The untold stories of parenting children with special needs

Posted on 21 October, 2020

Nobody knows the unique challenges of parenting a child with a disability—except other parents who are negotiating a similar journey.

For these parents, the daily complications, struggles, joys, fears and anxieties of raising their children often remain “untold”.

But Canberra mum Pam Rogers wants this to change.

She is running her first event for parents with children with disabilities, in order to bring a network together and to provide strength, solidarity and a safe place to share experience in Canberra.

Untold Coffee and Storytelling session will run on Friday 20 November at Pialligo Estate. It will be a time for parents to meet and chat and do all of the things parents do when they come together to discuss their kids.

“I wanted to create a safe space for parents and carers to share the unspoken truths of parenthood; a community that provides an opportunity to connect, to share their journey, process their challenges, bring clarity and validity to their own emotions and fill their cup without fear of judgement or dismissal. While our events are geared towards families of children with special needs, everyone is welcome,” said Pam.

“Our stories are not often heard. We are not yet ready to talk or those around us are not yet ready to listen. Untold is an opportunity for these stories to be shared. I want to talk about things that are raw, emotional and at times uncomfortable in an empowering and uplifting environment. I want to use the Untold stories of everyday parents and carers to build community, bring validity to emotions, solidarity through shared experience and ensure our members know they are not alone.”

“Being a mum can be incredibly isolating—add the complexity of a diagnosis and additional needs it can, at times, be suffocating. Support, compassion and love are more important than ever.”

Pam’s own experience of raising Christopher, who has CMV (Congential Cytomegalovirus), has shown her how very different the path is for parents who have to manage complex and stressful circumstances around the care of their children.

Christopher is six and a half years old and requires 24-hour care.

Pam says simply: “I don’t think parents of kids without disabilities understand.”

“Challenges come in all shapes and sizes and ‘disability’ covers such a diverse range of impairments, conditions, syndromes and capabilities. They are relative to each individual’s own experiences. While my son is non-mobile, non-verbal and PEG fed, I am grateful he is alive; other families may have a hard time accepting an autism diagnosis or be devastated to learn their baby is deaf. And this is ok. No one ever really knows what another is going through—kindness, compassion and love is all we can offer.”

She has long hoped to start a safe space for Canberra parents of children with disabilities but had to defer her plans when COVID hit. Now Pam is determined to get the ball rolling so that parents can share their experiences with other parents who truly understand.

“We face different experiences as parents, ranging from physical logistics—lifting, mobility, equipment, accessibility, positioning; to behavioural risks—running endless risks assessments, scanning environments, attempting to avoid/reduce triggers and remaining hyper-vigilant to ensure everyone’s health and safety.”

“From the management of medications, appointments, therapies, treatments, routines and procedures to ensure everyone stays as healthy, strong and comfortable as possible; to the emotional stress and constant worry, the ‘what if’s’ of the future, the adjustment to the new normal, the acceptance of the disability and all that comes with it, the ongoing monologue of any I doing enough?’ and ‘was that the right decision?’.”

“I’ve found that talking openly about our daily struggles, constant complications and our deepest fears and anxieties for the future can oftentimes make others uncomfortable—so many of us just don’t. By creating a group founded in this common ground we can be vulnerable in a safe environment surrounded by people who validate and share our thoughts, fears and emotions.”

Pam said parenthood was a shared experience and social interaction was so important.

“We owe it to ourselves and our children to honour this and participate in mindful, intentional self-care. Untold is an opportunity to connect with others and fill our cups.”

You can follow Pam and her parenting journey with Christopher on her blog here.