Over the years, we have been very fortunate to have great attendants and therapists for our son. But having all of these people in and out of your home can make you feel like you live in a fishbowl.
When my husband and I have a disagreement, someone else hears it. When our other kids want to run around in pjs or go from one room to another to change clothes, they must first check and see who else is there.
Sometimes, I want to be lazy and let the laundry or dishes pile up. There is always someone who isn’t part of our family seeing how my housekeeping may be falling behind.
Add in all of the case managers or nurses who have to come by monthly or quarterly. It can feel like our home is a business, not a home.
Early on, these things really bothered me. I was constantly trying to make sure the house was spotless before a case manager came by. I’d apologize to the attendants if the laundry started to stack up. But all that did was make me feel like my life was on display. Open to be judged by anyone at any time.
I had to make some changes about the way I acted and felt in my home.
No longer do I apologize for a sink full of dirty dishes. Nor do I get up early to scrub the kitchen and bathroom before any visits. Instead, I’ve given myself the permission to stop being so hard on myself.
I’ve reclaimed the feeling of living in our home again. By simply letting go of that stuff and reminding myself that the attendants are there for the safety and well-being of my son. They are not there to see how quickly I wash/dry/fold/put away laundry.
The case managers are not there to do a home inspection. They are there to check in to see how services are going for our family.
By simply letting us all enjoy our home just as we would if no one was watching, it has started to feel like home again!
Connecting with other parents is a great way to share and learn.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.