In 1991, my husband Marc and I brought our newborn baby girl home when she was 9 days old. At the time, we lived in an apartment with several steps to enter. This was just the first of many challenges I had to navigate as a disabled parent. I was born with Larsen’s Syndrome (LS), which affects all my muscles and joints. The fact that Emily too inherited LS was an emotional minefield that added to my postpartum adjustment. Emily will be 25 this July and I can truly say that parenting her has been the greatest joy to my husband and me but not without many physical difficulties that I’ve had to figure out.
We brought Emily home from the hospital in full leg casts that were attempting to reduce her knee dislocations. In addition to learning the basics of parenting (thank goodness my mom was there to help with the first sponge bath; I truly was terrified) we had to learn cast care. I also had to learn how to manage the basic task of transferring Emily because my knees don’t bend enough to be useful in this task; I need my arms to get up. I had to put Emily down in a safe spot before I could stand.
When Emily was 12 years old, I had hip replacement surgeries, which further reduced my physical abilities. But we have always done what we have to do. You know the saying: necessity is the mother of invention.
There have been many times when creativity has been needed to solve caretaking and housekeeping challenges. And these days, I am just as likely to receive help from Emily as I am to give her help with something. As I have gotten older, my physical condition has worsened and I need more help around the house. I now look at every task that needs to be done and ask if there is an easier or quicker way to do it. We are fortunate enough to live in a very wheelchair-friendly house, accomplished through several renovations. But even if your physical environment is not ideal for your disability, there are many simple and inexpensive ways to make life easier.
I make sure to de-clutter as much as possible. House cleaning is much faster if you don’t have to pick-up knickknacks. And, of course, keeping floors as clear as possible minimizes fall hazards. In the kitchen, I use several methods to make cooking and baking easier. For example, I keep the most common ingredients I use for baking right near my stand mixer. I also keep the most common sized measuring cups in my flour and sugar containers so I don’t have to search through the drawer for them or wash them after I have measured the amount I need. And when I do something messy like cracking eggs into a bowl, the bowl is on a larger plate that goes right into the dishwasher. This way, I don’t have to clean the counter of the inevitable drippy eggs. (One theme should be clear by now: I hate cleaning!)
Another way I make my life easier is to find new uses for common household items. Kitchen tongs are the hands down favorite in the Ladau household and there is one in almost every room. In order to don my socks and shoes independently, I first need to place a silicone toe separator between two troublesome toes. Because I cannot reach my foot due to elbow contractures, I use a long kitchen tong for the job. The tongs also work great to pick up the ice cubes that our fridge constantly shoots to the floor or to pick up small items like pens. Of course, we have reaching sticks too, which also can be used in unconventional ways. I attach a wad of paper towels or a dishtowel to the end if I need to wipe up a spill from the floor.
For me, these seemingly small things help me manage my chronic pain and fatigue and give me more energy to do more fun things. So, I challenge you to really look at your environment. What are your challenges? Can you think outside the box to come up with a solution? If not, don’t be afraid to ask other people or get creative.
Parenting is universally agreed upon as the toughest job in the world and being a disabled parent is even more challenging at times. For me, being a disabled parent of a disabled child has definitely been a physical challenge, but through little life hacks I’ve made over the years, I’ve found ways to make every day easier.
Neil Stillwell says
My ex wife has spina bifida, bought up 3 children & I consider her to be one of the strongest willed people I know who, without movement from waist down, saved 3 boys from drowning. But I really do know a lot of people in your position & have great respect for the people I call the hidden unpaid army with no say in the matter. I really am right behind in this & will endeavour to get this far & wide. Neil Stillwell.
Thank you for your kind words and sharing my post Neil.