The Parenting Epilepsy and Special Needs Podcast with Erica Hauser

Erica Hauser
  • 4.3 (6)
  • Parenting
  • Updated Weekly

As a mother and caregiver of a child with a complex medical background and special needs that all started as a result of epilepsy, I felt a calling to create a podcast that tells the story of our journey. A podcast that talks about moments of strength, the ups and downs and the lessons that we have learned along the way. Myself and my family have become stronger and are better humans because of what we've gone through. So come along with me, listen, learn and become apart of a community of parents, caregivers and families who understands what it's like to walk a day in your shoes.

  1. 22h ago

    The Hard Seasons Can’t Last Forever

    As moms raising children with epilepsy, special needs, and complex medical needs, we know that some seasons of life can be incredibly difficult. In this episode, I’m sharing a reminder that even the hardest seasons cannot last forever. After a recent medication change for our daughter, we found ourselves navigating unexpected side effects, vomiting, difficulty eating, and a trip to the emergency room. It was a stressful and an uncertain time, and I’m sharing how we are working through it with her medical team and how things gradually began to improve. If you’re in a particularly challenging season right now, I hope this episode reminds you that you are not alone. You don’t have to pretend it’s easy, and you don’t have to have everything figured out today. Keep taking things one day at a time. And remember, if we didn’t experience the rough days, we might not appreciate the amazing and really good days quite as much. Connect With Me Follow me on Instagram: @parentingepilepsy_specialneeds If this episode resonated with you, please share it with another mom or caregiver who might need this reminder today. And don’t forget to rate or review the podcast. Your support helps this show reach more families who need to know they aren’t alone. Thank you for listening to The Parenting Epilepsy and Special Needs Podcast. Until next week, stay strong and keep being the amazing mom that you are. Medical Disclaimer: This episode shares my personal experience as a parent and is for informational and supportive purposes only. It is not medical advice and should not replace guidance from your child’s healthcare team. Always consult your child’s medical provider about medication changes, symptoms, or treatment decisions.

  2. Oct 7

    When You’re Scared and Unsure: Trusting the Process Through a Medication Change

    Medication changes are something many parents of children with epilepsy know all too well. You follow the schedule. You monitor for side effects. You communicate with your child’s medical team. You hope the new medication will help. But what happens when your child starts acting differently and you begin to wonder, Is this medication really right for her/him? Is she/he going to be okay? In today’s episode, I’m sharing a very real and very recent experience we’ve been going through with our daughter as we transition from one seizure medication to another. She began experiencing significant fatigue after starting the new medication, and suddenly I found myself questioning everything. Was the medication causing these changes? Would she adjust? Should we continue with the plan? Was something else going on? And then, when additional symptoms appeared, my medical-mom brain went into overdrive. I cried. I questioned. I worried. I wanted my happy, silly girl back. But through all of the uncertainty, I was reminded of something my husband has told me many times before: Trust the process. That doesn’t mean ignoring your concerns or blindly moving forward. It means staying connected with your medical team, paying attention to what your child is telling you through their behavior and symptoms, trusting your instincts, and taking things one step at a time. You have been through hard things before. And you can do this, too. Connect With Me If this episode resonated with you, please share it with another mom or caregiver who may need this reminder today. And if you enjoy the podcast, please take a moment to rate or review the show. Your support helps this podcast reach more parents who are navigating epilepsy, special needs and complex medical journeys. Follow along on Instagram: @parentingepilepsy_specialneeds Medical Disclaimer This podcast shares my personal experiences and is intended for informational and supportive purposes only. It is not medical advice and should not replace guidance from your child’s doctor or medical team. Medication changes should always be discussed with your child’s healthcare provider. If your child is experiencing a medical emergency or severe or concerning symptoms, seek immediate medical attention or call 911.

  3. Oct 1

    Protecting Our Energy As Medical and Special Needs Moms

    As moms and caregivers of children with epilepsy, special needs, and complex medical needs, it can feel like there is always something that needs our attention. Doctors appointments. Therapies. Medications. School. Work. Family activities. Emergencies. And then there are all of the everyday responsibilities that come with being a mom, wife and caregiver and… the many other roles that we have. For years, I thought keeping everything moving meant I was doing a good job. But eventually, I realized something important: I couldn’t continue giving my energy to everyone and everything while consistently putting myself last. In this episode, I’m talking about what it means to protect your energy as a medical and special needs mom and why this isn’t selfish—it’s necessary. I share some of the changes I’ve made over the years to become more intentional about where I spend my time, attention, and energy, including learning that not everything requires an immediate response, being more selective about the people I spend time with, and recognizing when I actually need rest instead of another hour of scrolling on social media or attacking my to-do list. You may not be able to change your circumstances, but you may be able to make just one small positive change in how you spend your time and energy. In this episode, we talk about: Why medical and special needs moms can feel constantly exhausted and overwhelmed The pressure to keep everything moving and take care of everyone How I realized that putting myself last isn’t sustainable Learning to recognize what—and who—is draining your energy Being intentional about the people you spend your time with Recognizing when you need to rest and what that should look like Giving yourself permission to go off track and start over - we are all a work in progress Making small, positive changes instead of trying to change everything at once Asking yourself: “Is this something I truly need to give my time and energy to?” A challenge for you:This week, I want you to stop and think about where your energy is going. Who are you spending your time with? What are you thinking about every day? What activities are draining you? What could you say no to, postpone, delegate, or simply stop doing? You don’t have to completely change your life.  Start with one small adjustment. Protecting your energy isn’t about being perfect. It’s about becoming more aware of what allows you to show up as the mom, caregiver, wife, friend or simply the version of you that you want to be. And when you have a hard day—or a hard week—you can come back to this process and begin again. Remember:You are allowed to protect your energy. You are allowed to slow down. You are allowed to say no. And you are allowed to take care of yourself, too. If this episode resonated with you, please share it with another mom or caregiver who may need this reminder. And if you have a moment, please rate and review the podcast. It helps this show reach more moms who are parenting children with epilepsy, special needs, and complex medical needs. Follow along on Instagram: @parentingepilepsy_specialneeds You don’t have to navigate the epilepsy and special-needs parenting journey alone. DisclaimerThis podcast is for educational and informational purposes only and is not intended to provide medical, mental health, or professional advice. The information shared should not replace guidance from your physician, healthcare provider, or other qualified professional. Always consult your healthcare team regarding your individual health and medical needs. #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis

  4. Sep 23

    When Is It Time to Explore Epilepsy Surgery? Our Family’s Journey to a Surgical Workup

    When do you know it’s time to explore epilepsy surgery? This is a question I see come up again and again among parents of children with complex drug resistant epilepsy, and it’s one that my husband and I had to face when our daughter was still a toddler. In this episode, I’m sharing our personal journey of how we went from trying multiple medications to beginning an extensive epilepsy surgery evaluation—and ultimately making the incredibly difficult decision to move forward with a hemispherectomy. Our daughter’s epilepsy journey began with infantile spasms. After initially becoming seizure-free with medication, her seizures returned around 18 months old and quickly became more difficult to control. We tried multiple anti-seizure medications, but the seizures continued. Our medical team initially explored a right frontal lobectomy, hoping to control the seizures while preserving as much function as possible. Unfortunately, seizures returned just days after that surgery and continued to worsen. Eventually, the possibility of a hemispherectomy entered the conversation. In this episode, I talk about: • What led us to begin an epilepsy surgery evaluation • What the epilepsy surgery workup looked like for our family • The emotional toll of waiting and making a life-changing decision for your child • Things I wish I had done differently to support myself and our family emotionally • Why taking care of yourself during this process matters, too • And perhaps most importantly: why beginning a surgical workup does not mean you have committed to having surgery If you are currently considering an epilepsy surgery evaluation for your child, I hope sharing our experience helps you feel a little less alone. Every child’s epilepsy journey is different, and the decision about whether surgery is appropriate should be made with your child’s epilepsy care team based on their individual diagnosis, testing and circumstances. A resource I strongly recommend:The Pediatric Epilepsy Surgery Alliance (PESA) provides information and support for families navigating epilepsy surgery and the surgical evaluation process. https://epilepsysurgeryalliance.org/about/surgery-info/surgical-evaluation-process/ A note from me: I am sharing our family’s experience—not medical advice. If you are wondering whether an epilepsy surgery evaluation may be appropriate for your child, talk with your child’s epileptologist or epilepsy surgery team. And remember: a surgical workup is a process of gathering information. It does not automatically mean surgery. If this episode could help another epilepsy parent, please share it with them. And if you’re enjoying Parenting Epilepsy & Special Needs, please consider following the podcast and leaving a review. It helps other parents just like you find this community. Connect with Erica: Instagram: @parentingepilepsy_specialneeds You don’t have to navigate the epilepsy and special-needs parenting journey alone. #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis

  5. Sep 16

    The Feelings We Don’t Talk About: Making Space for the Hard Parts of Parenting Epilepsy

    When you’re parenting a child with epilepsy or complex medical needs, there can be so much to manage that your own feelings get pushed to the bottom of the list. The appointments. The medications. The seizures. The research. The decisions. The therapies. The uncertainty about what comes next. And somewhere in the middle of all of it, you may find yourself simply… keeping busy. Keeping busy to avoid the very valid and true feelings that you are having. In this episode, I’m talking about something I wish I had given myself permission to do more of during the years leading up to my daughter’s hemispherectomy surgery: feel my feelings and get them out into the open. During those early years of parenting a child with epilepsy, when my daughter was between 1 and 4 years old, I experienced so many emotions—anxiety, fear, sadness, anger, overwhelm and exhaustion. But instead of really processing those feelings, I often pushed them down and kept moving. There was always something else that needed to be done. And when you’re faced with decisions as enormous as considering brain surgery for your child, it can feel almost impossible to explain what you’re experiencing to someone who hasn’t lived it. You can feel hopeful one day and terrified the next. You can believe that surgery might be the answer while simultaneously wondering, How is this even my life? Why does my child have to go through this? Those feelings CAN coexist. And having them does NOT mean you are a bad mom, an ungrateful mom, or a weak mom. It means you’re human. In this episode, I share my own experience of pushing difficult emotions down and why I now believe it is so important for moms and caregivers to make space for what they are feeling. In this episode, we talk about: Why moms of children with epilepsy and special needs may push their emotions aside The anxiety, fear, sadness, anger and overwhelm that can come with a complex medical journey Why staying constantly busy can sometimes become a way of avoiding difficult feelings Why it’s okay to vent without wanting someone to “fix” the situation Journaling, meditation and therapy as possible ways to process difficult emotions Why having hard feelings does not make you a bad or ungrateful mom Giving yourself permission to be human while caring for your child Sometimes the strongest thing we can do is acknowledge what we are feeling, give ourselves permission to feel it, and find a safe place to let it out. If you’re in the middle of a difficult season right now, I hope this episode reminds you that you don’t have to carry every emotion alone. You are strong. You are brave. And you are human, too. Connect With Me If this episode spoke to your heart, share it with another parent who might need the reminder that they are not alone. Follow along on Instagram: @parentingepilepsy_specialneeds And if you enjoyed this episode, please consider following the podcast, leaving a review, and sharing this episode with another mom or caregiver in the epilepsy and special needs community. Your support helps this podcast reach other parents who may need to hear these words. Thank you for being here, and I’ll see you on the next episode. #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis

  6. Sep 10

    Life With a Wheelchair: The Everyday Challenges of Parenting a Child With Epilepsy and Disabilities

    There are so many things that nobody prepares you for when you become the parent of a child with a disability, complex medical needs, and mobility challenges. For our family, life changed significantly after our daughter underwent a hemispherectomy at just 4 years old. When we left inpatient rehabilitation with a wheelchair, we thought it would be temporary. However, life went a different direction than we originally anticipated and her wheelchair became her primary way of getting around. Over time, I had to learn how to adapt—not only to caring for a child who uses a wheelchair, but also to all of the everyday planning, problem-solving, advocacy, and adjustments that come with it. In this episode, I’m sharing some of the everyday things I never realized would become part of our lives as a family raising a child with epilepsy, disabilities, and complex medical needs. We’ll talk about: • Grocery shopping and planning ahead when you’re out with your child• Calling restaurants to make sure they can accommodate a wheelchair• Navigating birthday parties• Traveling• Finding accessible and family bathrooms in public places• Responding when children stare or ask questions about a wheelchair• Bathing, grooming, and caring for a child with physical disabilities as they grow older• The emotional side of realizing your teenager still needs help with everyday personal care• Making your home more accessible and purchasing equipment that makes everyday life easier One of the biggest things I’ve learned is that you don’t necessarily figure everything out all at once. You learn as you go. You adapt. You problem-solve. You find what works for your family. And sometimes, you simply take it one day at a time. There are moments when I grieve the things I imagined my daughter’s life would look like, especially when I think about the independence that many 13-year-olds have. But there are also so many beautiful moments—the smiles, laughs, hugs, accomplishments, and little victories—that remind me why we continue to do everything we do. If you are a special needs mom, epilepsy mom, medical mom, or caregiver who is navigating life with a child who uses a wheelchair, I hope this episode reminds you that you are not alone. You don’t have to have everything figured out. Take it day by day, use the resources available to you, lean on parents who have walked this road before you, and find what works for your child and your family. And most importantly, don’t forget to appreciate the little things that make your child uniquely them. If this episode resonated with you, please share it with another parent who may need to hear it. And if you have a moment, please rate and review the podcast—it means so much to me and helps this podcast reach more moms and caregivers who need support. Follow along on Instagram: @parentingepilepsy_specialneeds #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis

  7. Sep 2

    Always on High Alert: The Exhaustion of Being a Hypervigilant Medical Mom

    When you’re the mom of a child with epilepsy, special needs, or complex medical needs, it can feel like you’re never truly able to turn your brain off. You’re constantly watching, checking, monitoring, planning, researching, anticipating, and preparing for what might happen next. For some of us, seizures have been part of our child’s life for years. We know that a seizure cluster can happen unexpectedly. We know that rescue medication might be needed. We know that sometimes plans change quickly and a trip to the ER can happen without warning. So how do you ever truly relax when your brain has learned that the next emergency could happen at any time? In this episode, I’m talking about hypervigilance and the exhaustion that comes from living in a constant state of “ON.” I share my own experience as a mom of a child with epilepsy and complex medical needs, including what it feels like to constantly anticipate the next seizure, medical appointment, procedure, or unexpected challenge. But this episode isn’t about telling you to stop being vigilant or to simply “stop worrying.” We know that being prepared and paying attention can be an important part of caring for a medically complex child. Instead, I want to talk about finding small moments where we can stand down. Moments where we aren’t researching. Moments where we aren’t checking. Moments where we aren’t anticipating the next problem. Moments where we can remind ourselves: “Right now, we are okay.” In this episode, I share 9 strategies I’m personally working on to help calm my nervous system, stay grounded in the present, and create small breaks from constantly scanning for what might go wrong. Why moms of medically complex children can feel like they are constantly on high alert The connection between uncertainty, fear, and hypervigilance Identifying your personal “always on” behaviors Creating small “stand-down moments” Why having an emergency plan can sometimes help quiet the brain Grounding yourself in what is happening right now instead of what might happen Giving your brain something else to focus on Learning to hand over responsibility to another caregiver Creating a “worry window” instead of immediately researching every concern Using breathing and bedtime meditation to help quiet a racing mind Why taking care of yourself doesn’t make you a less attentive or less devoted caregiver You can be vigilant when you need to be. You can have a plan. You can pay attention. And you can also give yourself permission to breathe. You don’t have to stand guard every second of every day. This isn’t about pretending that nothing difficult will happen. It’s about giving yourself permission to experience the moments of peace that exist between the difficult ones. Because you deserve to experience the good moments, too. Choose one of the strategies from this episode and try it this week. You don’t have to completely change the way you think or learn how to relax all day. Start with 10 minutes. Ten minutes where you don’t have to solve anything. Ten minutes where you aren’t researching. Ten minutes where you aren’t checking. Ten minutes where you simply allow yourself to be present. You may be surprised by how much even a small break can help. If this episode resonated with you, please share it with another mom or caregiver who may need the reminder that she isn’t alone. Connect with me: You can connect with me on Instagram: @parentingepilepsy_specialneeds And if you have a moment, please rate and review the podcast. Your reviews help this podcast reach other parents who may need to hear that they aren’t alone. Until next time, remember: You don’t have to stop being vigilant. You just need to give yourself permission to stand down sometimes. #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis

  8. Aug 26

    What Life Was Really Like After Our Daughter’s Hemispherectomy: The First 7 Weeks

    When I think back to the days and months following our daughter’s right hemispherectomy surgery, I want to give that woman, her husband and her kids HUGE hugs, because they did it. They survived what might have been the hardest period of their lives. But when you are in it, at least from my perspective as a mom, you don’t necessarily see it that way. You are focused on living minute by minute and day by day, simply trying to survive and get to the other side. You look for the wins. You celebrate every basic milestone. You pray through the challenging moments and keep moving forward. In this very vulnerable episode, I’m taking you back to our daughter’s hemispherectomy recovery in 2018 and sharing what those first seven weeks were really like. We knew she would be in the hospital for roughly one to two weeks after surgery because she would have a drain. After that, she would transfer to a local inpatient rehabilitation hospital, where she would spend another five to six weeks receiving intensive therapy. I stayed inpatient with her throughout that time. Being away from my husband and our other two daughters was incredibly difficult, but we knew how important this recovery period was going to be. There is so much that parents think about when considering a surgery as significant as a hemispherectomy. You think about the potential benefits, the risks, the recovery, and how this decision could change your child’s life and your entire family. Many parents seek multiple opinions and talk with other families before making this decision. We did, too.  And one thing I want to emphasize throughout this episode is that every child is different. Doctors can explain the medical facts, potential risks and possible outcomes based on your child’s condition, epilepsy and what they have seen with other patients. But there are so many parts of the day-to-day experience that they simply cannot predict. They aren’t living with your child day in and day out. They don’t see every little victory, every difficult moment or every unexpected challenge.  That’s where hearing from other parents can be so valuable. So, take a deep breath with me, because we’re going back. If you are a parent preparing for a hemispherectomy, recovering from one, or simply trying to understand what this journey can look like, I hope our experience reminds you that you are not alone. Please share this episode with another parent who may benefit from hearing it. And don’t forget to rate and review the podcast. It means the world to me and helps this show reach other parents who need this information and support. You can connect with me on Instagram at @parentingepilepsy_specialneeds and become part of a community that understands the ups and downs of parenting a child with epilepsy and special needs. If this episode spoke to your heart, share it with another parent who might need a reminder that they aren’t alone. Thank you for being here, and I’ll see you on the next episode. #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis

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About

As a mother and caregiver of a child with a complex medical background and special needs that all started as a result of epilepsy, I felt a calling to create a podcast that tells the story of our journey. A podcast that talks about moments of strength, the ups and downs and the lessons that we have learned along the way. Myself and my family have become stronger and are better humans because of what we've gone through. So come along with me, listen, learn and become apart of a community of parents, caregivers and families who understands what it's like to walk a day in your shoes.

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