Self-care Is Essential for Special Needs Parents

As special needs caregivers, we have many responsibilities. From the moment we open our eyes in the morning until the time our heads hit the pillow at night, our primary focus is caring for our child and their needs. While there’s nothing wrong with that, it can be a bit exhausting from time to time. 

Because of this, it’s important to remember to care for ourselves, too. We spend so much time focusing on the child that it’s not hard to forget that we are human. Everyone needs a little self-care once in a while. Whether that be lunch with friends, a trip to the store, or even just a day to rest, it’s important. 

If a caregiver doesn’t ever make time for themselves, they may experience what’s called caregiver burnout. This is when one enters a state of physical, mental, and emotional exhaustion. It can cause a change in attitude that typically wouldn’t be expected. 

I almost never accepted help during the first year and a half of Cayden’s life. After doctors diagnosed him with infantile-onset Pompe disease, I couldn’t trust anyone but myself to care for him. Family and friends would try their hardest to help, but I’d almost never accept it. 

However, as he got older, I realized that I did indeed need the help. Being a single parent and a teenager was a hard combination in itself, but all of Cayden’s special needs made life even more difficult. I was trying so hard to keep track of all of his therapies, specialist appointments, infusions, and basic baby needs.

This caused me to forget that I still have my own life. I missed the little things like hanging out with my friends, getting my nails done, and shopping sprees. Once Cayden was almost 2, I started showing the people in our family how to care for him. I had to teach them everything: how to feed him through his G-tube, hook him up to the BiPAP machine at night, and administer his breathing treatments. 

Once they had all learned and felt comfortable, I began leaving Cayden with them so I could have time to enjoy myself. This was one of the best decisions I’ve ever made. Finally, I felt like a person again! I was able to stop taking my antidepressants, feel more energized, and just became overall happier. 

Now my grandparents typically watch Cayden every other weekend. They love their time spent together and have become some of his biggest supporters. I could not be more thankful for all of their help. 

Cayden, 6 months, with my grandparents. (Photo by Keara Engle)

While I will say that I feel bad sometimes for having time to myself, I know that it’s important. It’s not uncommon to feel bad when spending some time away from your child, even if they don’t have special needs. But just keep reminding yourself that self-care truly is needed! 

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Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.