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The SEND Mum Club is a parenting podcast with a difference. Made specifically for parents with children with all kinds of additional needs and/or disabilities. It's a place to share the joys and challenges of raising children with extra needs, with raw, honest conversations, designed to make you feel seen and heard on a journey none of us expected to be on.
23 Episodes
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We’re back after our summer break and in this episode sisters Nikki & Louise talk about their experiences as mums of children with ADHD & Autism as well as their professional roles as rebound therapists. We discuss how working in SEND can help when parenting a child with additional needs but also how that parenting journey helps them in their job supporting other families.
We also speak about the difficulty in getting a diagnosis for an older child who is approaching adulthood and exactly what rebound therapy is and the multiple benefits it can have for children with a wide range of additional needs.
You can find Nikki & Louise on socials @rebounderstherapycentre and @louisereboundtherapy and Nikki’s contact email is reboundwithnikki@yahoo.com
Tags: SEN parenting, parenting podcast, EHCP, DLA, SEN school
It’s the summer holidays so the podcast (and me) will be going on a break. I’m going to have more fabulous guests for you from the beginning of September but in the meantime I’m going to leave you with a montage of the advice from all of my amazing guests so far!
Tags: parenting podcast, additional needs, SEN parenting, SEND
This week I’m chatting to Becky Blount about her son Bobby's health journey, including his diagnosis of pectus excavatum and ADHD. Becky shares her experiences with Bobby's surgery, recovery, and the significant changes in his quality of life post-operation. We talk about funding cuts for the pectus excavatum surgery and how Becky has campaigned to change the decision to not offer the operation to help other families in the future
You can find the charity Becky talks about in this episode here:
www.pectusmatters.co.uk
Tags: pectus excavatum, NHS cuts, surgery, ADHD, SEN SEND
Lauren James joins me to talk about her gorgeous 3 year old daughter Dottie. This is an emotional one for me because my Leo is only slightly younger than Dottie and a lot of Lauren’s initial feelings about a diagnosis of Down Syndrome mirror my own. We discuss acceptance, how to talk to siblings about a diagnosis – Dottie is one of 6, and how Lauren is dealing with developmental regression, likely caused by autism.
You can find Lauren on Instagram here @keepingupwithdotz
The books Lauren mentions about how to talk to children about additional needs are here:
https://www.amazon.co.uk/s?k=the+abilities+in+me+books&adgrpid=159542794286&gad_source=1&hvadid=696275714049&hvdev=c&hvexpln=69&hvlocphy=1007409&hvnetw=g&hvocijid=62791021235228350--&hvqmt=e&hvrand=62791021235228350&hvtargid=kwd-1105399785062&hydadcr=15245_2304951&mcid=c83807181e2e3906a0d1ff777d8041a6&tag=googhydr-21&ref=pd_sl_9r4jdif5dn_e_p69
Tags: Down syndrome, autism, development regression, SEN SEND, parenting
This week I’m joined by Jessie Townz to talk about her son Max who has Pathological Demand Avoidance (PDA) and high functioning autism. We discuss the challenges of navigating the school system and how hard it was to find Max a suitable setting where they understood his needs. We discuss the importance of advocacy, the impact of PDA on their family life, and why there is a need for greater awareness and understanding of PDA.
You can find Jessie on Instagram @jessietownz
Tags: PDA, autism, neurodiversity, sen, send
My guest this week is Charlotte House, talking about her son Barnaby who has a rare form of epilepsy. Barnaby can have up to 70 seizures a day and we discuss how Charlotte manages that and what measures have had to be put in place to keep him safe. We talk about the on-going wait to find out what’s causing Barnaby’s seizures, how Charlotte finds researching everything helpful and she gives some great advice on how to keep track of information and appointments. We also discuss the mental toll of waiting for a big upcoming surgery and how she finds time for moments of self-care throughout the week.
Tags: epilepsy, infantile spasms, brain surgery, SEN parenting
In this episode I speak to my first international guest, all the way from Australia! Steph Papas joins me to chat about her 2 year old son Archie who has the extremely rare genetic condition TARP syndrome. We discuss the emotional resilience needed to deal with a potentially life limiting diagnosis, the decision to delay telling more than a handful of people, and how difficult it is to find peer support with such a rare condition.
Steph has such a beautiful outlook on how Archie’s diagnosis has changed her as a person, and the way in which it has made her live in the present instead of always planning ahead.
Tags: TARP syndrome, rare genetic condition, SEN parenting, SEND parenting
In this week’s episode I’m joined by Kelly Sadler to talk about her 10 year old son Kobi who was born with an upper limb difference – picked up at her 20 week scan. We discuss the need for medical professionals to be trained properly to deliver unexpected news and how she felt horribly anxious for the remainder of her pregnancy after receiving the diagnosis
Kelly talks about how Kobi feels about his limb difference and what it holds him back from doing, but more importantly what he’s thriving at. We discuss representation in the media and how crucial that is, and Kobi’s breakthrough acting role in a huge Netflix hit show!
Kelly mentions a couple of charities in this episode and you can find them below:
www.reach.org.uk
www.limbbofoundation.co.uk
You can find the page Kelly runs for Kobi on Instagram here:
www.instagram.com/k_o_b_i___s__/?hl=en
Tags: limb difference, SEND, parenting
In this (slightly chaotic) episode, I speak to my husband Ben to get his version of our story with our son Leo who has Down syndrome. Ben shares his initial feelings when we got Leo's diagnosis and the ongoing journey of acceptance since. We talk about letting family and friends in and accepting support, and the important role therapy has played in his journey. We also speak about our differing opinions on the benefits of peer support from within the SEND community and why that might be harder for dads to seek out.
This episode is very kindly supported by Positive About Down Syndrome. You can access all kinds of support and information on their website here:
www.positiveaboutdownsyndrome.co.uk
Tags: SEN, SEN parenting, additional needs, Down syndrome
In this episode I'm joined by Megan Gillett to chat about her daughter Nellie, who has the terminal genetic condition Metachromatic Leukodystrophy (MLD). Although this is obviously an emotional chat I was blown away by Megan's positive attitude to life despite Nellie's diagnosis. We speak about the grief of finding out Nellie's condition is terminal, the decision to have another baby, and the logistics of genetic testing including the options open to you if you find yourself in that position. Megan speaks about the emotional journey of parenting a child with a degenerative disease, and the importance of cherishing memories and how they're going about that as a family.
You can find Megan on Instagram @megan_mumma_sunshine
The Just Giving link we talk about in the episode to support Chestnut Tree House Children's Hospice is here:
www.justgiving.com/page/rory-gillett-london-marathon
Tags: MLD, SEND, parenting
In this episode I'm joined by Abbie Bates talking about her daughter Harriet, who is nearly four years old and diagnosed with autism, global development delay, sensory processing disorder, and PICA. We talk about Harriet's journey to diagnosis, the differences between global development delay and learning disabilities, and the challenges of communication for non-verbal children. Abbie shares her experiences with an AAC device the importance of family support and understanding.
You can find Abbie on socials @happyhandsharriet_asd
In this episode I’m joined by Shona Larrigan, talking about her 8 month old baby Harry, who has Prader-Willi syndrome. We discuss the emotional impact of receiving a diagnosis, the importance of therapy and support, and the need to live in the present. Shona shares her experiences with public perception and the conversations surrounding Harry's condition, and her hope for the future with potential advances in medication. We also talk about trying to get the balance right between personal well-being and the desire to raise awareness, especially in the early days of your journey.
This episode is released in Prader-Willi Awareness Month and if you need support with a diagnosis here are some helpful links including the one Shona mentions:
Prader-Willi Association Ireland https://pwsai.ie/
Prader-Willi Association UK https://www.pwsa.co.uk/
Tags: Prader-Willi syndrome, new diagnosis, additional needs, new parent
This week’s guest is Charlotte Hunt who you might know from Instagram/TikTok as @twins_tides_and_autism_vibes. We talk about life with her sons Jude & Tommy who both have severe autism and how things have changed since Jude was born 17 years ago. Charlotte’s really honest about the breakdown of her marriage and how it felt navigating dating again as a SEND mum. We discuss introducing the boys to a new partner, going on to have (neurotypical) twin girls and how impactful their brothers’ autism has been on their family. We also talk about navigating friendships after having children with additional needs, and what you can do if you’re having struggles in that area.
Tags: neurodiversity, autism, special needs, dating, divorce
In this episode, I’m joined by Ebony Gilbert talking about her journey as mum to George, who is blind, has autism and also brain damage from a stroke at birth. We talk about the struggle of true acceptance and what you have to let go of to get there, the joy of finding your own path that works for you and your family, and the challenges of communication without being able to use visual aids. Ebony also shares some great tools to help regulate yourself when things get tough, and the life-changing impact of dietary changes on George’s autism.
Tags: blindness, autism, stroke, brain damage, communication, special needs, diet, neurodiversity
Kim Lucock is my guest this week, sharing the journey of her daughter Jessica, who has faced chronic bowel problems since birth. We talk about Jessica having stoma surgery and the impact it’s had on her life, and the complexities of navigating the education system with a child who has additional health needs. Kim talks about Jessica’s medical anxiety, the realities of living with a chronic condition, and small changes that can be made to public disabled toilets that can make a huge difference to people living with stomas.
Kim and Jessica are great advocates for stoma awareness and you can find them on socials here:
Facebook – Jessica’s Stoma Journey
Instagram - @jessicasstomajourney
X - @journeystoma
Tags: bowel problems, stoma, parenting, chronic constipation, autisam, ADHD, special needs, stoma care, body image, medical anxiety
In this episode Claire shares her emotional journey navigating the complexities of her son Jake's cardiac issues, including a heart transplant, and the effects that had on her, and her daughter Daisy. She talks about how she coped with nearly losing Jake multiple times, and how a diagnosis of autism brought a whole new set of challenges.
Claire also discusses her charitable work with Team 1C, which raises funds for children in need of heart surgeries, and supports families with children in critical care. You can find them on Instagram @weareteam1c and at www.team1c.org
Some of what Claire has been through is quite traumatic so please bear this in mind when listening, particularly if you have a child with cardiac issues.
The 2 North West based organisations Claire mentions that helped her and Jake are:
Rebounders - @rebounderstherapycentre on Instagram
The Neurodiverse Family Support Network (formerly Autism in Motion)
www.neurodiversefamilysupport.org.uk
Tags: genetic cardiac condition, heart transplant, autism, SEND, SEN, parenting
Amy Blackburn is my first guest talking about Down syndrome so this is a special one for me. In this episode Amy shares her journey of parenting her 6 year old son Remy. She discusses the emotional impact of receiving the diagnosis, the challenges of navigating day to day life, and what happened when her older children were told about Remy’s diagnosis by someone else without her consent. Our conversation delves into the realities of managing safety, education, and Amy’s worries for Remy as he gets older. We talk about Amy’s experiences with social media, good and bad, and why it’s so important to raise awareness.
Tags: Down syndrome, parenting, danger awareness, DLA, SEND
This week I’m joined by Jemma and Lisa, aka the SEND Mummies, sharing their experiences as parents of children with additional needs while running a business helping other families. They talk about their personal journeys, the challenges they face, and the importance of community support. We discuss the difficulties of navigating the SEND landscape, including the difficulties with DLA and EHCP processes, and the emotional weight of advocating for their children. Jemma & Lisa talk about their coping mechanisms for overwhelming days, the grief that can accompany the journey, and how far into the future each of them are happy to think.
You can find The SEND Mummies on Instagram & TikTok @SENDMummies or online at www.sendmummies.co.uk
Tags: autism, DLA, EHCP, neurodiversity, awareness, disability benefits, pica, echolalia, global development delay
In this episode I’m joined by Jodie Morgan, who shares her journey as a mother of two boys, Layton and Brooklyn, both with very different diagnoses. Layton has cystic fibrosis, a genetic condition that affects his lungs and pancreas, while Brooklyn has autism. Jodie discusses the emotional impact of their diagnoses, the routines they manage, and clever ways they’ve found to keep Layton motivated with his daily physio. Jodie talks about her decision to have another child, considering the implications of CF, and how she approaches parenting with a positive attitude to understanding and supporting her children's unique needs.
Tags: Cystic Fibrosis, CF, Autism, Parenting, Fitness, Health Management, Cystic Fibrosis, Stroke
In this episode Sam Young shares her journey as a mother to 5 year old Nina who has autism. Sam discusses the challenges and joys of parenting a child on the spectrum, the importance of community support, and the role of social media in connecting with other parents. She reflects on the diagnosis process, the need for better resources, and the emotional complexities of planning for the future. Sam emphasizes the significance of advocacy and education, both for her daughter and for raising awareness in society.
You can find Sam on Instagram @samninawolf
Tags: autism, parenting, special needs, diagnosis, advocacy, speech & language therapy
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