I have had several stressful jobs in my lifetime. I worked graveyard shift in a psychiatric hospital, provided direct care to adults with developmental disabilities, and worked under bosses in retail and office settings that were prone to excessive micromanaging. The most stressful of all, however, has been being a caregiver to two of my kids with special needs. Although I have a rock star husband who takes up more than his share of the load, it still takes its toll.
Don’t get me wrong; I would not trade this job for anything. I feel privileged and blessed to be able to parent these two little souls, and their two brothers who have no health issues. Parenting comes with its share of stress. Special needs parenting comes with a special class of stress all of its own.
We have a nine-year-old daughter with autism and a feeding tube, and a five-year-old son with a tracheotomy and speech delays. Both have a rare genetic condition called Oto Palatal Digital Syndrome.
The Cause of Stress
The cause of our stress ebbs and flows. Four years ago, I would tell you that the main cause of stress was our son’s health. He was averaging a hospital stay every four to six months with some type of respiratory illness. His hospital stays would last a few days to almost two weeks, mostly in a hospital two hours away from home. It seemed like we spent most of our time avoiding illness, which is next to impossible in a home with four children.
Today I would tell you that our stress comes from my daughter’s behavioral issues that go along with her autism. She melts down nearly every day to the point where she self-harms, biting and scratching herself until she bleeds. These meltdowns have increased in intensity over the last few years, and it can take up to a half an hour to calm her down. Sometimes we can divert her before she hits full meltdown mode, but those occasions are rare.
There are so many things to stress over with this type of behavior. A trip away from home, even somewhere local, has to be somewhat planned out as to anticipate any meltdown triggers. In the midst of public meltdowns she has tried to bolt across busy parking lots and has had to be carried to the car, which is getting difficult as she is not getting any smaller. Worrying about the future and what it may hold for her is a huge stress for us, although we try not to dwell on it.
Saving Your Sanity
I have many sanity saving devices. Some may not be the healthiest, or the most productive, but they have worked for me so far.
- Binge watching favorite shows on Netflix or Hulu after the kids go to bed
- Those adult coloring books really are therapeutic! I am working on a Harry Potter one right now.
- Date night with my husband, or date lunch while the kids are in school
- Sleeping in whenever I get the chance
Taking time for yourself is so important, but I know it’s easier said than done. Many associate self-care with selfishness or feel guilty for taking time for themselves. Don’t feel guilty.
As author Eleanor Brownn states, “You cannot serve from an empty vessel.” If you take time for yourself, even for an hour, to refresh and recharge, your loved ones will benefit just as much as you will.