Parenting done differently
By: Kylee Ostermann
One of the most challenging aspects as a parent of a disabled child is finding balance. There are so many key aspects of daily living that take their toll when under stress: relationships, work or careers, family, leisure time and self-care.
Firstly, when any new baby comes along, as a mother, you put your job on hold, but when a baby has complications and develops disabilities, that job seems almost impossible to reclaim.
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Sometimes you have to accept that you have a new job — that of a full-time carer, which means making yourself available for doctor visits, therapists, hospital stays and sickness.
The discovery that your child has a medical problem or that they will acquire difficulties can be a watershed moment in any parent-child relationship. The stress of the first diagnosis, recurrent medical appointments, concern, and uncertainty can bring partners closer together or separate them.
In my case, it was the latter. Being a single parent isn't easy by any stretch of the imagination. It's challenging to raise a child alone and you only have so much time to yourself. It's critical to enlist the help of other family members and friends, as well as to seek out respite services.
My leisure time is often limited to the weekends my son spends at his father's house. Declining invitations to social events have become a common occurrence as finding a babysitter is not so straightforward. And the option of taking a disabled child to an event isn't always easy either. I often forget or run out of time and energy for self-care and commonly have short showers, low maintenance hairstyles and easy to prepare dinners. But my biggest balancing act was and still is, finding time for my son's older sister, Erin, my first born.
The sibling of a disabled child often ends up taking a backseat in the day to day living. They can miss out on some of their own social or sporting events, playdates with friends and the big one: going away on holidays, which is a mission.
The added effort and planning involved with even a basic holiday is a huge challenge and with limited access to certain locations, it makes those simple holidays not such an easy option after all. For example, a camping holiday with limited wheelchair access, sleeping in a hot tent for daytime naps, keeping up other campers with nighttime waking, showering struggles and other general activities just seem all too hard.
Balancing what life throws at you, is hard and it's still a work in progress.