You can love your child fiercely and still feel completely unprepared for what their body asks of you. Steve Wellings, Ben’s dad, joins us again to help you meet Ben properly: a gentle, funny, observant kid living with quad athetoid spastic quadriplegia cerebral palsy, where speech and movement are limited but presence is not.
We walk through the real world details of disability parenting and complex medical needs: positioning, splints, standing frames, PEG feeding, incontinence care, clearing lungs, night turns to prevent pressure sores, and the constant job of working out what a look or a mouth movement actually means. Steve shares the moments that changed everything, including the first time Ben’s eyes tracked in a quiet, dim room, and why reducing sensory overload is not a preference but a safety issue for some kids.
The conversation also gets honest about seizures and medication, including the fear of dangerous infant spasms, the pressure of fast decisions, and the reality that dosages and drug mixes rarely stay “right” for long. Along the way we talk about the disability community, fighting for better services, the impact on siblings and relationships, and why the best therapists and schools are the ones who listen first and collaborate closely with families.
If you care about cerebral palsy support, augmentative and alternative communication, NDIS era gaps, inclusive schooling, and quality of life, this one will stay with you. Subscribe, share with someone who needs it, and leave a review so more families find these stories.
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