Being the caregiver of a child or loved one with a complex medical disorder who has health and behavioral issues is not easy, which is the driving force behind this year’s theme of the HH Blog. I combat this challenge too, as I am a parent of a child with a rare genetic disorder but work as a neuropsychologist to children with epilepsy. This blog was meant to be out at the beginning of March but it is not.
The reasons why are familiar to HH families:
- had several calls from school/sitter about my child’s behavior and had to pick them up;
- had doctor’s appointments to go to;
- had forms to fill out for camp/medical services, which has to be done eons in advance because of all the information that needs to be collected;
- medications needed to be filled and arguing with the health insurance company over coverage;
- day-to-day food, laundry, and errands;
- my job expects me to actually work for my pay, and reasons 7. 8. 9…..
- …all the unexpected things like the dog limping for no apparent reason, talent show at school, friends in town to visit. Some reasons are for fun and others are less so. The point is that the demands often outweigh my resources, which leads to stress.
It is important to remember that combatting stress is an ongoing process. Similar to our loved one with HH, what works today, may not work tomorrow. Thus, one of the best skills you can develop is being able to recognize your own level of stress, preferably before it rears its ugly head in ways you didn’t intend. For example, the amount of yelling in the house may be a telltale sign that the stress level is going up. It isn’t just kids that yell, but adults too. For those of you who internalize stress, you are the slow burners that all of a sudden have a physical ailment (e.g., ulcer, poor sleep, weight gain) that is a serious problem but might have been addressed much sooner. Sometimes the one we care for is the canary in the coal mine who can let us know that there is some imbalance in how the family is running. Ensuring that everyone in the family is checking their stress level is important for the whole household. It isn’t always the person with HH that needs to be tended to, and as they grow out of childhood, they don’t always want to be the center of the family’s attention. In other words, the more you as the caregiver are not stressed, the more the person with HH is also unburdened.
The ongoing nature of combatting stress leads to the idea of making progress in different ways, big and small. For example, one might have surgery to eliminate the seizures associated with HH which is a large, important step forward. On the other hand, adopting day-to-day management techniques is often just as powerful and can add up to as large an impact. I am referring to the moment you take to listen to a good song (my current go-to song to get pumped up is Panic! At the Disco’s “High Hopes”), reach out to someone else and get out of your own head (that is my strategy today by writing this blog), walk your dog, exercise, print out forms, fix the broken faucet, or don’t do anything for 10 minutes. No matter what it is, it has to work for you. Rediscover some passion that is yours. These everyday techniques are mini-respites when it is unrealistic to book that weekend away; everyone needs a little bit of escape. Some of us find it in leisure activities; others feel best with a task crossed off the list. It has been said many times but being in the moment is essential so that you can recognize that you are de-stressing and appreciate it, so that it counts for you.
Other suggestions and support for how to combat stress are all over the internet.
- 9 Stress Management Techniques For Special Needs Parents
- Stress Management for Parents of Special Needs Children
- 6 Things that Help Me with Special Needs Parenting Stress
- Managing Stress
- Support for Patients & Caregivers
Guest Blogger – Dr. Madison Berl
Dr. Madison M. Berl, Ph.D., ABPP, a board certified pediatric neuropsychologist at Children’s National Health System and Director of Research for the Division of Pediatric Neuropsychology. She is the neuropsychologist for the epilepsy team at Children’s and serves on several committees within the American Epilepsy Society and International League Against Epilepsy.
Dr. Berl was also one of our featured speakers at the 2017 Hope For HH Family Conference. Here presentation focused on Cognition and Memory.