When my first child was young, I often felt like there wasn't time for the simplest of things—like baths, lunches with friends, sleeping in on the weekends, and other things that now seem like luxuries.
With our second son, who has autism and epilepsy, not only do I not have time for the simplest things, I don't even have time for the necessities.
Sitting down to eat while you are constantly trying to make sure your child, who never wants to sit and eat, eats, takes top priority. Getting that teenager into the tub without him flooding the entire bathroom replaces the long hot showers or bubble baths of long ago.
Trying your hardest to get that child to finally learn the meaning of poop IN the potty, rather than in his pants, is a monumental accomplishment. My husband has said for years that if we could get our son out of diapers before we are put in them, then our life would be complete.
We now hear the words, “I pooped" which really means, I haven't yet but I'm about to, so mom and dad literally drop everything we are doing, run to get the child, and quickly usher him to the toilet, where I am very pleased to announce our success rate is about 60%.
The biggest necessity of all is sleep. With daylight savings time here, he seems to run out of energy about 7:30 p.m. and wants to go to bed. We struggle to try to keep him awake, but no luck. He goes to bed early, we stay awake doing chores, work for our jobs, and by the time we hit the sack, he's beginning to wake up. I think I miss sleep the most.
I realize I have had a headache for 3 hours and then I just laugh—I was so busy rushing around that I didn't have time for the pain. I had no time to pee, no time to eat, no time to even throw some Tylenol in my mouth before heading out the door to begin my frantic day.
I think I need to put a sticky note on my front door. Not of sweet common sayings like, "Don't forget to stop and smell the roses" but "Don't forget to take time for the pain." Tylenol it is.
Explore more information about parenting and Navigating Daily Life with children that have disabilities.
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.