Tony Mantor: Why Not Me ? - Alize Adelle:The Unshakeable Bond: An Aunt, Her Niece, and Their Autistic Journey

Episode Date: November 22, 2023

Send us a text Welcome to a conversation that will move your spirit and inspire your heart. We are honored to have Alize Adelle, who has been the guiding light for her severely autistic niece, Hannah. Alize enlightens us about Hannah's early diagnosis journey, which was fraught with uncertainties and societal misconceptions. Hannah's remarkable adaptation to her non-verbal interaction, using Disney film catchphrases to express herself, is a testament to the extraordinary resilience embedded in her spirit. As the world grappled with an unexpected pandemic, life presented Alize and Hannah with a unique set of challenges. Alize navigates us through this tumultuous time, describing how she managed to explain the concept of COVID-19 and the subsequent isolation to Hannah. Through it all, Alize managed to establish a sense of balance and structure, turning her home into a sanctuary of calm amidst the storm. The lockdown period, while tough, also offered opportunities for breakthroughs and fostered a symbiotic coexistence between Alize and Hannah. Our exploration of family dynamics establishes the unique bond between Alize and Hannah, a bond that is both tender and unshakeable. Alize's recounting of taking Hannah on a Disney cruise underlines the courage and adaptability that Hannah has nurtured over the years. We also acknowledge the critical role of Alize's sister and friends in building a robust support network. Our conversation ends on a note of hope and advocacy, underscoring the importance of sharing stories that triumph over adversity. We invite you to join us and possibly share your own journey - you never know who it might inspire. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to Why Not Me the World.

Today's guest is Elise Adele. She lives in the UK and she's raising her autistic niece. Welcome to the show, Elise. Thanks for coming on. Thank you. I'm glad to be here. It's a pleasure to have you. It's my understanding that you've been instrumental in my own.

raising your autistic niece? Well, raising is, I would say, an odd verb to you is because she's, let me give my quick maths here. She's 35, be 36 in a couple of weeks time, but she's severely autistic and requires 24-hour care. Okay. At what age was she diagnosed autistic? Oh, now this is a good question. She was born in 1987. Now, I have to remember now my sister. history with her because my sister's no longer here. That's Hannah's mother. Hannah, her name is.

I'm sorry to hear that. What did Hannah's early years look like as she was growing up? When Hannah was born, developmentally, she had some things she excelled quickly and other things sort of dragged. So she was walking,

crawling and walking and climbing, my goodness, she climbed everywhere. She was very hyperactive. She's very advanced physically. She was also mentally quite advanced because from a young age, you know, she wasn't speech, she didn't have any speech. She would drag objects and items to her mother

to help, you know, for example, a bottle of soda. She'd drag a bottle of soda over to her mother so the mother would open and give her a cup of soda, not like the thing. But we noticed, obviously, that her speech was not developing at all. So there's a couple of things that I'm wondering here. She's 35 now, so when she was three years old, autism wasn't really thought of that much. So if she wasn't having any really good results with her speech,

how did your sister approach that? Well, there were a lot of things going on at the time. One of the popular theories was, along with an awareness beginning with diagnosis of autism, 87, we're looking around the year that the Chernobyl disaster happened. I remember that being forefront in my sister's mind with all the worry and the news about radioactivity in the air. So she thought her and a group of other mothers who were expecting and giving birth at the same time. Quite a few of them had children with learning difficulties.

And of course there was also another scare at the time about the new MMO vaccine and whether there was a link with that. That's a lot of things to be thinking about, especially when you're trying to get a young child diagnosed. Hannah's path to diagnosis was very slow. We also noticed that she was sound sensitive. She didn't like the toilet being flushed. She didn't like hair dryers. She didn't like the washing machine on Spain, etc. She went to a clinic in London to have treatment for sensitive hearing.

But I think I can't be accurate, but I think it took from the moment her speech didn't develop to about, I would say on average, about five, six years of age before she was. she actually got a diagnosis of autism. When you got that diagnosis, that must have been, that's early on, probably somewhere as late 80s, early 90s? Born 87, so I'd say early 20s, yeah, 92-ish. So in 92, autism wasn't really recognized all that much yet. How do they handle it? Did they set her up for any type of therapy?

There wasn't really a great deal help for my sister Janet, which is Hannah Smith. I think she was briefly offered what they call the British signing for the deaf. Okay. Which is like a standard, you know, universal course to go on for the country to learn how to do signing to communicate. Hannah's problem wasn't deafness, it was understanding words being said to her. Right. So that wasn't particularly successful. because Hannah wasn't learning

what the sign language meant herself, you know. Right. But she did end up going to a nearby primary school, which had what we would call a cabin. I'm trying to think what you'd call it. It's like a portable building that they drop into a yard. And it was a unit where all young children with special needs mixture.

Okay. And I don't think there was more than 10 children in the area that were attending. So she had primary school, education there for her abilities. Secondary was the same, another sort of same sort of style cabin on the secondary school grounds

where she had, you know, a group, again, of varied special needs people. And what would have been in our university college years between 18 and 21, residential then on the outskirts of Cardiff in South Wales. That was excellent. That was absolutely fantastic. She loved her finding that.

That's really great to hear that she found the good spot that she liked. So how has she grown now? Has she got to the point of more verbal or does she still have some issues dealing with it? Very limited. She's written down medically as non-verbal because she doesn't grasp conversations. Okay. She's very clever. That's good. Because she adapts what she has is a series of catchphrases. She's learned these couch phrases mostly from Disney films and cartoons and such like, and she uses them appropriately. That's really good. Early on, they had a therapy where they show pictures to the kids to have them relate to what they wanted. Does she have to use that at all? She doesn't need it. She does it herself. Very recently, she's drawn a picture of something she wants for a birthday.

add an eye watering, well for me, an eye watering 75 pounds, which is, I'm sorry, dollars, $80, 90. Right, right. But she draws, she draws what she wants. She uses a tablet where she gets onto the internet

and picks out images. She types what she wants. She can find the image of what she wants and she shows me. Okay. So she's very adaptable. I have a certain, instinct as well for things like when she's hungry. I try and get her to ask, but some things she

doesn't register, but she is hungry, you know, if she left her own devices, she'd go without food even if it's prepared and ready for her. Wow. Now, some autistic people have issues with texture of their food. Is that an issue with her? I think so. She's obviously, again, nonverbal in being able to describe that. Right, right. But she loves to tomato ketchup. Okay. But hates tomatoes. She will spit them out.

Okay. Not being on onions, that could be a strong flavor for texture as well. My grandfather, her father and her grandfather, hated onions for the texture as well as the taste. Strong cheeses. Again, that could be more flavor than texture. She can't really say about texture, you know, but I guess it's in the mix. It sure is. Everyone's different.

So how's her temperament? It's known that autistic people can have major meltdowns and some can have just meltdowns. How is her temperament overall? I'm very lucky. She's very good, very happy most of the time. Lockdown was challenging. It sure was for all of us. We had a terrible set of circumstances in October 2019.

My sister fell ill and I took it to emergency after trying to get a lot. sense from our local doctors and she was eventually diagnosed with cancer and would have to receive treatment. Oh, wow. That's just so sad to hear. They had said it was terminal, but they were going to go ahead and give chemotherapy a goal to extend her life. But she was very, very sick at the time. She didn't have to ask, but she asked me if I would take care of Hannah with it possibly being permanent. And I said absolutely in a heartbeat. Well, that is just tremendously amazing. What a great thing for you to do. But then in the UK, our lockdown came in March 2020. My niece, I always think of her as a girl, even though she's 35 because she's got that personality.

So this poor girl was faced now with her mother in isolation so we couldn't see her. Well, I can't imagine that. And her mother was quite sick as well. So, she wasn't up for phone calls. So she had no way of seeing or contacting her mother. That is just so sad. She had left her family home to come and live with me. So a lot of her belongings at that moment until we were able to meet up as a family

and organise a move. Again, we were in lockdown. Nobody could, you know, go back and forward easily. Right. She couldn't go out for shopping, walks, cinema. And she went into huge meltdown because the biggest, most challenging behavior I've ever ever experienced drama because she's generally so placid.

That's just so sad to hear. These were extraordinary times and we'd never seen anything like this. It must have been really challenging for you, but challenging for her as well because she couldn't see her mother. Now, she self-harmes in her temper. I've heard that a lot, unfortunately. She did at one point almost go to shake me on lockdown, which is the first time she's ever laid hands on anybody.

but she thought about it and stopped. So she's very, very caring about your space, but she will scream very high and very piercing, very loud in your face when she's having meltdowns. But to be fair, she's come through all of that. She accepted her mother passing away superbly. I could not believe it. Wow.

Obviously she was sad and grieved, but I think a lot of her grieving was at the beginning of lockdown. Well, that is just a lot to take in for a young girl. It's just amazing that she did so well considering everything that was going on in everyone's life. Exactly. And we were trying to explain to her that mummy's sick. We kept it simple, mummy's sick. Sounds like the best way for sure. Eventually, I think I had a breakthrough with her understanding lockdown. She can read a little bit and she loves London. She knows what London is. I showed her Piccadilly Circus with pictures saying, from our National Health Service, our healthcare,

they put banners up saying, stay at home during COVID. That must have been pretty tough on you to try and explain what was going on around the world because that was tough for everyone. I couldn't explain to her what COVID was. I couldn't explain to her. It was a germ or disease.

She couldn't get it. That's totally understandable. So I showed her very simply, these banners saying, stay safe, stay at home. I showed her the red double-decker buses, which are from London as well, you know, synonymous things of understanding, and they had the same banners on. Okay.

I showed her Boris Johnson and told her he's the boss, and he says stay at home as well. Did that help her understand it at all? Something clicked, and I could, she just went, okay, okay. And I could sort of almost get that moment of connection with her, and I thought, she doesn't know why, but she knows it's not my decision to say at home. I'm not the wicked witcher. Because I think a lot of it, she thought that I had suddenly taken over and stopped her from seeing a mum and taken her from her home. Yeah, I mean, that's a tough situation for someone that's not autistic, let alone someone that's going through what Hannah goes through.

Yeah, I'm trying to understand where her mind was if I was in her shoe. That speaks very highly of how you're handling the situation. You have to think of your situation too and your health. I've got to be honest, this is where I said at the top of our conversation. about Max from Showboy. She was amazing. She poured in every day to make sure I didn't go insane.

It's always great to have someone in your corner for support. Apart from the physicality, I felt like a battered wife. I'm going to explain this because she would follow me around the house with this meltdown, self-harming and screaming and shouting and occasionally slamming doors to the point where objects were getting thrown off the walls and breaking. And again, this is not as severe as what many experienced. against, you know, over lockdown. Right.

We're the same people with Hannah's condition, you know. Right, right. But I couldn't get away from her. Well, that's a tough situation to be in for both of you. We were on lockdown. We were only allowed 15 minutes exercise outside of the house. That's just so tough because that's when the walls in the house seemed to just close in on you. Yeah, she'd follow me around the house everywhere.

She'd stop me from sleeping, you know, I was trying to get you to sleep. Whenever her mother's bad habits, she used to leave Hannah sleep when Hannah felt like, and sometimes she would stay up to 3, 4 a.m. in the morning playing games. So I was trying to break this cycle, you know, which was another added problem. But thankfully now she's in her normal routine. Well, that's the key, just getting someone to get used to a certain pattern, then hopefully they'll adjust to it. But at the time, that was another bone of contention.

I would have lights out, games off, TV off, went to wind down. And I would give her time countdowns, you know, to tell her 10 minutes and then switch off. So how did she handle the new structure in her life? And she was terrible. She'd come in and rip the quilt off me and turn the lights on and generally have a meltdown because I was going to sleep. So I was getting sleep to cry and being screamed at all day.

That's a very tough situation to handle. Actually, when you scream so close into the face within inches and as loud as she does. So how did you find a way to cope? At one point, I slapped her so hard across the tum. top of her arm. She actually stopped and burst into tears and I felt so witty. But it was a reflex reaction. I didn't expect it, you know, and it was a reflex reaction. So I was feeling I was failing and, you know, God helped me, prayed, you know, for something to happen for us to somehow

find some sort of symbiotic coexistence in the same house. That's just such a tough situation. So what happened from there? And at one point, I actually locked myself in the bedroom just to get away from her. I guess the next question is, did it work? Well, this is, this in hindsight is actually hilarious. Okay.

Because, and I mean it's affectionately, the little cow started battering the door, and not just kicking the door, but kicking the wall in the hallway, which is just a weak partition wall, and slamming and slapping the door and yelling, let me in, let me in, let me in, let me in.

And all she wanted to do was to scream at me. There was nothing she wanted. I locked myself in and I wouldn't let her in. I was shouted to go away all the time at her. Okay. And she got out of the back door. The back area was secure so she could come and go in the garden as she pleased, you know.

Okay. She could have the back door and started banging the wind window and she was outside banging the bedroom window shouting at me, let me in, let me in, let me in. I had to because I thought, oh my God, we've got neighbours here. They're going to phone the police thinking I've shut her out of the house. Well, actually, I'm locked in the bedroom. Oh, that's a tough situation. And I got like a social worker because of our unique situation.

I thought, my gosh, social service is going to be here. They're going to take her away and I'm going to be in trouble. and thought, oh, this is something about her. She's a beautiful spirit, absolutely beautiful. But there's a Machiavellian manipulative streak in her, you know. Well, we all have that at times. She knows how to work you and how to get her own way. So how did that end up?

Once you brought her in, did that help settle things down for both of you? Well, no, that was just one memorable moment to describe what it was like on lockdown. Spreading little help from the GP. I found the GP to find out what could be done. I don't know what the American name for the band, but the British name is Diazepam,

which is in the family of relaxers. He didn't want her to get hooked on them, but he said in an emergency, you could give her a dose of up to two tablets, you know, to see if that will calm her down. I jolt that I'd be back for more because they'd be handy for me if they don't work on her. Well, a little levity's always good in life.

To be fair, as I said, once I had that breakthrough, I was telling you about getting her to understand there was a reason we were staying home because outside at the moment was dangerous. Right. She did seem to switch and cope better. Oh, okay, good. And as time progressed and she realized, mummy's very sick. One thing that's fabulous about Disney, thank God, because she is a huge Disney fan.

As most are. Disney are very good at getting children in early understanding about death in their cartoons. So, you know, she understands things like Bambi's mother dying and in the Lion King when Mustafa dies. And he understands the concept of death. So I'm sure she knew her mother was going to die before we had to tell her. And I think that was part of the problem as well, you know. Yeah, I get that. And it is just so tough to lose a mother at any age.

Did she get to see her at all, Zoom or a phone call or anything that would give her a connection? No, no. Just before lockdown, my sister had been going through half of her chemotherapy. Right. And she was very sick and weak. She had lost all her hair. Yeah. And we went to see her in this, for want to the better word, hospice.

Right. We were looking after her. I could never have looked after both of them at the same time. Oh, yeah, that had been tough. Because also, Janet required transport back abroad to hospital to receive treatment for our care and bathing and all the rest, you know? Sure. So Hannah saw her mother just before lockdown.

And that's saying, you know, one picture paints a thousand words. She could see her mum was very ill. And I'd lost a lot of weight and the hair loss. she actually went forward and lifted her mum's cap to see there was any hair underneath. And Janice sort of looked at me and said, I don't know if she should see me anymore like this. It might upset her.

I said, I don't know what's for the best. I said because the advice I said from the social workers is that, you know, Hannah does have a great deal of more understanding, if not in language, she can see things and has a certain amount of her. well, and she's incredibly intelligent in many ways, you know. Well, that is just such an incredibly hard situation to be in. The decision was left out of our hands in the end because lockdown occurred. It was summertime when we were allowed to meet people outside months later.

We weren't supposed to meet my sister inside, but she was sick. She was just sick to be reeled outside. and I won't name the hospice, but on compassionate reasons, they decided to turn a blind eye, and they allowed one family member next of kin to come into the room, fully masked, PPE, scrub and gloved, to go in and spend some time with our sister because they knew that her death was close by.

She refused further chemo after lockdown. She only had half her chemo. She wanted to go, basically. she was in a lot of not pain, but she was just tired and we've given up, you know. Yeah, I had a friend of mine that was in the same situation. It's a very tough

grueling process. And the treatment is grueling on top of it as well, you know. She just didn't have any in her. Yeah, and that part is just so tough. I saw her personally. I couldn't bring Hannah. That would have broken their agreement. But to be honest, she was in

such a sadger state. I think it would have being cruel for Hannah to see her at that point. Yeah, and that's a tough decision, but you have to do what's best for her. Did you get a chance to see her one last time? Well, actually, I did see her the day before she passed away. She passed away August 30th, 2020. Well, even though that's sad, you can take comfort knowing you did the right thing for her and her daughter, and she is in a better place now. Well, do you want to know what a horrible twist of irony is? Okay. I was sick last year. Hannah and I got a very great stable relationship. She has a room with all her needs,

and it's fully decorated in the theme of Disney Frozen, and we were going along, getting along famously. And last year, I got sick in the June, and at the end of September, I was diagnosed with bowel cancer. I was rushed into hospital because my digestive tract was blocked by this tumour in the bowel. I had to have an emergency.

emergency colostomy. I've been through five weeks of radiotherapy every day, Monday, a Friday for five weeks. I had three months of chemotherapy. Sadly, I've had the news that the cancer has spread to my lungs now. I've got about 12 months. Wow. I just don't know what to say. That is just such awful news. I'm so sorry to hear this, both for you and for Hannah. Now it's happening to her again, and that that makes me most mostly angry. I completely understand that for sure. I started to get to that place

where I really felt I was doing a great job of looking after her and coping myself. And her room was beautifully decorated. So this is the very first time she's had a bedroom of her own, decorated the way she wants it because she's asleep in with mummy

and mummy's room all the time. So she has her own bedroom now and she can get all her belongings easily. They're not sort of mixed up and lost. And all her clothes are in the wardrobe and in the cupers rather than on the floor and in the tumbled dry. Well, I'm just so glad that she's adjusting. She's loving this new bedroom and it just upsets me.

I don't blame you at all for being upset. I don't know how I would react with what you have to deal with now. I know I can't help it, but I'm so cross with cancer because I had promised my sister that I was going to take care of her the best I can. Well, there's no doubt in my mind that you've done everything possible to make a good life for her.

Yeah, I just wish I had longer than 12 months. Yeah, me too. But you never know. They're always coming up with something new, so maybe they'll come up with something that might be able to help you and extend your life a little. I don't know.

I don't think so. I mean, they haven't offered me any alternative therapies because what they offered me is chemo and the effects of chemo. It's incredibly, incredibly grueling. And this next round of chemo they offered me was going to be even more intensive. Oh, that's, I hate to hear that. That's just so sad.

My philosophy was that if I could gain an extra few months at the end of my life, it's taken me three months to recover from the last chemo. And obviously during chemo, I was also very sick. Right. and I didn't, on the advice specifically, I didn't allow anybody to come near me without a mask on. That makes total sense. Because I had spent five weeks in hospital with various infections

because my immune system was mess. How is Hannah handling what you went through? Because where she's living with you now, she has to see what's going on and where you said she's very intelligent. She's probably realizing something's not right. Oh, absolutely. She was, as I say, she's got a very beautiful soul.

She's very, very caring. And she was tremendous. She was wonderful if I asked her to go and get me some water. She'd get me water. She kept her volume because she's quite loud. She likes to sing along to music. And shout and dance and, you know, she's happy. Always noisy.

Well, I think it's great that she's doing what she's doing to help you, especially with all the challenges that's in both of your lives right now. I'll tell you what's been the biggest challenge of all for me, obviously apart from the challenging behaviour that she had. What wasn't challenging was the fact that she's my niece and I've often taken her out on my own for a few hours every week to give my sister a break. So I was very familiar in general on how to care for her

and communicate with her on a big, big level. My most challenging aspect of all of this is becoming a new parent. never had children of my own. And suddenly I was a parent on lockdown. Well, it seems like you've done a fantastic job. Well, it's been beneficial in many ways. And what's been interesting is that I've been able to bond with friends my age who have had children and unruly teenagers.

You know, in many, many ways I would class on that as a teenager, a young teenager sometimes. Although she does have a massive crush on Will Smith. I haven't told her that he's in the back. bad books at the moment. Yeah. Okay. I don't want to burst her bubble.

So, yeah, she can be very much like a very stroppy teenager. It does sound like you've had some good times, though. I've had some fun conversations with other moms that I never had before, who have been friends for years, but I'm learning more aspects of my friends as well. Well, even though you've been thrown a curve, it does seem like things are working out. The way I see it, I always wondered why I never have. chance to have children of my own. And I accepted it like many women do,

as it's just, you know, one of those things. And I really did feel that God had set me up for that moment to take over, you know, and cancer is a wicked thing. Maybe this is God's plan. Maybe, you know, it is time for Hannah to be more independent and live in a house with other adults as special needs

and have a new life. And maybe that's for it. and this is my time to come. Home. Well, I have to say what a good person you are to think the way that you think and handle it the way that you are.

Hannah is a very lucky person to have you in her life. I think you told me that her mother wanted her to go on a Disney cruise. One of the things the mom said was to make sure she goes on holiday on the Disney cruise ships. After I had come out of treatment

and started, to heal from the treatment. Her brother said, right, everything has stopped us from going, including lockdown and your illness. We're booking it. We're going. Or you'll miss your chance, you know. Travel insurance was horrendous to find and costly when we did find it.

But we managed to go on a cruise a couple of weeks ago. So with this being something that she's never done before, how did she handle it? She was outstanding. She cooked with queuing. I was obviously to go on to the ship and queue when you come off. Excellent with crowds, small spaces and lots of people.

She was wonderful. She was wonderful about food. She wasn't adventurous, but she did try a little bit of everything. No, she did not. She had two tiny blips, as we call them. One was rescued with a generous other auntie, my sister. We went to the rescue and bought her a new cup because her old cup broke.

And there was a moment at the table and I just said to her, look, you know, you have a choice. You either eat nicely in the restaurant or we eat in the cabin. And here she comes. Come and say hello. Say hello to Tony. Hello, Tony. Hello. And that's about it.

She's done a job. She said hello and now she's gone. Yes, she did her job and I think it was awesome. I also think it's awesome what you've been doing for Hannah, giving your circumstances, I think, that you've gone above and beyond and it shows what type of person you are. And that's a truly great person. With that said, I have to say this has been a tremendous conversation, one that I will remember for a long time. I really appreciate you taking your time coming on to my show today. No, it's been lovely chatting. Thank you for spending your time listening to me. It has been my pleasure. taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you.

If you know anyone that would like to tell us their story, send them to tonymentor.com, contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not? me, the world, the conversations we're having and the inspiration our guests give to everyone, everywhere that you are not alone in this world.