Looking After You: Mental Health & Wellbeing for Parents and Carers of Children with Brain Conditions

Looking After You: Mental Health & Wellbeing for Parents and Carers of Children with Brain Conditions

Caring for a child with a brain condition can be rewarding, meaningful and deeply joyful but it can also be exhausting, isolating and emotionally demanding. In this episode, Carrie and Sam explore the realities of burnout, mental health and wellbeing for parent carers, and why looking after yourself is not a luxury but a necessity. Joined by Dr Jane Waite, who leads Cerebra’s Mental Health Programme, Carrie and Sam have an honest conversation about the hidden emotional load carried by families, from chronic stress and isolation to guilt, grief and the pressure to keep going when your cup already feels full. A compassionate and reassuring episode for any parent who feels overwhelmed by the demands of caring. The episode covers: - Recognising the signs of burnout and emotional exhaustion - Why parent carers are at greater risk of poor mental health - The impact of isolation and the importance of finding your community - Managing guilt, self-compassion and unrealistic expectation - Practical wellbeing strategies for families with limited time and capacity - The role of respite, support services and asking for help - Balancing grief, hope and joy while navigating an uncertain future - Why thriving may look different, but remains possible You’ll also hear powerful stories from parents in the community, sharing experiences of single parenting, caring through childhood illness, navigating epilepsy and brain injury, and finding ways to hold onto hope through the most challenging times. Together, they reflect on resilience, connection and the small moments that help families keep moving forward. Helpful organisations and resources mentioned include: Cerebra – support, guides and resources for families of children with brain conditions (cerebra.org.uk [cerebra.org.uk]) Cerebra Mental Health Programme Contact – support and advice for families of disabled children Local wellbeing and counselling services via your GP Connect with us: Find out more: cerebra.org.uk [cerebra.org.uk] Follow us: https://www.instagram.com/cerebracharity/ [https://www.instagram.com/cerebracharity/] Get in touch: calm@cerebra.org.uk

The Night Shift: Helping children with brain conditions sleep better

Sleep can feel impossible when you’re raising a child with a brain condition, and when nobody in the house is sleeping, the impact reaches every part of family life. In this episode, Carrie and Sam explore the reality of chronic sleep deprivation in SEND families, from bedtime battles and sensory sensitivities to exhaustion, anxiety and the strain it can place on the whole household. Joined by Inneke Woods, who leads Cerebra’s Sleep Service, the conversation offers compassionate, practical advice for families navigating disrupted nights and overwhelming routines. Together they unpack why traditional sleep advice often doesn’t work for children with brain conditions, and why personalised, realistic support matters so much. The episode covers: 1. Why sleep challenges are so common for children with brain conditions 2. Sensory sensitivities around noise, light, clothing and routines 3. Managing anxiety, overstimulation and emotional regulation at bedtime 4. The impact of sleep deprivation on parents, siblings and relationships 5. Co-sleeping, bedtime dependency and navigating family dynamics 6. Screens, white noise and creating personalised sleep environments 7. Aggression, burnout and the wider emotional toll of chronic exhaustion 8. Why “small wins” matter and how families can find support without judgement You’ll also hear honest experiences from parents in the community, including the realities of epilepsy, shared sleeping arrangements, sibling needs and adapting family life around survival mode. A reassuring and deeply validating episode for any parent feeling isolated by sleep struggles. Helpful organisations and resources mentioned include: Cerebra – support, guides and resources for families of children with brain conditions (cerebra.org.uk [cerebra.org.uk]) Cerebra Sleep Service Cerebra Sleep Seminars and Workshops The Count Me In Lottery Connect with us: Find out more: cerebra.org.uk [cerebra.org.uk] Follow us: https://www.instagram.com/cerebracharity/ [https://www.instagram.com/cerebracharity/] Get in touch: calm@cerebra.org.uk [calm@cerebra.org.uk]

Inside the Family Network: Navigating Relationships After Your Child’s Diagnosis

In this episode Carrie and Sam talk about Family Dynamics, the reality of raising children with different needs, managing competing demands, and holding family life together through chaos, conflict and connection. Joined by broadcaster, author and parent David Grant, Carrie and Sam have an honest conversation about parenting as a team, navigating differing parenting styles, supporting siblings, and learning to let go of expectations around what family life “should” look like. A candid, reassuring episode for parents trying to balance everyone’s needs while protecting their own relationships too. The episode covers: 1. Parenting children with very different and sometimes conflicting needs 2. Coping as partners and finding a united parenting approach 3. Supporting siblings and understanding their unique experiences 4. Managing meltdowns, anxiety, and challenging behaviour within the family 5. Letting go of parenting expectations and embracing a different family dynamic 6. Why communication and protecting your relationship as parents matters You’ll also hear lived experiences from families in the community, including adoptive parents navigating diagnosis assumptions, sibling relationships, and celebrating everyday wins that may look different in SEND families. Joined later by Dr Nikita Hayden, researcher specialising in siblings of children with learning and developmental disabilities, who shares insights into sibling wellbeing, future planning, and how parents can better support all children in the family. Helpful organisations and resources mentioned include: Cerebra – support, guides and resources for families of children with brain conditions (cerebra.org.uk) Sibs – support for siblings of disabled children and adults (sibs.org.uk) Connect with us: Follow us: https://www.instagram.com/cerebracharity/ Get in touch: calm@cerebra.org.uk [calm@cerebra.org.uk] Find out more: cerebra.org.uk Follow us: https://www.instagram.com/cerebracharity/

Life Admin: Managing paperwork and practicalities when your child has a brain condition

This episode explores the overwhelming life admin families face when raising a child with a brain condition. Carrie, Sam and guest Rachel Wright unpack the emotional weight of endless paperwork and share practical, compassionate strategies to help parents feel less alone. Joined by Rachel Wright, founder of Born at the Right Time, qualified nurse and parent to children with complex needs, this episode offers honest conversation, reassurance and practical strategies for managing the hidden second job that so often comes with parenting in the SEND world. A validating listen for any parent feeling overwhelmed by the systems surrounding their child. The episode covers: 1. The emotional toll of constant paperwork and appointments 2. EHCPs, assessments and advocating within complex systems 3. Coordinating healthcare, education and social care support 4. Managing information overload and staying organised 5. Why parent carers need support too You’ll also hear lived experiences, practical advice and compassionate reflections to help families feel less alone while navigating the day-to-day realities of raising a child with a brain condition. Connect with us: Find out more: cerebra.org.uk [http://cerebra.org.uk] Follow us: https://www.instagram.com/cerebracharity/ [https://www.instagram.com/cerebracharity/] Get in touch: calm@cerebra.org.uk [calm@cerebra.org.uk] Follow Rachel Wright @bornatRightTime or connect with her https://www.linkedin.com/in/rachel-wright-0610509a/ [https://www.linkedin.com/in/rachel-wright-0610509a/] https://www.bornattherighttime.com [https://www.bornattherighttime.com] Connect with Mike Richmond@tutor_doctor_nwleeds www.linkedin.com/in/mistermiketd [http://www.linkedin.com/in/mistermiketd] https://www.tutordoctor.co.uk/resources/ [https://www.tutordoctor.co.uk/resources/] Useful Resources: SENDIASS: https://www.sendiass.org.uk [https://www.sendiass.org.uk] IPSEA (education rights and SEND law): https://www.ipsea.org.uk [https://www.ipsea.org.uk] Contact (support for families with disabled children): https://contact.org.uk [https://contact.org.uk]

Day One: When you first suspect your child may have a brain condition

Episode 2 explores 'Day One' - the moment a parent first suspects something may be different about their child. Joined by community paediatrician and parent Dr Karen Russell, Carrie and Sam unpack the shock, grief cycles and uncertainty that so many families face. A compassionate, validating episode for anyone navigating those early signs and unanswered questions. Cerebra – support, guides and resources for families of children with brain conditions (www.cerebra.org.uk [www.cerebra.org.uk]) The episode covers: - The challenges of waiting for a diagnosis, or living without one - System’s Generated Trauma - Navigating autism, neurological conditions, and rare disorders - Advocating for your child within the healthcare system - Why protecting your own mental health is essential from day one You’ll also hear real experiences from families, alongside practical advice on finding support. Helpful organisations mentioned include: - Cerebra – support, guides and resources for families of children with brain conditions (www.cerebra.org.uk [www.cerebra.org.uk]) - https://cerebra.org.uk/download/after-diagnosis-what-now/ [https://cerebra.org.uk/download/after-diagnosis-what-now/] - https://cerebra.org.uk/download/information-and-support-for-parents-of-a-child-recently-diagnosed-with-a-genetic-condition/ [https://cerebra.org.uk/download/information-and-support-for-parents-of-a-child-recently-diagnosed-with-a-genetic-condition/] - https://cerebra.org.uk/download/systems-generated-trauma-report/ [https://cerebra.org.uk/download/systems-generated-trauma-report/] - SWAN UK – support for families without a confirmed diagnosis (www.swanuk.org.uk [www.swanuk.org.uk]) - National Autistic Society – advice, support and local groups (www.autism.org.uk [www.autism.org.uk]) Contact has a comprehensive library (https://contact.org.uk/conditions/ [https://contact.org.uk/conditions/]) of condition specific information and associated support groups. Unique - support for families affected by rare chromosome and gene disorders (www.rarechrome.org [www.rarechrome.org])