Automated Transcript Episode 20
Episode 20: Never Give Up
Speaker Dr Olivia Kessel and her daughter Alexandra
Please excuse any errors as this transcript has been automatically generated
Dr. Olivia Kessel:
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, Dr. Olivia Kessel. And more importantly, I'm mother to my wonderfully neurodivergent daughter Alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade.
Dr. Olivia Kessel:
It is the 20th episode of the Send Parenting Podcast, and we have had almost 1600 downloads, which is amazing considering the podcast has only been in existence for about three months. So thank you. Listeners, we have covered many topics in the world of neurodiversity and parenting. In that time, I thought it would be worth calling out today what is included in the term neurodiversity? Well, really neurodiversity refers to the different ways the brain can work and interpret information. A hint, it's just basically anything that isn't considered a neurotypical brain is neurodivergent. So it's quite a wide grouping and it includes everything from autism to ADHD, to cerebral palsy, to dyslexia, dyscalculia, dyspraxia, Tourettes, OCD, epilepsy, down syndrome, and giftedness and that is not an exhaustive list. This podcast celebrates all types of neurodiversities and is really focused on supporting parents on their journey with their amazingly differently wired kids.
Dr. Olivia Kessel:
In the episode today, I wanted to share with you a bit of my story and the journey that I'm on with Alexandra. I would like to share with you the story behind the music in the podcast, you know, the music that you sound in the beginning and in the end, my daughter has always wanted to be a singer and a songwriter. She doesn't get this from me, she gets it from her grandfather who's very musical, and he actually composes classical music. So she wrote, or rather I should say, she dictated on her computer a song about never giving up. And she had a little bit of help from me and a little bit of help from her granddad. And because he's musically minded, he said, listen, why don't I put this to music? And we can make a real song out of it. So they spent months really working on the lyrics and what they wanted to say and then putting it to music.
Dr. Olivia Kessel:
And the song really, it, you know, it was inspired by my daughter and she wanted to share how it's important never to give up. And a lot of things in her life have been difficult to achieve. Um, and it, you know, she talks about in the song how it's difficult for her to run, how it was difficult for her to, to write or draw like other kids, and how, um, you know, she just realized that she just can't give up of it or riding a bike. And, you know, she said she gets such inspiration from other people who have challenges. And, um, at the time that they were writing this strictly come dancing had rose, uh, the dancer who couldn't actually hear music but could dance incredibly, and ended up winning the competition. And my daughter was so inspired by her and she is so inspired by other people who are now being shown on TV to really, you know, never give up and to realize their dreams.
Dr. Olivia Kessel:
And, um, it's, it's a lovely song and I'm really privileged to be able to use it in my podcast. And if anyone wants to see, she's made a, they made a video too. We made it actually on holiday together. It's, it's nothing, um, it's nothing high tech or, or snazzy, but I will put the video of her singing, uh, never give up to, uh, the music that my dad composed for her. And, you know, today I really wanted the podcast to be about sharing with you all the amazing things that Alexandra's achieved, that perhaps as a mom I didn't think she would achieve. You know, I, I wondered if she would ever learn how to walk. I wondered if she would have to have a walker, um, that was a distinct possibility or if she'd have to, you know, I didn't think wheelchair, I thought Walker because of her balance and, and her ability to walk.
Dr. Olivia Kessel:
But you know, when she was little, two years old, I would keep holding her hand and she kept like prying my fingers off and trying to do it herself and falling down and picking herself up and kept on doing it until eventually she got it. Um, same with running. She doesn't have a a, a wonderful run, but I remember at her sports day and, you know, they, they have those races and when she runs she's like a little teapot because her arm has to bend so that she kind of balances. And she was, she was last in that race and she was smiling, she was looking at everyone in the crowd. She was waving at them like they were her adoring fans. And she didn't care that she was last in that race. She was enjoying it. And I, I wasn't the only parent watching that who had tears in their eyes to see her joy.
Dr. Olivia Kessel:
Um, and, you know, it's, it's her attitude and, you know, so that was really what I was going to talk about today in terms of never giving up and give you maybe some more examples and how you can do it as a parent. But I'm going to go off piste a bit of what I had planned on saying because it has really been a tough couple of weeks since going back from Easter holidays back to school again. It's been really, really tough. And it's come to a massive head last night in terms of me parenting Alexandra and this morning in terms of wondering how can I deal with this child who is getting so upset over the littlest things and having absolutely horrific tantrums. And she's 11 years old where she is crying and she's upset, and she is beyond herself. She's in complete fight or flight.
Dr. Olivia Kessel:
She is angry, she is frustrated, and she doesn't know how to get back from there. And I don't know, you know, I have not known what to do as her mother either. You know, I can't not let her brush her teeth. I can't not let her eat breakfast. I mean, anything has been triggering these huge emotional outbursts. It took her, you know, she's always struggled going to sleep. And it's, it took hours last night to get her to go into bed. And this morning again, it started, and I have, I've reached the end of my rope. You know, I have been reading books <laugh>, I have been implementing plans, I have read, you know, don't be a reactive parent. What is the whole brainchild? You know, yesterday I sat with her and we did, you know, a plan to pause, what do we do when we feel angry?
Dr. Olivia Kessel:
None of it seems to be working. And you know, it was really fortuitous that today's podcast and what I'd planned to say about never giving up really from my daughter's perspective, because it made me stop and think and the, it's just not just about my daughter not giving up in all of the things that are challenging for her to do in life. It's also about me as her mother not giving up on her or me. Um, in terms of the struggles we're going through now, I have to find a way to help her. I have to not give up. And I think it's super hard sometimes as parents and it's super hard to sometimes go on, I'm a single parent, so I don't have another adult in my household, which could be a positive things in some regards, but when I need to release that pressure, I don't know, you know, I don't have someone that I can release it with in my house.
Dr. Olivia Kessel:
So I ended up calling my father who's 81 years old, and he lives most of the time in Germany. And I broke down to him in tears knowing full well that his view on child raising is that there should be consequences for behaviour. There should be punishment. He's very old school. That's how I was raised. But you know, he really surprised me. He listened to me and he said, you know, I don't have the answers. I wasn't a particularly great parent. He goes, and your mom's not around anymore. And he goes, you know, he let me talk. And as I was talking to him and I was explaining to him that it's, it's not her being naughty, it's not her trying to rebel against me, it's that she just isn't able, she's struggling really to process her emotions and she just is like a pressure cooker ready to explode.
Dr. Olivia Kessel:
And as I was talking to him and releasing my own pressure cooker, I had a real light bulb moment. And I thought back to, you know, when we were doing the EHCP last summer and the ed psych report that was done, and Dr. Gemma Levy's who has been on the show and it's a great, um, episode if you go and look and, and listen to her. She's wonderful, wonderful educational psychologist. And I remembered, you know, there was a query there about ADHD attention deficit hyperactivity disorder. And my memory's not great, but I did remember that. But, and I was thinking, you know, now that I've released my pressure gage, I'm going to go back and read that ed psych report because maybe there's something within that that is causing this dysregulation of Alexandra's emotion and the tantrums that she's having, which are explosive.
Dr. Olivia Kessel:
I mean, she's physically lashing out, she's verbally lashing out. She is in huge stress. So I went and read it and it was <laugh> it, it was like exactly describing what was going on in my house and which has been, you know, causing these explosions. Dr. Levy said, Alexandra really struggles with the range of regulation skills relating to executive function. So that's how we manage and monitor our emotions really to regulate our behavior. So I've been asking her to regulate her behavior and her emotions have been going outtaout of control. So wow, could she have in the report it said, these difficulties with executive function can be caused by ADHD. Now, I've always suspected my father has had ADHD. Um, and that light bulb moment talking to him has really given me some insight into what might be going on with my daughter and the struggles that she's having.
Dr. Olivia Kessel:
You know, if she is having a challenge with being able to monitor her emotions, and if this is really something that she has, you know, just like it's difficult for her to use her left side, it's difficult for her to manage her emotions. It kind of changes the conversation in my head where she's not doing what I ask her to do. She's not brushing her teeth. Anything that I, you know, happens in the house is an explosion. And you know, she's, you almost feel like she's doing it at you or she's trying to be disrespectful. And maybe that's due to my upbringing as well. But having this insight that the report has given me is giving me a level of empathy and understanding of her situation instead of the anger and frustration that I have been feeling. So for me, I'm a real action oriented person.
Dr. Olivia Kessel:
Um, when she first got diagnosed, you know, I said to the neurologist, I said, you know, I think that if there's a problem, I will throw enough, enough crap on the wall until I find a solution. But I had felt this morning, I didn't know what else to throw on the wall, and now I have a little light at the end of the tunnel in terms of, okay, we can work with this. There are, there's another step I can take that I can do to help her and frankly help myself because I don't want to live in what literally feels like a war zone with grenades exploding every few minutes. So my plan is, and actually I've already done it, is to reach back out to Dr. Gemma and say to her, listen, I I need your help. Please read back over Alexandria's report on these pages.
Dr. Olivia Kessel:
What can I do? What can I do to help my daughter to learn how to better emotionally regulate so that her behaviour can improve and that she and I can both live in a calmer environment? And then I also, you know, I know quite a bit about ADHD but I need to learn more about it. And one of the things that I really want to learn about is, okay, she's 11 going on 12 now, so her hormones are starting to kick around. Does that have an impact on ADHD? And I don't have the answer to that, but I'm going to look for a specialist and I can guarantee you there's going to be a podcast with an ADHD specialist coming our way and looking at also how hormones potentially affect ADHD. And I know for myself, hormones affect everything. I'm at the, uh, opposite end of the spectrum nearing menopause.
Dr. Olivia Kessel:
And, and hormones do play a role in our emotional regulations. So these are things now that I can take forward with to learn about and to hopefully help my daughter and myself. So I want to thank you today for allowing me to share this very personal struggle with you because I know I'm not alone in reaching a brick wall that seems insurmountable really, as we parent our differently wired children, my daughter's song never give up, has given me the boost I needed to stop <laugh>, release the pressure and start again with my brain engaged to understand what really is behind the behaviour that's upsetting us both to tears. I have by no means solved this issue, but I now know my next step. And sometimes that's all you need to do is know what your next step is. It, it feels doable. I can do one step and I also have gained understanding and empathy.
Dr. Olivia Kessel:
So hopefully when Alexandra comes back this afternoon and she's exploding, I can keep myself calm because I realize, you know, for me to be able to help her with her emotional regulation, I need to kind of be a superhuman <laugh> of emotional regulation. And considering she wakes me up one or two times a night on a good night, um, my emotional regulation can also be a bit frayed and also due to my hormones during this period of time in my life, for me, I need to think of a way that I can let that pressure valve off. And for me, that's running. Um, I get a great release by running when I'm really stressed. So I've been neglecting it because there's so many other things going on that self-care is usually the last thing on the list of any moms out there or dads for that matter.
Dr. Olivia Kessel:
So I am going to make time to get back on the treadmill or even maybe take the time to go and run outside so that I can be that calm force in our house and that I can be that superhuman <laugh> in terms of calmness in face of the mouth, storm of aggression and emotion from my daughter. So thank you for listening. I hope that by sharing honestly the struggles that I go through still on a daily basis, that I've helped you in your struggles and for you to realize that you're not alone. On a more positive note, I would like to share with you a clip I recorded with Alexandria, why she wanted to create the song called Never Give Up. So Alexandra, it is really lovely to have you finally on the Send Parenting podcast because you know you are the reason that inspired me to create this podcast. And the music that you and opi created is now at the beginning and end of my podcast because you are the inspiration of my podcast. So I thought it would be really neat for the listeners to hear about what made you want to first of all write a song and then what made you wanna write about a song about never giving up?
Alexandra Kessel:
So I wanted to be a songwriter and I wanted to be a singer, and I just wanted to tell all the people out there that if you have a disability that doesn't stop you,
Dr. Olivia Kessel:
That is a really good message to give people because having a disability doesn't stop you. And having, you've have, uh, you have Cerebral Palsy, which is a neurodiversity as well, and you have dyslexia and we're wondering if you have ADHD, um, your mommy has, uh, dyslexia as well as does your Opi. So we're a really a neurodiverse family and I think it would be super good to understand what kind of things have been really challenging for you that you've had to overcome.
Alexandra Kessel:
So yeah, um, what has, a few months ago I, um, I was practicing riding a bike and it was really difficult for me. Um, so we went to a place called
Dr. Olivia Kessel:
In Oxford. Yeah, I remember. And and we went there twice, didn't we?
Alexandra Kessel:
Yeah, we went there twice. And at the, what they did is they took off, um, the pedals and then you would just push on the bike and then they, after time they would put one pedal on and then practice with that, and then they would put another pedal on, um, they would put another pedal on and that, and then you would try to, um, well practice of that. And um, when I had it too, my left leg couldn't, um, really like push really hard and I, um, found it very difficult. So they, they told us to take home a turbo, which is a, a thing, um, where your bike is stationary and then you just practice pushing on those things. And you and me would, um, you would go bike it, you would go running and then, and then I would try on my stationary bike to try to see another one. When I came back, I was much better. I was trying to, because my mom and some other people there was, was trying to hold my back because I found it really difficult to like hold, hold my bike. Um, but then I let, I let go and it was all fine and I didn't, oh, and it's like my song now, they given up.
Dr. Olivia Kessel:
Yeah it wasn't actually a few months, it was actually a few years actually that it took us. Yeah. And you know, I remember some times where you were crying and it was, and it was hard. We had to take a break and you had some something to eat and, you know, it was tiring. But yeah, I think that's a great example. Thank you for sharing it with us. That's, uh, it's, you know, it's, it's not just for kids who have cerebral palsy and um, other NeuroD diversities also struggle. And I know that in that course there were kids with autism. There were, uh, some people actually even from your school and kids with dyspraxia. And it was a really good way to learn how to cycle. Now I have a final question for you, and I think you've been absolutely fantastic in terms of sharing with us on this podcast, but if you were talking to a child who, um, maybe is a friend at school or someone that you know who's struggling, and it could be anything, it could be struggling reading, it could be struggling making friends, it could be struggling riding a bike, something that's really difficult and doesn't seem like it's really difficult for other people, but it's particularly difficult for you.
Dr. Olivia Kessel:
What advice would you give them? What tips? If you could give me one or two tips,
Alexandra Kessel:
I would, I would give them to never, um, give up and try and try again. And just if they had reading problems, then just to sound out maybe the word a couple of times were they get to know the words and the things.
Dr. Olivia Kessel:
Excellent. Yeah, those are, those are good practical advices to keep trying even if you get really super frustrated sometimes and you have to calm yourself down, huh?
Alexandra Kessel:
Yeah.
Dr. Olivia Kessel:
Do you never get frustrated, do you?
Alexandra Kessel:
Hmm. Sometimes I do, sometimes I don't
Dr. Olivia Kessel:
What do you do when you get, what do you do when you get frustrated?
Alexandra Kessel:
Um, well I sit sometimes in my swing and I go in the trampoline and I pet my dog Lily and yeah.
Dr. Olivia Kessel:
Yeah, those are really good ways to, to, to calm ourself down because never giving up is sometimes really hard, isn't it? Well, Alexandra, thank you for sharing with us and being on the show. And to listeners out there, we are going to have Alexandra's video of you singing Never Give up on my website for people to watch if they want to. And, um, yeah, it's, it's, it's a song that you could sing at home when you could think about what things are challenging for you and how you keep trying and never giving up. So thank you Alexandra.
Alexandra Kessel:
Okay, bye.
Dr. Olivia Kessel:
I hope you enjoyed hearing a little bit, um, from my daughter Alexandra. She, uh, struggles a bit with, with, with, with verbalizing, but I hope you got what she was trying to say there in terms of why she never gives up. My top three takeaway tips for this episode are really simple. First of all, never give up. You have the strength in you to keep going. Secondly, find the support you need to help you decompress and to find the solutions and answers that you need to help you with some of the challenging behaviours that we have with our children. And third but not least is be kind to yourself. If you think about when you're, you know, about to take off in an airplane and the steward or stewardess is at the front of the plane saying, you know, before we take off, if we, if we run into any problems and the oxygen masks drop, you need to put your oxygen mask on first before you put the oxygen mask on your child. I think the same applies to parenting. You need to make sure you're in a good place before you can be there for your child. I know these are words that I am going to try and live by in the weeks to come.
Dr. Olivia Kessel:
Thank you for listening. Send Parenting Tribe. If you are joining us for the first time, please hit the follow button for new episodes every Tuesday. Please also follow us on Instagram at Send Parenting Podcast. We'll be posting some value added clips relating back to each week's podcast. We currently have a hundred followers and would love for you to join us. Wishing you and your family a calm week ahead.