Transitioning from Childhood to Adult Healthcare — Sophie’s Story
Sophie, an adult with cerebral palsy, shares her story about the emotional journey and practical challenges of ongoing healthcare
Has there ever been a place in your life that would overwhelm you with anxiety because of its association with painful procedures? Procedures that will dramatically improve your quality of life. But on the flip side of this, you also feel a strange sense of comfort, familiarity, and acceptance.
Growing up with cerebral palsy, this was my relationship with the Children’s Hospital at Westmead. Where car journeys were often filled with tantrums as I would cling so hard onto the car seat, using all my weight to push back into the seat, making it near impossible for Mum and Dad to pull me out of the car to attend my appointments.
Whilst this place terrified me, it also brought a feeling of being accepted and included for who I was because it would be one of the few settings where I would see another kid just like me, with the same walking frame and we would be able to compare stickers that we had plastered all over our frames to make it ‘cool’. We would be having running races up and down the corridor to entertain ourselves whilst our parents talked to one another about the latest treatment for cerebral palsy. I’m sure at times, they were talking about some of the challenges that they faced bringing up children with disabilities. But for me, at the time, this was more than just about winning a running race, it was about being on an equal playing field as I knew that the person next to me experienced similar if not the same challenges.
Once I became more aware of my condition into my early teenage years, this clinic became much more than just a place to belong and connect with others, it was a place that I felt confident in the staff and doctors that I was under the care of. Because they had watched me grow over many years, but more importantly, they had the experience, knowledge, and training in cerebral palsy. This brought me a great sense of comfort and confidence to know that even if I didn’t have all the answers, I could go to them and ask for advice.
I’m sure you’re probably asking yourself: “What’s the fear all about?”, given that many people have made this transition before and seeing that cerebral palsy is a life-long disability, it would make sense that I would receive the same level of care from a different group of specialists. But you’d be wrong. Where the Children’s Hospital at Westmead referred me to is a geriatric rehabilitation unit filled with patients who were in their senior years and were there because of a medical episode such as a stroke rather than something that they were born with.
Nine years later, as a 26-year-old, I am still yet to find a specialist who treats adults with cerebral palsy and has this as their main focus.
For more information about treatments and health management as a person with cerebral palsy, My CP Guide hosts a variety of information resources that can be applicable for people of all ages. Browse the Managing CP and Health and wellbeing sections to learn more.
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Originally published at https://www.mycpguide.org.au.