Learning to Advocate for Yourself is a Long Process: Introducing The DayBeacon

Learning to advocate for yourself is a long process, and can be even more difficult when you have a rare, chronic or invisible illness.

Introducing The DayBeacon

When we take our children to school, kiss them on their cheeks, and tell them to have an incredible day - we are releasing them to the world. We are trusting the schools, wishing for the best, and hoping that whatever challenges our babies are presented with, they can handle them. But when your child has an invisible condition, self-advocacy can be a million times more difficult.

There are over 7 million students in US schools with diagnosed disabilities.

80% of those students spend their day in general classrooms.

Students with any kind of disability or who struggle with an invisible illness like Ehlers-Danlos, Dyspraxia, fibromyalgia or any learning disability have a lot of extra challenges to get through their day. Chronic pain, fatigue, and overwhelming situations are part of their every day, and even with the care and support of volunteers, aids and educators, there are a lot of students who have trouble advocating for themselves, speaking up when they need help or drawing attention to themselves.

As parents, we want to equip our children, and ourselves, with all the tools necessary to feel empowered, protected and set up for success. As a mom with Ehlers-Danlos and Scleroderma raising a kid with Ehlers-Danlos and Dyspraxia, I am aware of all of the hesitations and challenges with asking for help and drawing attention to invisible illnesses.

To help other parents and children with invisible conditions find the tools they need for self-advocacy and success, we created The DayBeacon.

The DayBeacon is an app that incorporates interactive technology to help students and teachers communicate more effectively during the school day. The aim is to provide tools for students to communicate their needs to their teachers and to simplify the interaction, making it as easy and effective as possible. Helping them learn to better navigate their disabilities helps them gain confidence and become their own advocate, especially in general classrooms.

The name was inspired by coastal navigation. Day beacons are an aid to navigation and help to identify potential hazards and navigable routes. We chose to name this project The DayBeacon because we wanted to find a way to help children with invisible illnesses, disabilities and other challenges learn to better navigate their school days, communicate with their teachers and advocate for themselves.

We’ve been navigating school days and a chronic condition for years now, and even with the support and kindness from our teachers, it doesn’t necessarily get easier. Every year brings different hurdles, so finding a way to help my son and other students manage each day becomes increasingly important. And, like other parents, I want my son to be independent, confident and be able to advocate for his own needs.

The DayBeacon will be launching soon!

Supporting students with invisible challenges takes a community. We are working hard to get The DayBeacon in classrooms and will need the support of the entire community to make this a success.

Living with an invisible condition can feel lonely and isolating and trying to navigate the school system can leave you feeling lost, but with The DayBeacon, you’ll have the tools, strategies, and resources at your disposal so you can feel empowered and confident, and so your child can reach their highest potential.

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