Being a disabled parent is something that three years in I still have not got my head around how to nail. Though does anyone ever nail the toddler years? My children are, at the time of writing, three and 19 months old. Both children are owners of strong, hilarious personalities. Both currently are sound asleep, I know my daughter will wake up in the morning with a rendition of either Baby Shark or Let it go, and my son will wake up just before 6am, delighted that it’s early. I’ll wake up and relocate my knees.
Each day for us is always an unknown to some extent. We try to pace our days by following an activity timetable, which gets switched about at the start of each week. The timetable was introduced not only to help manage with being housebound more due to shielding, but also to encourage subtly paced activities without making it too obvious. The children, know that mummy is disabled and needs to do things differently to daddy, but I do try minimise to some extent how much of that they see.
It is a fine and difficult line to tread. On one hand it is important to me that they understand that everyone is different, some people are disabled and that’s perfectly fine; however my son has a very caring nature, and does worry, so I do try to shield from him some elements that at three he doesn’t need to worry about. For example, right now due to hormones all my joints are loose, this has resulted in multiple subluxes, dislocations, general spasms and fatigue over the day. He’s aware I’m tired today, and slightly sore, but he’s also ‘tickled wrestled’ me, so I know he hasn’t picked up on much.
We made the decision quite a while ago that I would no longer cook with the oven for the family. This was due to a range of issues such as seizure, spasming with a hot pan, or dislocating. My partner does the majority of cooking, and on weeks when he is on late shifts we have carers come in to cook the tea. However I still ‘cook’ I use the phrase very loosely, things using the microwave.Today, was just one of those days that was a dropsy day. Everything I touched seemed to be destined for the floor, which is exactly where the kids porridge ended up after I picked it up to heat it up. My hand spasms were so ridiculous the food had ended up on the floor before I had processed quite what had happened. It reaffirmed to me, that whilst I order the food my place is no longer in the kitchen, and provided the kids with a good few minutes of giggling.
Learning my own hacks to make disabled parenting work for me is something that is a slow learning curve that I am just getting to grips with. For example buying a second seat belt for my wheelchair so I can strap my daughter to me when we go out for a walk. Each day is never the same as we adapt to the needs of my disobedient body and the cheeky duo. The kids never fail to amaze me with how well they cope though. I used to get in a state over the possibility of the fact they had to ‘deal’ with a disabled mum. Whereas now I am so proud of the caring nature the two of them have, along with their inquisitive minds.