Epilepsy Action’s Post

January is Glaucoma Awareness Month! 👁️ Did you know that glaucoma is the leading cause of irreversible blindness worldwide? Regular eye exams can help detect it early and protect your vision. #GlaucomaAwareness #EyeHealth Photo Description: The text in green reads Glaucoma Awareness Month. Next to the text is a green ribbon. Below the ribbon is a close up of an eyeball with a graphic of a glaucoma. Next to that is a clipboard that reads "Glaucoma is a group of eye conditions that can cause blindness. The nerve connecting the eye to the brain is damaged, usually due to high eye pressure. At the very bottom center is the Disability Advocates logo.

As the Midwest days grow shorter and the temperatures drop, we tend to seek comfort in our homes by cuddling up on the couch with a soft blanket, sipping on a warm drink, or maybe even lighting our go-to candle. 🕯️ This embrace of coziness can help create a sense of safety and relaxation, making our homes a safe place to go (or in some cases, stay) during the fall and winter months. Believe it or not, our desire for calm spaces starts at a young age, tying into the importance of accessibility and inclusivity at the playground. Cozy places on a playground do just the same, providing children with a sense of comfort, security, and relaxation. The spaces offer a break from more active and energetic play areas, allowing children to unwind, reflect, or engage in quiet activities. Not to mention, these spaces are imperative to include for children on the autism spectrum or with sensory processing disorders. Keep that cozy feeling in mind when planning for your 2025 playground! 🍂

We have worked so hard for this moment. The open beta of Decide is now available to anyone in the US thanks to our Transformative Technology Solutions grant from the Ohio Department of Developmental Disabilities. We talked to 100s of autistic and ADHD adults, and y'all, the scope of the cognitive overload and unintended consequences so many of us deal with everyday... it's mind-boggling. I'm not going to share anyone's particular story, but here are some anonymized examples of the way decision fatigue and paralysis impact how we show up at work. -I felt fine when I woke up, but when I went to make breakfast, we were out of eggs, so I couldn't follow my routine. I spent two hours sitting at my kitchen table trying to decide what to eat. At that point I had to rush to get ready and I didn't eat because I had to leave. I was short with people all day and had a hard time tracking tasks or conversations because I hadn't eaten. I wish I had a list of easy breakfasts and could randomly pick one that's super easy when I'm low energy. -I want a coffee, but Starbucks keeps changing their menu. How am I supposed to pick a coffee before I've HAD coffee?! I wish I had a list of all the drinks I like and could just pick from that until I find one from the right season. As it is, I can't tell you how many times I've been late to work because I panicked in the drive through and took five minutes to choose something and then drove off without my order because I was embarrassed. -I accidentally double-booked myself this afternoon. I don't know how that keeps happening. I know I should cancel one of the things in advance, but I can't do it. My body is staring at my phone and doomscrolling while my brain tries to process shame and priorities and what step to take first, and just vibrates with too many thoughts to take action. I wish I had a friend to tell me to do the thing I already know I should and walk me through each step like a guide rope in a snow storm. These are low stakes examples, but they accumulate until one day our lives or careers blow up. It shouldn't be this way. So we built two tools: a randomization tool that lets you choose from custom lists based on your energy level and a guided decision flow that helps you reflect on your decision, values, and context; makes and explains its recommendation; and generates step by step instructions to help you follow through. The supports people like us need are often very simple. They may seem redundant to people with typical brains, but the difference they make for us ... So that's it, y'all. We made what you asked for. We hope it helps. Try it out and tell us how we can make it better. This is just the beginning.

The second of two identical workshops on autism early support prevention will take place next month. We'll cover: 👉 how early support and interventions for autistic people can be achieved against the Care Act 👉 ways that councils can commission creatively and use third sector or voluntary and peer networks to develop early support for autistic adults 👉 how early, appropriate support for autistic adults can mitigate crisis and have a positive effect for a longer time, including cost benefit and achieving better outcomes for all 👉 and the importance of co-production from a peer perspective and against CQC outcomes. This is an in-person workshop which will take place in the North/North-East region. Exact location to be confirmed. Places are limited so book now: https://lnkd.in/eHuxWX7m

The way we understand autism has undergone a profound shift. Moving beyond labels and disorders, autism is increasingly seen as part of the rich neurodiversity that makes up our society. For Arielle Rubin, M.D., a child psychiatrist and specialist in autism, this new understanding is not just medical; it’s personal, transformative, and reshapes how we deliver care. To learn the nuances of autism and how to better serve neurodiverse patients, listen to the full episode with Dr. Rubin. Learn more: https://buff.ly/3AxXjRx

Spending too much time alone can seriously affect the mind and body of older adults. It’s not just about being there physically, it’s about showing love, preventing isolation, and improving well-being. Here’s how we can stay connected and make a difference: • Schedule regular check-ins to maintain a sense of connection. • Plan visits or outings to break up their routine and bring joy. • Encourage hobbies or introduce new activities for engagement. • Help them explore community groups or virtual classes for social interaction. At 24/7 Care At Home, we prioritize the mental and physical health of older adults by offering solutions to help them stay connected and thrive. How do you stay connected with older loved ones? Let’s share ways to make their lives fuller and brighter!

Family Voices is a partner in the National Coordinating Center on Transition, a cooperative agreement between The Association of Maternal & Child Health Programs (AMCHP) and the Maternal and Child Health Bureau. The center is focused on the transition to adulthood for young people with autism and epilepsy. This project builds on our work with the Center for Transition to Adult Health Care for Youth with Disabilities and our work on health care transition. https://lnkd.in/eMNFaUXC https://lnkd.in/gzYCbbz4

There are over 31,000 people living with epilepsy in Nevada. Did you know there are more than just 1 type of seizures? Many only think of the Tonic Clonic (shaking seizures) when they think of a seizure. As seen in this photo, there are several different types. Epilepsy affects the entire family. Disabilities affect the whole family! My 4-year-old and 2-year-old just watched my 6-year-old have a tonic clonic seizure. Can you even imagine how that affects them mentally. This is why I started Carolynn Children & Family Foundation because there are so many people struggling mentally, financially, physically every day! #epilepsyawareness #disabilityawareness #itsaffectsthefamily #raiseawareness

Interested in gaining a deeper understanding about Trauma-Informed Care? ZERO TO THREE's new Buzzwords Explained article, with insights from Joy Osofsky, is a great place to start: https://lnkd.in/gnfJWRdQ #traumainformed #childwelfare #childrensmentalhealth #earlychildhoodeducation #parenting #preschool

Important tips if you witness a seizure.