The definition of an advocate is a person who speaks or writes in support or defense of a person or a cause . You can advocate basically anything you are in strong support of or anything that attention needs to be brought to. I believe when you have a child with epilepsy or any other disability advocating is very important. Even though its 2016 there are still incidents where people with epilepsy and other disabilities are still being discriminated against whether it’s for a job, school, daycare, or in a public place..its still sadly happening. We have to know the laws, we have to know our child’s rights and educate others.
Being a epilepsy advocate for your child is advocating for the needs and rights for your child affected by epilepsy and others. You are providing education and facts to the public, to increase awareness, get rid of stigmas and promote a safer more accepting environment for people living with epilepsy or any seizure disorder.Alot of people in our community are very scared of people with epilepsy, I know we don’t want to admit it but they are and its very hard to think about someone being scared of your child but its reality and its all because they dont know the facts about epilepsy or what to do when someone has a seizure so they just feel fear, and we dont want anyone to fear being around our child. So its our job to remove fear and create acceptance.
The best advocate for our child is us, the parents. And I know your probably thinking your new to this, you don’t know much, you never been a advocate and you dont know how to be an advocate you just want your child to be better. I understand completely there was a time where I used to cringe at the word seizure or epilepsy, I didnt want to hear the word i didn’t want to talk about it. But my son lives with it, how can I not talk about something that my son lives with? how can I not advocate for his best interest ? I had to do something. I couldn’t deal with sitting around seeing my son struggle and not do anything to advocate for him and for his disability so a little while after his diagnosis I started advocating.
Advocacy includes taking care of ourselves for starters, learning our childs types of seizures, triggers and warnings so we can educate our family, childs school/daycare, and childs job ( if you have a teenager) or any other person or place they are around. We have to do research. We have to learn the rights and laws of people with disabilities and you can do that by checking out books at your local library or visiting the Epilepsy Foundation website or American Disabilities Act website. You can also join a local epilepsy support group or foundation to get more information on epilepsy and how you can advocate.
There are many ways to advocate you can do something as small as talk about epilepsy to someone who is unfamiliar with it or something as big as having a huge event or gala for epilepsy awareness. Anything you think of to spread awareness is great ! Nothing is too big and nothing is too small, it all matters. I simply started advocating by reaching out to my local Epilepsy Foundation and getting all the info I could on epilepsy, and joining their awareness events. I then started a instagram awareness page where I promote positivity and epilepsy awareness. Iv’e also written to quite a few of my local newspapers a piece I wrote on epilepsy awareness and it actually got published in a few newspapers during epilepsy awareness month which is November, so that was great for me and now I started this blog to create awareness and support parents. So anything you think whether it’s wearing a purple ribbon, talking about epilepsy, or having a fundraiser it all counts and its all needed. Epilepsy needs all the attention it can possibly get, too many people are affected by seizures and epilepsy every day, we really need a cure for the ones who struggle with this, so we have to advocate we have to raise awareness we have to bring attention to epilepsy so one day a cure will be found along with other illnesses that need a cure.