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Karen Wang
BY Karen Wang
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Epilepsy Awareness Month: 5 Ways we #DareTo Overcome Challenges

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.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.  

Helen Keller once wrote, “Life is either a daring adventure or nothing.”  The truth is that epilepsy turns almost everything into a daring adventure. Here are 5 ways that 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 that first responders can provide appropriate care while he is unconscious.  My husband and I have both memorized our son’s emergency medical plan, and we always have his emergency medication with us. We are 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 all involved.

2. #DareTo Go To School

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

  • Emergency medical plan shared with all of his teachers
  • One-on-one para-pro for safety and notetaking support  
  • Safety precautions during physical education class
  • Emergency medication held by his para-pro 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 that my son has stayed active through the years:
Epilepsy Awareness Month

  • 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)

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 every weekend. When my son assists with the service, special accommodations are made for him, because it is difficult for him to stand for long periods. Those accommodations developed organically as we actively discussed and sought more ways to include him in services.

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 our whole family.  It was a dream come true.

How will you #DareTo stand up to epilepsy?

Karen Wang

Written on November 12, 2015 by:

Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities"
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