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5 Ways We Dared to Stand Up to Epilepsy This Year

I know exactly how many days it’s been since my son’s last seizure. I know how many hours it’s been since he took his medication, and I know when that dose will start to wear off. Our family life is scheduled around these facts.

November is Epilepsy Awareness Month, and the Epilepsy Foundation is continuing its #DareTo campaign on social media to educate the public about how people with epilepsy can overcome challenges while pursuing medical treatment. When a person is diagnosed with epilepsy, neurologists advise caution. But life goes on.

Helen Keller once wrote, “Life is either a daring adventure or nothing.” The truth is, epilepsy turns almost everything into a daring adventure. That got me thinking about what my family does to maintain or improve quality of life while minimizing my son’s risk for more seizures. Here are five ways my family has dared to stand up to epilepsy this year.

1. #DareTo Be Ready

Living with epilepsy means living with the possibility of a seizure at any time or place. My son now wears a medical alert bracelet so first responders can provide appropriate care while he’s unconscious. My husband and I have both memorized our son’s emergency medical plan, and we always have his emergency medication with us. We’re also certified in CPR. Understanding what to do in an emergency makes us less likely to panic and increases our son’s chances of a positive outcome in a crisis. Being ready gives peace of mind to everyone involved.

2. #DareTo Go to School

I often think attending school is the most bold and daring thing my son can do because of the physical, social, intellectual and emotional challenges he faces daily. But he’s able to face those challenges with appropriate supports:

  • Emergency medical plan shared with all of his teachers
  • One-on-one paraprofessional educator (parapro) for safety and notetaking support
  • Safety precautions during physical education class
  • Emergency medication held by his parapro and the school principal
  • Resource room support for memory issues, homework assistance and test review
  • Peer-to-peer support organized by a student-run club during lunch

3. #DareTo Be Active

In some cases, exercise elevates blood pressure enough to trigger a seizure. But for most people, the health benefits of physical activity far outweigh the risks. Here is a sample of the ways my son has stayed active through the years:

  • Track and field team at school
  • One-on-one gymnastics lessons (no rope climbing)
  • One-on-one swimming lessons (teacher is a lifeguard)
  • Climbing on a high ropes course (using a climbing harness and steel cable to prevent falls)
  • Bicycle riding (with a helmet and an adult companion)
  • Hiking and nature walks (with at least one adult companion)
  • Horseback riding (with a helmet on a group trail ride)

boy doing backbend in gymnasium

4. #DareTo Participate in Religious Services

Many families of children with special needs do not attend services because of exclusion or the fear of exclusion. But regular spiritual practice and an active prayer life can significantly reduce stress, and therefore, may reduce the risk of seizures. In addition, belonging to a spiritual community can provide a family with an extra layer of support in times of need.  That’s why you’ll find my family in the front row at church every Sunday. When my son serves at the altar, special accommodations are made for him because it’s difficult for him to stand for long periods. Those accommodations developed organically as our clergy sought more ways to include him in the liturgy.

boy participating in religious activities

5. #DareTo Try Something New

What if…? Well, the only way to find out is to give it a try!

My family had many firsts this year, but our favorite and most daring activity was off-roading in a dune buggy. We took safety precautions by wearing helmets and 4-point harnesses, and we carried an emergency pack. We also had radio contact with a support crew. The deep sensory input, big thrills and beautiful environment brought joy to my whole family. It was a dream come true.

family off-roading in a dune buggy

How will you #DareTo stand up to epilepsy?

This post originally appeared on The Friendship Circle.

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