Tips for survivors of childhood stroke and their families
Navigating life after childhood stroke can be challenging for survivors and their families. Dee Honeychurch (Banks), mum to Emma, who had a stroke in utero, and Mitch Fenton, a young schoolteacher who had a stroke at sixteen, share their top tips for families and survivors managing life after childhood stroke.
Tips for parents
1. Connect with the childhood stroke community
Dee emphasises the importance of connecting with others who have similar experiences. “I've been fortunate to spend time with adult survivors of childhood stroke. Listening to their stories has been incredibly enlightening. By connecting with the childhood stroke community, you’ll find support, share experiences, and feel less alone.”
Little Stroke Warriors Australia is a group for families and survivors of paediatric stroke. It provides families and cares with a supportive community to help steer them through the journey of stroke recovery. Little Stroke Warriors also raises awareness of paediatric stroke, to make sure all children affected by paediatric stroke get the treatment and care they need, and that their families are well supported.
2. Look after yourself
Caring for a child with a disability demands a lot, and Dee stresses that parents need to prioritise their own well-being. "If you’re not taking care of yourself, you won’t be able to effectively support your child. Caring for a child with a disability can require more of you. More assistance in daily activities like getting dressed, more time in understanding what your child is trying to communicate. It's just more. So, it's important to take care for yourself.”
Self-care might include hobbies, exercise, or professional support. Seeking professional support can also help you work through specific challenges, develop coping strategies and reduce anxiety.
Mental Health Plans from your GP can provide rebates for psychologist sessions. There are also some free and low-cost counselling options available. Mindspot is a free, government-funded program provides online assessment and treatment courses, and can also help you to find local services. Relationships Australia offers low-cost counselling support for people experiencing relationship difficulties.
You can call Stroke Foundation's StrokeLine Monday to Friday 9am to 5pm AEST on 1800 787 653 or strokeline@strokefoundation.org.au. StrokeLine is staffed by health professionals. StrokeLine staff take the time to listen. They provide information and support. They can help you find the services you need.
Lifeline provides crisis support 24 hours a day, seven days a week. Call Lifeline on 13 11 14. Visit lifeline.org.au
3. Connect with the disability community
Dee found that engaging with the disability community helped challenge and reshape her own beliefs. “Connecting with adults who have a disability made me confront and overcome my internalised ableism. When I connected with the adult disability community and they talked about the impact of their parents’ beliefs on them, it shifted my perspective. It has made me a better parent.” Read Growing Up Disabled in Australia by Carly Findlay and have a look at People with Disability Australia.
Tips for survivors
1. Don't be too hard on yourself
Mitch advises survivors and families need to be kind to themselves. “Whether you're a survivor or a parent, don’t be too hard on yourself. There’s no one right way to navigate this journey. Everyone's experience is unique, and it’s important to recognise that we’re all learning and growing through the process.”
Connecting with others who have similar experiences can be helpful. Heads Together for Brain Injury offer social opportunities for teens who have been impacted by brain injury. They provide a supporting and fun environment for teens with brain injury and their siblings, with a focus on emotional well-being and quality of life.
2. Make adjustments
Mitch shares his experience with adjusting to life post-stroke. “When I returned to school, I had to adapt to new challenges like chronic fatigue and memory loss, while managing a long commute. Initially I tried to push through. I eventually realised that my life had changed, and I had to adapt by reducing my school timetable and setting realistic goals. Understanding and adjusting to my new limits was crucial. By doing this, I was able to complete my education and pursue my goals.”
You can develop an Individualised Learning Plan with your school. This plan documents learning goals, skills, strengths, needs and progress. The plan also explains what supports the child or teenager needs to help them achieve their learning goals. Raising Children Newtwork and Association for Children with a Disability provide guides on how to develop a plan.
3. Focus on the small wins
Mitch emphasises the importance of celebrating progress. “I try to live my life as best I can each and every day and look for the small wins. Whether that's getting to rehab or making my own breakfast or not being tired after walking around the block. Each small win contributes to my overall progress.”
Navigating the journey after childhood stroke can be challenging. By connecting with the right communities, focusing on self-care and gradual improvements, survivors and their families can find resilience and hope. If you want to learn more about Dee and Mitch's experiences, listen to the Childhood Stroke Podcast: A lived experience of childhood stroke.