Lacey Smith

2 months ago | medium.com | Lacey Smith

Lacey Smith·Follow6 min read·--For far too long, society has labeled differences like ADHD and Autism as disorders — problems that make it harder to navigate a world that’s catered to neurotypical minds. Words like impulsive, overly sensitive, and irresponsible get thrown around, sending a clear message: you suck. But what if those “deficits” aren’t weaknesses? What if they’re a design choice that allows us to have a deeper life experience.

Jan 18, 2025 | medium.com | Lacey Smith

Lacey Smith·Follow6 min read·--For so long, you’ve been operating on pieced-together programming that tells you there’s no greater feeling than being recognized for your goodness. The urge to chase and earn positive reinforcement from outside of yourself is ingrained in us. But it’s time to rewrite that code. When you truly remember who you are — beyond the programming, beyond the need for external validation — you will discover a love for yourself so profound that it’s unshakable.

May 30, 2024 | perkins.org | Jackie Swisshelm |Lacey Smith

Getting a CVI diagnosis is not an easy feat, particularly when other medical challenges take precedence and other conditions overshadow. It’s a frustrating but shared experience among parents and caregivers of individuals with CVI, including Sarah Fenster-Goldfarb of the Washington, D.C. area. “I felt something was a bit off early on,” Sarah says about her pregnancy. She later learned that Luka, her son, would be born with Down syndrome and Hirschsprung’s disease, a rare birth defect.

Mar 8, 2024 | perkins.org | Jackie Swisshelm |Lacey Smith

What does it mean to live life to the fullest? Is it all about taking risks and embarking on adventures, or embracing the beauty of your surroundings and finding joy in the everyday moments? For 8-year-old Bruce, it’s the latter. “He has a very bright view of the world,” according to his mother, Danielle. Bruce, who has CVI and Angelman syndrome, both creates and enjoys the pleasures in everyday life.

Nov 21, 2023 | perkins.org | Jackie Swisshelm |Lacey Smith

When deciding what is best for your child, take a whole-child approach. What does your child enjoy? What motivates your child? What upsets your child? What provides calm?  To help get you started with gift-giving, we created a guide with over 100 ideas—all informed by parents and caregivers from our CVI Now community. This guide is meant to offer inspiration and by no means is exhaustive or definitive, just a place to find some ideas.