Audra’s Story
My name is Audra (Momma Employee) and I have a son (The Boss). We are both autistic and have epilepsy! We are both trying to navigate this complex world, together. He runs my schedule and we experience love and life as one family. Our journey comes with ups and downs, but we would not have it any other way. Welcome to our crazy, funny, weird, socially awkward, introverted, anxiety-ridden, happy, joyful page!
Related article: David on IEPs, 504 plans and the need for epilepsy awareness in education
The 504 and the IEP: Five Steps to Take for Understanding Your Child’s Rights
Step 1: Learn together
Epilepsy Training for Staff: Yes, you as the parent can request yearly epilepsy training for anyone who encounters your child. This is written into the Individualized Education Plan (IEP). The school might say that only the nurse or medical provider needs to do it, but this is not the case. Any teachers, bus drivers, aides, therapists, or medical staff need the training.
Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.
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