Everyone who has a child with epilepsy understands the feeling of helplessness and isolation that often accompanies it. The fact is, in finding support in others and in educating those involved, you can find a great sense of hope in your journey through epilepsy.
In this episode of the EpilepsyMoms podcast, Arlene Martell (founder of EpilepsyMoms.com) welcomes guest Laura Yake, Executive Director of the Center for Epilepsy and Seizure Education in B.C. Being experienced moms to children with epilepsy, both Arlene and Laura have invaluable information to share with others who are starting out or feel lost in this daunting journey. One of the most important lessons they convey is that you are your child’s best advocate, and that above all, you must never give up.
As Arlene and Laura discuss, “support” has many important elements:
- Support & Education is Not Only Good for You, But Can Mean a Better Outcome for Your Child – The need for support for parents of children with epilepsy is crucial. Support helps you conquer the feelings of isolation, and give you something to work towards. Parental support means not only giving you a means to cope, but as Arlene explains from personal circumstances, it can mean a better prognosis for your child.
You Must Actively Seek Support for Yourself – Laura recalls the story of herself- a mother with a young daughter suffering from epilepsy. When she couldn’t find a support system in her Fraser Valley, BC area, she put out an ad to see if anyone locally was interested in coming together for support. Her first meeting was a success- filled standing room only with other parents, teachers, teacher assistants and individuals who were desperate to learn more about the effects of epilepsy and to support one another. Through this simple act of reaching out, the Fraser Valley Epilepsy Society was soon born. Arlene and Laura discuss how to seek out a support group in your area, and if there isn’t one available, why you should consider starting your own.
- Your Advocating Involves Educating Your Child’s School – Schools are often lacking in information about seizures and the effects of seizure medications on learning and behaviour. As your child’s advocate, you can help educate teachers, teacher assistants and other school personnel on the type of seizures your child has, and how they impact learning in general, memory and behaviour. Parents also need to be aware of and teach the school about seizure medications and their impact on learning- such as their potential and unacceptable cognitive effects, blurred speech & vision, shaking, affecting memory affected, etc. The Society’s website has fantastic resources to assist you in educating your school, including videos featuring various types of epileptic seizures.
Don’t underestimate the power of support through the internet as well. You will find a community of like-minded parents sharing advice and information in the EpilepsyMoms chat forum. The EpilepsyMoms podcast also enables busy parents to find out more information and support from the convenience of their home when their schedule allows.
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