she was saying oh well what about Kieran’s long term mental health and I said absolutely but what about Daniel’s long term mental health because he’s nine years old and he’s recording a brother he loves attacking a mother he loves. So let’s think about that for a moment because although Kieran has the autism and it’s his diagnosis, Daniel is his sibling and Daniel is part of this too. We’re a family, we’re a unit of four and everything that happens to Kieran happens to all of us.

I’ve been really clear along the way that Daniel isn’t Kieran’s carer. Lots of people have said to me oh you should get him to be a young carer but he’s not his carer, he’s his brother. I didn’t breed him to look after his brother and Daniel has, I’m sorry I go off on tangents, that’s me, but Daniel has often said to me what happens if I want to go and work in America.

I said well go and work in America, thank God for technology, you can FaceTime Kieran. Kieran will be living in his own independent life in as much capacity as he possibly can but he’s not your burden, he’s not your responsibility in the same way that my brothers and sisters aren’t mine but you are his brother and you will always look out for him and that is it. That’s what I said to Patrick, you must look out for Angelo, I’m not saying you’ve got to care for him but you need to look out for him to make sure he’s safe because he’s not going to be able to verbalise to you that he might be being abused or he’s not being looked after properly.

It’s for you just to check to make sure he’s okay. Yeah, have decent shower gel and things, you know, we don’t want to have, or any other product, but you know just to make sure these clothes are decent and they’re clean and he’s happy and his room’s clean and things like that but he’s not his keeper and the two of them, they are like yin and yang and I’m lucky they’re the same age because we could do visits to the zoo and swimming and different things like that at the same time but it’s given them a bond and I’ve always been clear autism is not an excuse. So tidy up time, tidy up time for everybody and here and it would be hand on hand, whereas Daniel would have to sort his own stuff out.

So how did you get on like in school holidays because obviously it sounds like very much like you’ve got two sons that are the opposite like Angelo’s at the very obviously he needs support, always going to need one to one where with Patrick, you know, he wants to do his own thing and all the rest of it so it is difficult because you like pulled in two different things. I remember when the health visitor came around just after Kieran’s diagnosis and she said to me, are you happy with the diagnosis? And actually yes, we were so happy we held a party.

What a strange word to use. No, we weren’t happy. And then she pointed to Daniel with her bony finger and said, oh and him, has he got it?

And I was like, for goodness sake, what on earth does that mean? Is it contagious? Anyway, she said to me, oh you won’t be able to take Kieran here and you won’t be able to do this and you won’t be able to do that and it all sounded so negative and I’m fortunate I’m an older mother.

And I thought, don’t tell me I won’t be able to do anything. How am I going to do this? Because Daniel needs his childhood and that’s what we’ve done and we’ve been everywhere.

We’ve been to New York and we’ve been to Canada and we plan everything around. It’s like military planning, honestly, you know. So it’s trying to ensure that Daniel’s had his childhood but Kieran’s had a childhood.

I have a lot of guilt about the things that Daniel’s missed out on. School functions like Halloween parties, things that I couldn’t take Kieran to because he couldn’t tolerate it. And I used to think to myself, surely one of the other mothers in the school must realize I can’t take Daniel.

Why wouldn’t somebody offer to take him? But I just couldn’t ask. I don’t know if it was a fear of rejection or a fear of I’m not asking people for support.

And I kept Kieran in a McLaren’s buggy because that way Kieran didn’t want to go somewhere, he wasn’t going, he won’t go to movie, but in a buggy, yes he was. And that way Daniel could still have exposure to things. But now it’s different because Kieran has very extreme behaviour.

I can’t take him out on my own anymore and that really upsets me because we are sort of in lockdown in the holidays and it’s very isolating. We get respite for a couple of days but that transpires to four hours each day and I have two hours of driving to enable us to have that. So it’s not really respite because there’s a lot of driving in London.

There is some support though. My friends are so good. My friends know that I can’t go and get a loaf of bread and they will come and get me a loaf of bread.

Some of their extended family are not supportive. They don’t even talk to them or they criticise them or whatever and it’s just like we need support. For us, Kieran went to special school, special bus and if any functions at school you don’t mix with the other parents because you’re just holding onto your child to make sure they don’t escape.

Daniel went to mainstream school, mainstream parents, mainstream events. So I’ve got two sets of friends. I’ve got my autism parent friends and then I’ve got my mainstream friends.

But now that all the children are older, they’ve actually merged. Those two groups of friends have merged. So if I had an only child of Kieran was all alone then I wouldn’t have had that level of support that I got from Daniel’s group of friends.

And I think that’s a big risk for parents because it is isolating. I believe you set up a Facebook group so if people are listening in and they live in the healing area, where would they look for it? It’s just on Facebook and it’s called Autism A Parents Advocate and I help people all over the country actually.

Is there a number that they can ring or is it just on Facebook? It’s on Facebook but if they private message me I will message them. Can you just remind us of the title of the group again?

People might be looking for a pen. Autism A Parents Advocate. Okay, thank you so much.

So you actually fought for respite and we’re going to talk a little bit about that in the actual next quarter. So are you on other social media or is it just Facebook? I’ve got a YouTube page as well with videos of Kieran and Daniel so that other people can see that actually these children are very able.

You just need to put the rights in place for them too. Okay, so where would they find the YouTube link? Bernadette O’Donnell.

So it’s just Bernadette O’Donnell on YouTube and they’ll be able to find you there. Oh that’s great. So again if you’d like to be one of my speakers on Elvings Autism, please message me via the charity website and also sign up to our newsletter.

You’ll be updated on all the things that we are doing. We’re working now towards our Christmas event which is in December. We work alongside Send which used to be called Hillingdon Dads but now it’s called Send Family Support.

So that’s going to be happening in December. So all the places are now booked up because we did it last year and it was so successful. So we have Father Christmas, we’ve got a Christmas market, we’ve got more profoundly affected children that are coming a little bit earlier in the morning so they can have a little bit more time and then the children and siblings can come together a little bit later in the afternoon and it’s such a wonderful event.

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We aim to celebrate the individuality of every woman everywhere providing opportunities and the platform for your voice. Visit our website www.womensradiosation.com for more information. I’m Tamina Zaman, founder of Empower and Enridge.

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Hello, this is Anna Kennedy. We’re talking all things autism. My guest today is Bernadette O’Donnell and I just want to read another one of our winners, the sibling of the year award, which was Saray Marius.

So Saray has two brothers aged 35 and 12. Both are diagnosed with autism. Saray was a constant supporter of her older brother looking out for him and helping her mum when she became a single mum.

Saray never complained and never treated her brother any different which is why he is so independent today. When Saray was 21 her mum found out she was pregnant and her youngest brother not only diagnosed with autism but had cerebral palsy. Saray will watch the same film with her brothers repeatedly and listens to their constant singing.

She will rearrange work to attend their appointments with her mum and never objects when missing out on an important mother daughter time if it has to be cancelled. Saray’s mum thinks she is one in a million and I met her on Saturday with her brother and they’re such a lovely family. So Bernadette, thanks again for coming along to speak to us.

So can you tell me a little bit, if you don’t mind, about managing challenging behaviour in the community and the public? Our type of challenging behaviour is aggression and anything can trigger challenging behaviour. It could be a dog barking, somebody coughing, a sneeze, a smell, a cigarette.

It’s obviously sensory issues. Absolutely, and it’s instant. We can go from 0 to 60.

We can go from jogging along and singing to suddenly head butting, biting, sort of low growling. And the first thing is, oh my God, what are we going to do now? Because we have to stay safe.

We all have to stay safe. And if Kieran decides that he wants to lie on the ground and bang his head on concrete, that’s pretty scary. But he could also headbutt me and I need to be able to keep him safe.

He has in the past grabbed my head and hit it against the side of a van and I now have to drive him home. And so this is one of the reasons that I no longer take him out on my own because of the risk. So do you go to certain places that you know that he’s comfortable?

Like, I go to different parks with Angelo. There’s nowhere for us to go because, you know, life is unpredictable and we can go with my husband. He’s absolutely brilliant.

I think probably because my husband’s bigger than him and he feels safe. But it’s still the issue with dogs barking and children crying. So I don’t go with him.

So does he wear EF defenders? He won’t wear EF defenders. Angelo picks all the stuff in at the EF defenders.

[Speaker 2] (32:42 – 32:43)
There’s just no point.

[Speaker 1] (32:44 – 34:36)
He does wear a weighted jacket, which is absolutely brilliant. And they’re quite expensive as well. Oh, my God, yes, over 100 pounds.

But worth it. He is the general public because they all know better than I do. And they’ve all got worse of wisdom and they’ve all got that lovely knowing look.

And the thing that’s really been difficult for me along the while is how it’s affected Daniel. Because as Kieran was smaller and I could manage his behaviour and I would have to sit on the ground with him and put my arms around him and be soothing and calm and really try and stay calm to keep him safe. And that’s hard to keep calm.

It’s so hard to keep calm. Because they’re sort of in tune with the way that you feel. It’s one of the greatest things I learned in the early years was just to try and keep calm and it did take me a long time.

Because as I said earlier, you’re doing everything with a broken heart and you haven’t slept for like 15 years. So you’re so tired. And although not everybody is looking at you, you perceive everybody’s looking at you.

But while all of this is going on, I had a little boy standing next to me and everybody was looking at him. And I think that’s the collateral damage. I think they are the innocent victims of all of this because Kieran was being taken care of and Daniel wasn’t being taken care of in the same way.

So when now, if I am out with him and if he does become distressed, I do just try and stay calm. And if people do offer to help and sometimes people do offer to help. Yeah, there are some kind people still out there.

If I think in a way that they can help, I will accept that help. But if not, I’ll just say thank you. Do you carry anything with you?

Like a little car to say my son has autism because obviously I’ve been working as well with Autism Anglia. They’ve got these passports that they put together, which are fantastic. I’ve got one now for Angelo.

So sometimes you do need to carry something.

[Speaker 2] (34:36 – 34:37)
I have.

[Speaker 1] (34:37 – 39:54)
I have got some cards that have got. Yeah, he has autistic. But I think because now so many people have been made more aware of autism in kind of shows.

I never forget the first time somebody said to me is the autistic. And I was like, oh, my God. But it does.

It does show. So, yeah, we do have that. And I will say to people, he has autism.

And I really do now because I’m a vintage mother. I can keep calm. I didn’t used to.

So the constant battles and the person, the professionals have made you and me. Can you sort of look back at yourself and think, wow, I’m not the same person I used to be. I can’t even remember who I was.

I can’t even remember who I was. I’m sure I wasn’t this fiery beast that they’ve turned me into. It’s so, so difficult to get professionals to listen to you.

I had a clinical psychologist come to the house and she said to me, oh, I know what it’s like. I’ve got a teenager at home. I thought you do not know what it’s like.

You don’t know what it’s like to have a child screaming for four hours and you can’t touch them. You don’t know what it’s like to be hit and kicked and bitten by your child. You don’t know what it’s like to have your other child watching and not being able to help you.

You do not know what it’s like. Do not sit on my sofa and do not say that to me. This is in my head.

Out of my mouth. Oh, thank you. You know, it’s the battle for education.

Yeah. It’s the battle for NHS care. It’s the battle for everywhere you go for people to try and support you.

I actually ended up chairing Kieran’s EHCP meetings. I’ve done that before. Yeah, because like the person they sent from education had not a clue.

So I said, right, this is the agenda. This is what we’re going to do. This is how we’re going to do it.

And he has got a really, really good EHCP plan. I don’t know why they think only education should turn up because that was the whole point of merging it and not having the statement anymore. But it has made me into this person who’s constantly arguing with people and fighting for Kieran’s rights because he doesn’t have a voice.

I’ve seen this as a difficult parent. You are that difficult. And in Ealing, I’m getting myself a bit of a reputation because I’m not just a difficult parent for Kieran.

I actively encourage Ealing’s education department to listen to other parents. Well, you know, I’ve got two things going for me. I’m English.

I’m not sorry. I speak English and I’m not intimidated by their authority. And they don’t always know best.

And you also work with children. I know. I work in a school.

I work in a primary school doing one-to-one with children who have a diagnosis. But why did you choose to do that? I know a lot of parents do do that.

I didn’t choose it. I worked for the NHS, but I had to stop working full-time because Kieran needed me at home. And I feel that I lost my identity.

I stopped being me. That’s something else autism took away from me. And I did have a few problems with I’m not me anymore.

And my mother would say, come along. Yes, you are. But actually, I love working in the school.

It sort of chose me. It was an ideal opportunity. It’s term time.

I finish at three. I can get home in time for Kieran. And I have got a special set of skills that I can help out with other children.

So that’s where I’m at. Okay. Tell me some positive stuff about Kieran because obviously you’ve discussed the difficult part.

So tell me all the lovely things that you love about your son. Oh, I love absolutely everything about Kieran. There is not a drop of love.

I could have more of that boy. He’s funny. He sings all the time.

He dances. He doesn’t think I look fat ever. He’s just such a sweet, endearing person.

If we could all live life by Kieran’s rules, it would be such a happier world. He doesn’t judge anybody. He’s always very happy.

He has his challenging behavior, but that does not define him. He says he has his challenging behavior weekly. Or would you know what the triggers were to try and…

It changes. It can be a change in weather. It can be the change in the clocks.

Definitely no school because he absolutely loves school. A change in routine. Last year we had a really difficult time.

That’s because his back teeth were coming through. And I didn’t realize until Daniel said to me, oh, Mum, I think I’ve got a tooth coming through. And I was like, oh, my God, you idiot.

Why didn’t you check Kieran’s mouth? And that’s what it was. It’s a guessing game, isn’t it?

A detective, always the detective. And everybody who works with Kieran absolutely loves him because he’s very endearing and he’s very affectionate. And he still sits on my lap or 13 stone of him.

So tell me about the poetry that you write. When did you start writing poetry? Oh, I’ve written poetry all my life since I was a tiny child.

And I’ve self-published two books. Oh, OK. What are they called?

My Heart to Yours and My Soul to Yours. So if people want to look at them up and might like to buy them? Yeah, I’ve got a poetry page on Facebook as well.

Oh, OK. So what’s that called? Celtic Whispers.

OK, so people looking on Facebook. Celtic Whispers by A Bernadette. Yes, exactly.

And check it out. So you’ve got lots of strings to your voice. Well, exactly.

I’m a great baker, too.

[Speaker 2] (39:54 – 39:54)
Oh, are you?

[Speaker 1] (39:55 – 42:04)
Oh, wow. Yeah, I know. Would you like to read?

You brought another poem. Would you like to read that one? I will read it.

This is another one for Kieran. It’s called Love Me. Love me.

Please just love me. Do not try to fix me or change me or wish I was more or less. I am doing my very best to be my very perfect me.

I am unique, not the same. And I am all I am meant to be. Don’t look for my differences or compare me to another.

Look at all I do with all my heart and soul. I am not broken. I am complete.

This is my whole. Love me as I love you. And do not wish me different.

Let me be enough for you because you are enough for me. Oh, that’s lovely. Thank you for sharing your poems with us and with our listeners.

I just want to remind people that we’ve got our autism expo. It will be happening in March next year at Brunel University. So it’s March the 28th.

So we have speakers. We have stands and we also have clinics. So they’re free clinics where people can get speech and language, advice, occupational advice, legal advice, behavior management advice.

It’s such a lovely venue. It’s £10 for the day and you can spend the whole day there networking, having a coffee, looking at stands, listening to speakers. And it’s such a lovely event.

And we’re still looking for autism. It’s got talent performers for next year. It’s going to be happening in June, our main show.

So please send in your entries. The closing date’s a little bit later this time. It’s January the 31st.

So check out the charity website, which is www.annaKennedyonline.com. Send us in your YouTube links, whether you’re a singer, whether you’re a dancer, whether you’re an artist, whether you’re an actor, whatever it is that you would like to show us your talents. Please, please share it with us.

And two of our mother and father, or even father and son, a rap duo, have shared an anti-bullying song called Spectrum. Give us a break and that’s on our charity website. Welcome to Women’s Radio Station.

[Speaker 2] (42:04 – 42:14)
I’m Sarah Louise Ryan, and welcome to Love Lessons Live on Women’s Radio Station. Hello, and welcome to Future Classic Women Awards with me, Stefania Passamante, on Women’s Radio Station.

[Speaker 1] (42:14 – 46:36)
Hello, and welcome to June May is Listening. Hi, this is Anna Kennedy, and we’re at Women’s Radio Station supporting women’s wellbeing, and we’re talking all things autism. Women, the possibilities are endless.

That’s what makes us different. Hi, I’m Lauren Mishcon. I’m a birth doula and mum of three, and I’m passionate about supporting women to have empowering and positive birth experiences.

Please join me for my brand new show from tummy to mummy here on Women’s Radio Station. Every week, I’ll be here with an expert guest talking about women’s reproductive health, everything fertility, pregnancy, birth and baby related right through to the menopause and beyond. Please join us for an informative and fun hour.

My name is Ingrid Marsh, and I host the radical wellbeing show Supporting Women’s Wellbeing. On my show, I bring you ordinary women like me and you who are sharing their unique stories, women who have refused to be defined by their pains to be silenced by stigma or crushed by stereotypes and who are taking back their power. And together, our mission is a simple one, and that’s to inspire you to kick away the roadblocks too, to don your wings and be the person that you were born to be.

Hi, I’m Hazel Butterfield, a blogger, book lover and mental health advocate, and you can listen to my show Get Booked here at Women’s Radio Station daily at 5am and 5pm. Throughout my shows, we’ll talk about the books I’ve read, new releases, chapter authors, publishers and book enthusiasts, all with a theme and aim of supporting women’s emotional wellbeing. If you have a book to tell us about, get in touch.

At presentersatwomensradiostation.com, join me on my show and share my love of books and writing. No need for previous qualifications. Find out more at nurturingbirth.co.uk. Hello, this is Anna Kennedy. We’re talking all things autism. We’re live in Common Garden, and it’s the last quarter of the program. Time flies.

One of our other winners, one of our youngest winners was the Creative Arts Award, which was Noah Liu. Noah is 12 years old. He was diagnosed with autism at the age of eight.

Noah sees himself as a sensitive and creative person, although he suffers with great anxiety. Noah starts to draw at the age of five when his mum was going through a cancer treatment. He drew big characters holding weapons expressing his feelings of protecting his mum.

In 2017, Noah was invited to design the poster for Festival of Autism Swansea. This is an event to celebrate the achievements of those touched by autism. He has since held his own art exhibition.

I’ve seen his work amazing at various venues. He was commissioned to design the birthday card for the award-winning authentic Chinese cuisine. Ji Ji Kao’s favourite authentic Chinese.

Noah also won the Young Artist Award by Glyn Vivian Art Gallery in 2018. What a lovely family. So thank you, Bernadette.

We’re on the last quarter now. So tell me about this battle that you had with Ealing about respite and care. Well, Ealing Council had one respite facility, Hello House, and they decided that they would close it down because there weren’t enough families in Ealing that needed overnight respite, which was quite interesting because they’d got 800 children in school with statements and only four needed overnight respite.

So that’s quite incredible.

[Speaker 2] (46:36 – 46:36)
I know.

[Speaker 1] (46:37 – 47:16)
I had always been of the opinion that I didn’t need or want overnight respite. And Daniel used to say to me, oh, if I was autistic, would you send me away? And I was like, oh, we’re not sending him away.

So some friends of mine who were fighting the good fight said, look, Kieran’s really, you know, you could do with it. Will you come and fight with us? So I said, I would.

Quite clear, I didn’t want respite, but off I went. And I think the social services came along to discredit me because we quite often fall through the net and don’t often ask for help. Came to the house and thought, oh, dear God above.

This family exists. So we went to the council. The council said, oh, no, we’re going to close Hello House down anyway.

[Speaker 2] (47:16 – 47:17)
I remember this.

[Speaker 1] (47:18 – 48:06)
Yeah. And they tasked us, the parents and a lady from Mencap helping us to go out and find these families, even though they’d got them on their books, even though they were paying for their education. So off we went because, you know, give somebody who’s had no sleep and who’s got a child with special needs another job to do.

And the job got done. So we went back to Ealing Council with this list of families. How many?

Hundreds, hundreds of families. And we were awarded one and a half million pounds to open a new respite center. We are a year behind schedule.

However, it is due to open its doors in April next year. And fair play to Ealing Council. They did involve us in the parents group.

So we have been involved in the decision making.

[Speaker 2] (48:06 – 48:07)
Now it will be run. Oh, that’s good.

[Speaker 1] (48:07 – 48:57)
Oh, I’d love to see that. I will let you know when it’s opening. Perhaps you’ll come along and be a guest for us.

Still very much involved in that. Whereabouts is it? It’s in Northolt.

Downside of all of this, of course, is we ended up having to have respite because I couldn’t be saying where everybody should have respite, but we didn’t want it. And we didn’t want it. And it was really difficult for me to let Kieran go.

And we paced up and down the first night. He’d never been away from us. And he’s like a three-year-old, you know.

Would you send a three-year-old away? Yeah. However, it’s part of what he needs because every teenager needs an outlet.

He needs his space. And we started off with one night a fortnight. We now have two nights a fortnight.

Oh, wow. We live for it. It’s fantastic because it means that we can do things with Dan that we can’t do with Kieran.

We do lots of things with Kieran, but there are some things he can’t tolerate.

[Speaker 2] (48:58 – 48:58)
Yeah, I know.

[Speaker 1] (48:58 – 49:30)
Dan needs that space. It means I get time to do my own things. It means my husband can have time to do his own things.

It is fantastic. And, in fact, recently, because it’s a Hounslow facility we have because England don’t have one. Oh, okay.

Because they shut the house down. Yeah. I think I mentioned that.

And they had an emergency case. We hadn’t had respite for eight weeks. Mm-hmm.

And we really, really missed it. And it’s the fact that you have these plans. And we’re okay because Dan’s nearly 16 and we can say, we’re really sorry, Daniel.

Kieran hasn’t got respite. And he’s okay with it.

[Speaker 2] (49:30 – 49:31)
Yeah.

[Speaker 1] (49:31 – 49:58)
But he sees that age. But I’ve got friends who’ve got younger children and they would have been really looking forward to some mum and dad time. Yeah.

And that’s cancelled. And then they have to manage that disappointment. So, but, you know, I think that’s just a sign of the times.

I think you’re constantly fighting and battling for things that your children really need. And they make you feel like you’re begging for help. It is.

And it’s so demoralising. And also parents already feel guilty because they’re asking for the respite.

[Speaker 2] (49:59 – 49:59)
So guilty.

[Speaker 1] (49:59 – 50:31)
And we’ve never had respite. And Angelo’s 26 and they don’t feel that I need it. And it’s just like I’m up every night with him.

And I remember when we first set up the school as well, because obviously the boys were at home because there wasn’t anywhere for them to go. We were getting six hours respite a week. It started off at three in our battle to get six.

And then they took it away from me because we’d opened a school and they said we didn’t need it. And I thought I need it even more now. They’ve got no idea.

They don’t. They have got no idea. Okay.

So that’s fantastic. So I’m looking forward to. And so how many can it.

[Speaker 2] (50:32 – 50:32)
Six.

[Speaker 1] (50:33 – 52:49)
So there are three downstairs bedrooms which will be able to have wheelchairs and hoists and things. Okay. For children with physical disabilities.

And then there’s three upstairs bedrooms which are more for children with sensory adults. This facility goes. To 25.

No. No. Calm down.

11 to 18. Right. But Ealing do have a facility for 16 to 25.

Okay. And then adult. Because Kieran will have to obviously leave where he is now when he’s 18.

Right. But he’s not ready to go with adults. No.

No. So what advice would you give to a new parent? So we do have quite a few parents that are listening in that have children just been diagnosed, obviously worried, trying to get their head round it, hungry for information.

So if you could go back all those years and then think, right, I would have tried to do this a little bit differently with hindsight. I think the first thing is just love your child. And nobody knows your child like you know your child.

And if your instinct is telling you something, listen to it. Don’t be afraid to ask for help. You have been given this most extraordinary child and you’re about to go from being an ordinary parent to an extraordinary parent.

And it’s a gift. Do seek help. Do ask for help.

If you’re not sure, ask. You know, it’s okay not to have that knowledge. As Anna said earlier, speech and language OT.

How does all of this come into autism and why does it help and support us? Education department. Don’t be worried about special school.

Don’t be in denial. If you’re being told that your child would thrive in a special school, that’s a good thing. It’s a really good thing because it’s difficult for children.

And all the children are so different for each other. Some thrive in mainstream with the right support. Some thrive in a unit that’s attached to a school.

Some thrive in a special educational needs school. It’s the same as adults. We’ve all got different jobs.

We’re all different people. And don’t think there’s a stigma. It’s not a label.

All it is, it’s an ability to enable you to help your child get the right sort of support. And don’t panic. Really don’t panic.

It’s not the end. It’s just a very, very different beginning. And it is okay.

Trust me, Kieran is so autistic. He’s hanging off the spectrum. But it’s okay.

It’s fine.

[Speaker 2] (52:49 – 52:50)
We’re very happy.

[Speaker 1] (52:50 – 59:58)
And always take someone with you who knows the system. Because when I know, I’ve said this before that when you’re talking about other people’s children, it’s easier if you like. But when you’re talking about your own son, the emotions that you have.

Just take somebody with you that knows the system, that can help you. Write things down before you go into any meetings. Log everything.

Use emails as much as you can. Try to not be so verbal if you like. Because you’ve got nothing to back you up.

So always think about if you’re on the witness stand. What evidence have you got? I always email after a meeting.

I say, just to clarify, this is what was discussed. And this is what was agreed. Because then they’ve got the right to reply and say, well, no, you misunderstood me.

But if they don’t reply, then there you go. We are on the witness stand. And they have understood you.

Obviously, you’ve got a busy life. So I always ask, because we’re about supporting women’s wellbeing, what do you do to relax? What do you do to recharge your bathrooms?

I do have a busy life. And what I do is I always make sure I’ve got something in the diary to look forward to. So when it’s a really difficult day, I can think, that’s OK.

This is coming up. I’ve got a great group of friends. And if I can’t go out, they come to me.

If Kieran’s distressed, they let him get on with it. They’re very understanding. Oh, that’s good.

I do write my poetry. I make sure that I keep in touch with people. I’ve got a lot of communication with people so that I don’t lose my identity in all of this.

That I’m not just an autism mum. I’m not just Daniel’s mum. I’m not just Johan’s wife.

So my phone is constantly on charge. So I care enough about myself as I do my phone. So I make sure that I’m recharged as well.

And it might not be having lots and lots of sleep. But I do always have a coffee with me. And I always, always, always, always make sure that if I’m feeling a bit low, I speak to somebody about it.

I don’t deny it. I don’t say, well, I’ve got to be strong. I’ve got to keep going.

Everybody says, oh, look at you. You’re amazing. I’m not that amazing sometimes.

But I do make sure that I share how I’m feeling with people because otherwise, that little seed of doubt or despair can grow. So I’m not going to alter that. I’m just going to make sure that I’ve told my friends and they can make me feel better.

And that works for me. Thank you for sharing that. So I just wanted to finish off because we’re winding up now with a quote by Rosie Weldon who came along to our hero wards and she’s put autism is lonely.

Being autistic is waking up to fight through another day, every day. It’s having a meltdown and picking yourself back up to face the world again. It’s being offered tissues by a stranger as you try to drill through.

The awesome hero wards showed me just how many people are in our corner. Fighting beside us, with us, for us, fighting every day is hard knowing that there are so many people in our corner is overwhelmingly heartwarming. To thank Anna Kennedy Online for everything that they do to be in their corner as they are in ours, I would love to raise some donations for them.

They’re a small charity that depend on donations. Donate to the charity any amount to say thank you to them and to all those who are in our corner, the corner of autistic people and their families. I would love to hit the target of £100.

And to everyone who is fighting for us, with us, beside us, or if you are one of us, I know it’s hard. Let’s support each other and keep going. So nominations will be out very soon for 2020.

So if you want to enter someone, please check out the charity website. Please check out our newsletters to see what we’re up to. And as I say, we’re made up of volunteers.

We’re very passionate. We’re either parents, we’re either carers, we’re either extended families, we’re either autistic adults. What we’re doing is we’re a very tight team and we want to raise awareness, acceptance and create opportunities.

Once again, thank you so much, Bernadette, for coming in and chatting to me about your family life. And again, just to remind everyone, what’s the Facebook page? Autism, a parent’s advocate.

Thank you so much again. And if you want to speak on the radio, please, please contact me via the charity website and we can book you a slot. Bye everyone.

Have a good week. 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. Many women want to be smart with their cash, but just don’t know where to start.

At EmpowerandEnrich.org, you will find a link to our website. 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. 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 and make sure you laugh out loud as we take on this challenging role together. With spoonfuls of advice, incredible stories, it will be refreshing, honest and funny look at being a mum. Helping a baby, trying to get out of an unhappy relationship or just unsure what benefits you may be entitled to. We can help.

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