PODCAST · education
Raising the Extraordinary
by Aimee Tilley
Hi! welcome to my little corner of the world, my name is Aimee, I am a Mum of two, one of which has a diagnosis of CLN2 Batten Disease, with this comes epilepsy, severe learning difficulties and a whole host of other things. Day to day life can be exhausting, hard to navigate, lonely and heart breaking BUT I try to have a positive view on life, make happy memories with those that I love and care about.I want to use my experience of live so far (with a special needs child) to help others, bring a community of parents together and encourage others to live life as best they can. Through listening to me (and future guests) I hope you will learn, laugh and find enjoyment in your road aheadOver coming episodes I hope to educate, encourage, inspire, support, share and hold space for us all. I am on a learning journey which I'd like you will join me on too.A little more about me.I love: family, visiting the beach even though I don't like sand, woodlan
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5
Attending a children's Hospice
Hi! Welcome to episode 5, I recorded this during our recent visit to Rainbows Hospice in Loughborough. I hope hearing our experience of visiting will help others that are unsure of what to expect when visiting a children's hospice for respite. Raising The Extraordinary - a podcast for parents and carers raising children with additional needsPlease SUBSCRIBE, REVIEW & SHARE to help my podcast reach the people who need and want to be a part of our community. I'd like to hear your ideas for future episodes, guests you'd like to hear from and your opinions on the show. Please get in touch! PLEASE NOTE : DISCLAIMER I am not medically trained, alwaysconsult your child's health professionals before trying any therapies,exercises or tasks I talk about in ANY of my episodes. Please connect with me atwww.instagram.com/raising_the_extraordinary Hosted on Acast. See acast.com/privacy for more information.
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4
Life Lessons Since Diagnosis
The last two years, life sure has taught me a few things! I have shared just a few here with you today in the hope to help others going through the same!Raising The Extraordinary - a podcast for parents and carers raising children with additional needsPlease SUBSCRIBE, REVIEW & SHARE to help my podcast reach the people who need and want to be a part of our community. I'd like to hear your ideas for future episodes, guests you'd like to hear from and your opinions on the show. Please get in touch! PLEASE NOTE : DISCLAIMER I am not medically trained, alwaysconsult your child's health professionals before trying any therapies,exercises or tasks I talk about in ANY of my episodes. Please connect with me atwww.instagram.com/raising_the_extraordinary Hosted on Acast. See acast.com/privacy for more information.
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3
Coping with Guilt
Raising The Extraordinary - a podcast for parents and carers raising children with additional needsTRIGGER WARNING. In this episode I briefly mention eating disorders/disordered eating. Do you struggle with Guilt? It is such a strong emotional that ruin an entire day right? As Isaacs Mum I feel such intense guilt over him having Batten Disease & everything that comes with that. I feel guilty for Eva’s childhood and it not being what I had hoped for. Our emotions play a huge part in how we cope with day to day life, join me today as I talk about the small things I do to stop the feelings of guilt taking over.Please SUBSCRIBE, REVIEW & SHARE to help my podcast reachthe people who need and want to be a part of our community. I'd like to hear your ideas for future episodes, guests you'd like to hear from and your opinions on the show. Please get in touch! PLEASE NOTE : DISCLAIMER I am not medically trained, alwaysconsult your child's health professionals before trying any therapies,exercises or tasks I talk about in ANY of my episodes. Please connect with me atwww.instagram.com/raising_the_extraordinary Hosted on Acast. See acast.com/privacy for more information.
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2
Isaac's Diagnosis Journey
Raising the extraordinary – a podcast for parents and carers raising children with additional needsDuring this episode I share Isaacs diagnosis journey from speech delay to Batten Disease, it was a heartbreakingly long journey. I share some experiences of feeling let down by health professionals, how I coped and how I felt during this time. I wanted to share Isaacs diagnosis journey early on in the podcast because its such an important part of who I am today & why I am here creating this podcast. I am often asked questions about the process of Isaac being diagnosed and how it all happened, so for those who are interested, here it is! PLEASE NOTE. Unfortunately there is a sound issue from 8m35s to 12m15s. You may need to turn up the volume for these 4 minutes.Please SUBSCRIBE, REVIEW & SHARE to help my podcast reachthe people who need and want to be a part of our community. I'd like to hear your ideas for future episodes, guests you'd like to hear from and your opinions on the show. Please get in touch! PLEASE NOTE : DISCLAIMER I am not medically trained, alwaysconsult your child's health professionals before trying any therapies,exercises or tasks I talk about in ANY of my episodes. Please connect with me atwww.instagram.com/raising_the_extraordinary Hosted on Acast. See acast.com/privacy for more information.
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1
Welcome
Raising the extraordinary – a podcast for parents and carers raising children with additional needs. Are you a parent or carer of a child who has a form oradditional needs? Whether that be mild autism or a rare genetic disease? If somy podcast could be for you. After my son Isaac was diagnosed with CLN2 BattenDisease, I entered a new world that I didn’t know much about. I felt like I hadbeen thrown into a deep dark hole with no ladder to climb out. 2 Years on and I have navigated my way through many challenges.I do not claim to be an expert but I do want to use what I have learnt to helpyou. I want to bring the community of families with children with all types ofneeds and/or diseases together. Lets support, guide & nurture one another.Join me each week as I discuss different topics, chat withguests and learn alongside you as we navigate this journey together. No oneneeds to feel alone in this community, whether you’re a parent, carer, auntie,uncle, grandparent, foster parent etc come and join me. In this first episode you will learn a little about me, what itis like to be a mother of a child with Batten Disease. You'll hear about someof the battles I have faced and moving forward, what I hope to achieve withthis podcast. Please SUBSCRIBE, REVIEW & SHARE to help my podcast reachthe people who need and want to be a part of our community. I'd like to hear your ideas for future episodes, guests you'd like to hear from and your opinions on the show. Please get in touch! PLEASE NOTE : DISCLAIMER I am not medically trained, alwaysconsult your child's health professionals before trying any therapies,exercises or tasks I talk about in ANY of my episodes. Please connect with me atwww.instagram.com/raising_the_extraordinary Hosted on Acast. See acast.com/privacy for more information.
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ABOUT THIS SHOW
Hi! welcome to my little corner of the world, my name is Aimee, I am a Mum of two, one of which has a diagnosis of CLN2 Batten Disease, with this comes epilepsy, severe learning difficulties and a whole host of other things. Day to day life can be exhausting, hard to navigate, lonely and heart breaking BUT I try to have a positive view on life, make happy memories with those that I love and care about.I want to use my experience of live so far (with a special needs child) to help others, bring a community of parents together and encourage others to live life as best they can. Through listening to me (and future guests) I hope you will learn, laugh and find enjoyment in your road aheadOver coming episodes I hope to educate, encourage, inspire, support, share and hold space for us all. I am on a learning journey which I'd like you will join me on too.A little more about me.I love: family, visiting the beach even though I don't like sand, woodlan
HOSTED BY
Aimee Tilley
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