When Children Stare at Disabilities: Turning Curiosity into Connection

7 Essential Tools That Helped Our Daughter After A Hemispherectomy Brain Surgery

When our daughter underwent a hemispherectomy at just four years old, we had no idea how many small tools and adaptive products would make such a big difference during and after her recovery. While we were still in the hospital, another epilepsy mom—whose daughter had also undergone a hemispherectomy—visited us with a gift bag full of items we didn’t even know existed. Looking back, those thoughtful gifts became some of the most valuable tools we used during rehabilitation and continue to use years later. In this episode, I’m sharing the seven products that helped our family navigate life after hemispherectomy surgery, including: * A Dycem mat for improved stability during play, meals, and schoolwork * A whiteboard slant board to support reading and writing with a visual field loss * Search-and-find books to encourage visual scanning after hemianopia (partial visual impairment) * A sensory brush to increase body awareness and sensory input * EZPZ plates and bowls for greater independence during meals * Small therapy balls to encourage two-handed play and use of a helper hand * How an adaptive stroller became an essential part of our family’s daily life Whether your child is preparing for or  currently recovering from a hemispherectomy, or you’re simply looking for practical ideas from another parent who’s walked this road, I hope this episode provides encouragement and saves you some trial and error. You don’t have to figure everything out on your own. Sometimes the smallest tools can make the biggest difference. If this episode encouraged you, please subscribe, leave a review, and share it with another family navigating pediatric epilepsy or hemispherectomy recovery. Together, we can help more parents feel supported and less alone on this journey. #Epilepsy #InfantileSpasms #SpecialNeedsParenting #DisabilityParenting #EpilepsyMom #SpecialNeedsMom #DevelopmentalDelays #ParentingJourney #CaregiverSupport #ParentingEpilepsy

Little Breaks, Big Impact - Self Care Tips for Special Needs Moms and Caregivers

Being a caregiver for a medically complex child is one of the most demanding roles a parent can take on — and some weeks are harder than others. In this episode, I'm sharing a particularly tough week in our journey caring for our daughter, who has epilepsy and a complex medical history, and the powerful lessons I took away from it. In this episode, I cover: * What happened when our daughter experienced cluster seizures and her rescue medication stopped working as expected * How connecting with other epilepsy parents in online communities led to a game-changing discovery about rescue medication timing * The warning signs I learned to watch for and how trusting my gut made all the difference * Why I almost skipped taking care of myself — and why I'm so glad I didn't * Simple, small ways to recharge when you're running on empty as a caregiver Key Takeaway: You don't need a vacation or a big event to feel like yourself again. A walk, a coffee with a friend, or even a quick drive can have a bigger impact on your mental health than you think. Special needs moms and caregivers — you deserve a break too. Facebook Group Mentioned: Pediatric Epilepsy Surgery Support Connect with me:  If this episode spoke to your heart, share it with another parent who might need a reminder that they’re not alone. You can connect with Erica on Instagram @parentingepilepsy_specialneeds and be part of a community that understands the ups and downs of the special needs & epilepsy parenting journey. #Epilepsy #InfantileSpasms #SpecialNeedsParenting #DisabilityParenting #EpilepsyMom #SpecialNeedsMom #DevelopmentalDelays #ParentingJourney #CaregiverSupport #ParentingEpilepsy

Three Questions That Could Change The Rest of Your Year

Can you believe we’re already halfway through the year? As moms, especially moms caring for children with epilepsy, special needs, or complex medical conditions, we spend so much time focused on everyone else that we rarely pause to reflect on ourselves. The days are busy, the schedules are full, and before we know it, months have passed. In this episode, I’m sharing a simple exercise inspired by a recent podcast that challenged me to stop, reflect, and think intentionally about the rest of the year. Together, we’ll explore three questions that can help you celebrate your accomplishments, create something meaningful to look forward to, and focus on one goal that could make a real difference in your life before the year ends. If you’ve been feeling overwhelmed, stuck, exhausted, or simply wondering where the year has gone, this episode is your reminder that it’s not too late to reset. In This Episode We Discuss: * Why a mid-year reset can be exactly what you need * The importance of celebrating your accomplishments, even the small ones * Why having something to look forward to can help you navigate difficult seasons * The power of focusing on one goal instead of trying to change everything at once The Three Questions: 1. What have you accomplished this year that you are proud of? 2. What are you looking forward to this year? 3. What is one thing you would like to accomplish before the end of the year? A Reminder for Every Mom: Your accomplishments matter. Maybe you’re proud of getting more sleep, advocating for your child, attending appointments, getting your child to school on time, making time for exercise, or simply showing up every day when life feels hard. Small wins are still wins. And if you can’t think of anything you’re looking forward to right now, consider that your sign to create something. Schedule the coffee date, plan the walk, book the getaway, or put something meaningful on your calendar. You deserve to have something that brings you joy. The year isn’t over. It’s not too late to reset, refocus, and move toward what matters most to you. Thank you for being here and for allowing me to be part of your journey. If this episode encouraged you, please share it with another special needs mom who could use a reminder to pause and reflect. Until next time, take care of yourself one day at a time. #Epilepsy #InfantileSpasms #SpecialNeedsParenting #DisabilityParenting #EpilepsyMom #SpecialNeedsMom #DevelopmentalDelays #ParentingJourney #CaregiverSupport #ParentingEpilepsy

They’re Not Broken: What Happens When We Stop Trying to Fix Our Children

When your child is diagnosed with epilepsy, infantile spasms, or other complex medical needs, it’s natural to go into problem-solving mode. We search for treatments, therapies, specialists, and solutions because we want to ease their suffering and help them to not only survive but to also thrive. But what happens when that mindset begins to spill over into every aspect of our child’s life? In this episode, I share a deeply personal story about my daughter Katie and the moment I realized that while I would never stop advocating for her health, therapies, education and opportunities, it was no longer my job to “fix” her. After years of focusing on milestones, progress, and helping her catch up, I found myself exhausted and constantly worried about what she wasn’t doing yet. Then came a pivotal realization: my daughter isn’t broken. She learns, grows, and develops at her own pace—and that’s okay. Join me as I talk about the difference between supporting our children and trying to change who they are, why acceptance can be one of the greatest gifts we give ourselves as parents, and how shifting this perspective brought me a sense of peace I didn’t know I needed. If you’re parenting a child with epilepsy, disabilities, developmental delays, or special needs, this episode is a reminder that your child does not need to be fixed. They need love, support, patience, and the opportunity to become exactly who they are meant to be. Connect with me:  You can connect with Erica on Instagram @parentingepilepsy_specialneeds and be part of a community that understands the ups and downs of the special needs & epilepsy parenting journey.

What I Would Tell the Scared Mom That I Was

There are certain photos that instantly transport us back to a specific moment in our lives. Recently, I came across a photo of myself holding my four-month-old daughter, Katie, just two days after our first epilepsy-related hospital stay. While everyone around me was excited for Christmas, I remember sitting in that school gym filled with fear, uncertainty, and questions that seemed impossible to answer. Why was this happening?Would the seizures stop?What would the future look like for our daughter and our family? In this episode, I reflect on that moment and share the words I wish I could say to the scared young mom sitting in that photo. This is also a message for any parent who has recently received a diagnosis, is searching for answers, or is navigating a season of uncertainty with their child. If you’re feeling overwhelmed, uncertain, or afraid of what comes next, I hope this episode reminds you that you are stronger than you realize, you’re not alone, and it’s going to be okay—one step and one day at a time. Connect with me:  You can connect with Erica on Instagram @parentingepilepsy_specialneeds and be part of a community that understands the ups and downs of the special needs & epilepsy parenting journey