Parenting a child with a disability
The other day my son Jack had me record him presenting a YouTube introductory video guide to the planets for other kids. He sat in his specialised chair, using a Harry Potter wand as a pointer, as he explained his way through his home-made, colour-pencil picture of the Solar System. He spoke without notes and my heart was bursting with pride. But nine years ago I could never have dreamt such a thing as I battled to understand how to parent a child with Cerebral Palsy, something for which I felt so completely unprepared.
When my husband and I welcomed our first baby into the world, our cup, as they say, runneth over. But within weeks we knew that Jack was not going to do all the things the ‘What to Expect’ guides had promised us. Despite his happy and alert disposition, he couldn’t hold his head up properly, couldn’t roll or crawl, and finally our suspicions of Cerebral Palsy were confirmed at about 5 months old.
With that, my collection of baby guidebooks which had been at arms’ reach on my nightstand for over a year, went into the bin. We were on a journey we hadn’t prepared for and had no idea where we’d end up.
I had been suddenly thrust into a parallel universe from the one the other mothers in my Mother’s Group lived in – doing all the same things as them, comparing nappy prices and stories of sleeplessness and baby vomit – only never really being able to engage or relate fully. The outsider looking in.
There were feelings of guilt and helplessness. I would brace myself for the sympathetic looks from family and friends, them trying to be positive and assuring me he would somehow ‘grow out of it’ or that modern medicine would ‘find something’. They meant well but it only made me sad, frustrated and unsure of my ability to be the pillar of strength my son would need.
Building a support network changed that
I discovered that I don’t actually need to be the only pillar of strength. Over time, I’ve been able to find an assortment of specialists, therapists, teachers and parents in a similar situation to get advice from, troubleshoot problems with and socialise. They’ve helped ensure that while at school, Jack is well-supported with equipment, carers and adapted programs to accommodate his different needs and include him equally. That support network is essential for me also, both physically and mentally.
Today, with a younger able-bodied child as well, we just get on with things
Life is still a challenge: as Jack grows his needs change so we need to discover new methods or equipment to lift him or encourage him to transfer himself as much as possible. I worry about his independence and his dignity. His social life is a challenge as kids his age are active and Jack finds it hard to keep up. And when he gets down we talk about resilience and ways to find and keep friendships. But I worry equally about my other child too – parents do that!
So as I help Jack to prepare for his next YouTube video, and he gives me instructions on every aspect of how it needs to be, I’m not thinking about Jack as my disabled son. I’m thinking how clever he is and how on earth am I going to keep up with him as he grows and becomes an even more amazing person. A person who just happens to have a disability.
Rachelle is an Australian mother of two who often writes about challenges she faces with parenting a child with a disability. You can view her blog at https://hillofhello.blogspot.com.au/