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X-WR-CALDESC:Events for Pediatric Epilepsy Surgery Alliance
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DTSTART;TZID=America/New_York:20251022T080000
DTEND;TZID=America/New_York:20251022T090000
DTSTAMP:20260507T075634
CREATED:20260412T140336Z
LAST-MODIFIED:20260412T140409Z
UID:20374-1761120000-1761123600@epilepsysurgeryalliance.org
SUMMARY:Sharing the Sibling Experience: Insights from Adult Siblings
DESCRIPTION:  \n\nDrug-resistant epilepsy is relentless. It disrupts daily life\, creates uncertainty\, and impacts the whole family. Seizures can happen anytime\, bringing terrifying moments and constant stress. \nEven after surgery\, challenges often remain: medical side effects\, behavior struggles\, learning difficulties\, and endless appointments. Parents are consumed with managing it all\, and siblings often feel the impact in ways that aren’t consistently recognized. \nAs siblings grow up\, their roles can shift. Some step into caregiving or care management\, especially as parents age or pass away. These transitions bring new emotions\, responsibilities\, and decisions. \nIn this Power Hour\, Emily Holl\, Director of the Sibling Support Project\, will lead a candid conversation with three adult siblings who grew up in families shaped by drug-resistant epilepsy and epilepsy surgery: \n\nAn attorney whose sister had epilepsy surgery as a child\nA young adult reflecting on his brother’s hemispherectomy\nA pediatric neurologist whose brother lived with seizures and later died from SUDEP\n\nTogether\, they will share stories that reflect a saying often heard in our community: “Once a sib\, always a sib.” Even after loss\, the sibling bond continues to shape their lives. \nTopics include: \n\nGrowing up with the unpredictability of seizures\nThe emotional impact of emergencies and divided parental attention\nHow parents can support their other children while navigating epilepsy’s challenges\nThe evolving role of siblings in adulthood\, including caregiving and long-term planning\nHonest reflections on what helped\, and what they wish had been different\n\nThis video is for caregivers who want to better understand the sibling experience\, as well as teen and adult siblings seeking connection and validation. \nPlease note: This video will include a discussion of SUDEP (Sudden Unexpected Death in Epilepsy) and epilepsy related death. \n  \n 
URL:https://epilepsysurgeryalliance.org/event/sharing-the-sibling-experience-insights-from-adult-siblings-2/
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/jpeg:https://epilepsysurgeryalliance.org/wp-content/uploads/2025/10/skill-development-of-disabled-child-on-wheelchair-2025-01-08-02-39-20-utc-scaled.jpg
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231024T180000
DTEND;TZID=America/New_York:20231024T193000
DTSTAMP:20260507T075634
CREATED:20230906T005836Z
LAST-MODIFIED:20250109T010347Z
UID:18776-1698170400-1698175800@epilepsysurgeryalliance.org
SUMMARY:Talking with Your Kids About Sexuality
DESCRIPTION:Talking with our young and grown children about sexuality can be a difficult task. As parents and guardians\, we often worry whether talking about it gives permission\, and whether they can be safe from harm when they are in relationships. This workshop will help you become more comfortable discussing this topic by knowing what topics to cover when and the most effective ways to talk about this sensitive topic.\n\nExamine barriers to talking about sexuality.\nGain knowledge about sexuality and developmental disabilities.\nAcquire and practice skills in communicating about sexuality with our young and grown children.\n\n\nAbout our speaker\n\n\n\n\n\nElizabeth Solá\, M.A.\, has 25 years of extensive experience working with individuals with developmental and intellectual disabilities as a bilingual special educator\, working with individuals from infancy to adulthood and their families\, and currently as a self-direction broker to create inclusive opportunities and support self-determined individuals to live their best lives. As the parent of a young adult on the autism spectrum\, she also understands the importance of partnering with other parents to ‘start the conversation’ about healthy relationships and sexuality education from an early age. Elizabeth is on the advisory board and leads parent workshops in collaboration with Elevatus Training.\n\n\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\n\n \n\n\n\n\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  \n\n\n\n\nAbout Power Hour \nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nBy empowering yourself and your child\, you can better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step toward empowerment!
URL:https://epilepsysurgeryalliance.org/event/talking-with-your-kids-about-sexuality-a-workshop-for-parents-and-guardians/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/09/Sexuality-Training-event-Image-1200-x-630-1.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231017T120000
DTEND;TZID=America/New_York:20231017T130000
DTSTAMP:20260507T075634
CREATED:20230906T004651Z
LAST-MODIFIED:20250109T010522Z
UID:18774-1697544000-1697547600@epilepsysurgeryalliance.org
SUMMARY:Monitoring Progress on Your Child's IEP Goals
DESCRIPTION:Progress monitoring: What is it\, and why does it matter?\n\nProgress monitoring is how you and your child’s school know whether IEP goals are being met. You must understand if your child is making progress\, how progress is being measured\, how to ask for and look at data\, and what to do if your child fails to make progress. Join Julie Gardner\, Educational Specialist\, and Audrey Vernick\, PESA’s Director of Patient and Family Advocacy\, as we tackle these topics and answer your questions.\n\n\nThis is Part 2 of a two-part webinar series on IEP goal development and progress monitoring.\n\n\n\n\n\nAbout our speaker:\n \nJulie is an Educational Specialist at Kennedy Krieger Institute. She has a BA in Elementary Education and Specific Learning Disabilities (Flagler College) and an MA in Varying Exceptionalities (University of South Florida)\, and is currently in the EdD program at Slippery Rock University. Julie has over 30 years of experience in Special Education\, including the private and public sectors. She has worked as an administrator and IEP chair in public and private schools. She is also co-owner of J & A Educational Consulting\, which provides consultation and advocacy services to families involved in the general and special education system. \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\n\n\n\n\n\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  \n\n\n\n\nAbout Power Hour \nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nBy empowering yourself and your child\, you can better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step toward empowerment! \n\n 
URL:https://epilepsysurgeryalliance.org/event/monitoring-progress-on-your-childs-iep-goals/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/09/website-event-Image-1200-x-630.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231010T140000
DTEND;TZID=America/New_York:20231010T150000
DTSTAMP:20260507T075634
CREATED:20230906T003547Z
LAST-MODIFIED:20250109T010623Z
UID:18771-1696946400-1696950000@epilepsysurgeryalliance.org
SUMMARY:IEP Goals – What Can a Parent Do?
DESCRIPTION:Do you need help understanding your child’s IEP goals? What data can you ask for\, and how often? How can you be more involved in your child’s IEP development? Join Julie Gardner\, Educational Specialist\, and Audrey Vernick\, PESA’s Director of Patient and Family Advocacy\, to learn how to actively participate in IEP goal development\, know when your child’s goals have not been met\, and what to do about it!\n\n\n\nThis is Part 1 of a two-part webinar series on IEP goal development and progress monitoring.\n\n\n\n\nAbout our speaker:\n \nJulie is an Educational Specialist at Kennedy Krieger Institute. She has a BA in Elementary Education and Specific Learning Disabilities (Flagler College) and an MA in Varying Exceptionalities (University of South Florida)\, and is currently in the EdD program at Slippery Rock University. Julie has over 30 years of experience in Special Education\, including the private and public sectors. She has worked as an administrator and IEP chair in public and private schools. She is also co-owner of J & A Educational Consulting\, which provides consultation and advocacy services to families involved in the general and special education system. \n\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE: \n\n\n\n\n\n  \n\n\n\n\n\n\n\n\nPower Hour sessions are brought to you by our corporate sponsor UCB.\n\n\n\n\n  \n\n\n\n\nAbout Power Hour \nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nBy empowering yourself and your child\, you can better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step toward empowerment! \n\n 
URL:https://epilepsysurgeryalliance.org/event/iep-goals-what-can-a-parent-do/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/09/website-event-Image-1200-x-630.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230315T120000
DTEND;TZID=America/New_York:20230315T130000
DTSTAMP:20260507T075634
CREATED:20230214T011538Z
LAST-MODIFIED:20250109T012236Z
UID:18288-1678881600-1678885200@epilepsysurgeryalliance.org
SUMMARY:Getting Organized for the IEP Process
DESCRIPTION:Are you overwhelmed with trying to keep track of your child’s IEP documents\, progress on goals\, important links\, and other information? Join us for a Power Hour with some tips on Getting Organized! \nWith our Director of Patient and Family Advocacy\, Audrey Vernick \n\nAbout Power Hour\nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n…. and more!\n\nWe believe that by empowering yourself and your child\, you’ll be able to better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step toward empowerment! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/getting-organized-for-the-iep-process/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/02/Copy-of-Copy-of-Brain-101-700-×-400-px.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230307T120000
DTEND;TZID=America/New_York:20230307T130000
DTSTAMP:20260507T075634
CREATED:20230118T011532Z
LAST-MODIFIED:20250109T012334Z
UID:18151-1678190400-1678194000@epilepsysurgeryalliance.org
SUMMARY:Financial Planning 101
DESCRIPTION:The financial aspects of caring for a child or adult with special needs can be daunting. This workshop will provide you with an overview of what you need to do\, including:\n\n\nHow to address primary issues\nCreating a life care plan vision\nGuardianship and alternatives to guardianship\nIdentifying financial resources\nPreparing life care plan costs\nLegal instruments\nPreparing a letter of intent\nFamily meetings\nHow to review your life care plan annually\n\n\n\n\n\n\nAbout our speaker:\n\n\n\nMary McDirmid\, Special Needs Financial Planner\, Special Abilities Network \n \nWhen Mary isn’t helping families navigate the world of special needs financial planning\, she is a wife to Jay and a mom to Charlie and Ruth. In addition to her leadership role at Special Abilities Network\, she is a volunteer advocate for kids with rare diseases. She takes the title “Mom Boss’ seriously; just ask her! Mary understands the emotional and financial aspects of caring for a loved one with special needs because she is the parent of a child with a rare disease. Let her guide you toward making educated financial decisions for your unique family situation. \n\n\n\n\nAbout Power Hour\nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nWe believe that by empowering yourself and your child\, you’ll be able to better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step towards empowerment! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/financial-planning-101/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/Financial-planning-overview.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230228T130000
DTEND;TZID=America/New_York:20230228T140000
DTSTAMP:20260507T075634
CREATED:20230117T232119Z
LAST-MODIFIED:20250109T012538Z
UID:18140-1677589200-1677592800@epilepsysurgeryalliance.org
SUMMARY:Brain 101
DESCRIPTION:Join us for a parent-friendly introduction to the brain\, with a special focus on epilepsy surgery\, which will help you understand many of the terms and phrases used by neurologists and neurosurgeons.\n\n\n\n\n\n\nThe session will be presented by our founder\, Monika Jones\, JD. Although she does not have formal training in the field of neuroscience\, as part of her work with the Pediatric Epilepsy Surgery Alliance\, she has taken the initiative to educate herself on the brain. She has also published research in peer-reviewed medical journals and is the principal investigator of the Global Pediatric Epilepsy Surgery Registry. \n  \n  \n  \n \n\n\n\n\nAbout Power Hour\nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nWe believe that by empowering yourself and your child\, you’ll be able to better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step towards empowerment! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/power-hour-brain-101/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/brain-event.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230221T120000
DTEND;TZID=America/New_York:20230221T130000
DTSTAMP:20260507T075634
CREATED:20230117T233801Z
LAST-MODIFIED:20250109T035200Z
UID:18146-1676980800-1676984400@epilepsysurgeryalliance.org
SUMMARY:Empowering the Parent's Voice in the IEP Process
DESCRIPTION:Empowering the Parent’s Voice in the IEP Process\nIt can be frustrating when parents try to advocate for their children and the school team denies their request. What do you say when the school refuses to provide an assessment in an area of suspected disability? What can you say if you believe your child needs more services than they receive\, but the school refuses? How do you answer the school team when they say your request is based on a “medical” model and not an “educational” one? This session will help you with terminology you can use during the meeting to help you help your child. \n\n\n  \n\nAbout our speaker:\nJulie Gardner\, Educational Specialist\, Kennedy Krieger Institute \n \n\n  \n  \n  \n  \n  \n  \n  \n  \nJulie is an Educational Specialist at Kennedy Krieger Institute.  She has a BA in Elementary Education and Specific Learning Disabilities (Flagler College) and an MA in Varying Exceptionalities (University of South Florida)\, and is currently in the EdD program at Slippery Rock University. Julie has over 30 years of experience in Special Education\, including the private and public sectors. She has worked as an administrator and IEP chair in public and private schools. She is also co-owner of J & A Educational Consulting\, which provides consultation and advocacy services to families involved in the general and special education system. \n\n\nAbout Power Hour\nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nWe believe that by empowering yourself and your child\, you’ll be able to better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step towards empowerment! \n\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/empowering-the-parents-voice-in-the-iep-process/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/Empowering-the-Parents-Voice-in-the-IEP-Process.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230216T130000
DTEND;TZID=America/New_York:20230216T140000
DTSTAMP:20260507T075634
CREATED:20230117T232312Z
LAST-MODIFIED:20250109T035348Z
UID:18143-1676552400-1676556000@epilepsysurgeryalliance.org
SUMMARY:Anatomy of an IEP
DESCRIPTION:Join our Director of Patient and Family Advocacy\, Audrey Vernick\, for The Anatomy of an IEP\nIn this session\, Audrey will dissect an IEP and show you how to include parent input into each part of the IEP to help ensure that your child receives an appropriate education. Print out a copy of your child’s IEP to take notes on that document as we go through the presentation.\n\n\n\n\n\n\n\n\n\n\n\nAbout Power Hour\nWe understand that being a parent of a child who is anywhere on the epilepsy surgery journey can be challenging and overwhelming at times. That’s why we’ve created our Power Hour workshops – to provide you with the tools and knowledge you need to empower yourself and your child. \nThese workshops are designed to be non-intimidating and easy to understand. We use real-life examples to make sure you can easily follow along and apply what you learn. \nDuring the workshops\, we’ll cover a variety of topics\, including: \n\nUnderstanding your child’s needs and the impact it may have on their development;\nNavigating the educational system and finding the right resources for your child;\nBuilding a support system for yourself and your family;\nSelf-care and stress management for parents of children with disabilities\n\n…. and more! \nWe believe that by empowering yourself and your child\, you’ll be able to better advocate for their needs and create a more positive and fulfilling life for both of you. \nPower Hour workshops are held online and can be attended from the comfort of your own home. They are open to all parents and primary caregivers of children anywhere on the epilepsy surgery journey. We hope you’ll join us for these valuable and informative workshops. Sign up today and take the first step towards empowerment! \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/power-hour-anatomy-of-an-iep/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2023/01/IEP.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221117T200000
DTEND;TZID=America/New_York:20221117T210000
DTSTAMP:20260507T075634
CREATED:20221012T164610Z
LAST-MODIFIED:20250109T035903Z
UID:17884-1668715200-1668718800@epilepsysurgeryalliance.org
SUMMARY:Coping Strategies
DESCRIPTION:Each one of us is human. Part of being human is having strong emotional reactions to a parenting experience that is continuously stressful and not what we’d imagined it would be. Understanding what is underneath our emotional experience and what is happening within us at a biological and emotional level when this occurs can help us respond more compassionately towards ourselves and our children. \nIn this Power Hour\, we will touch on coping skills that can help us thrive (vs simply survive) in this unique parenting experience\, including how to manage the inevitable impact on sibling relationships and the relationship between two parents when caring for a child with extraordinary needs. We will touch on what neuroscience research tells us about the importance of nervous system health and resiliency so that we can engage in meaningful activities that truly impact well-being. \n\nAbout Eileen Devine\, LCSW:\n\nEileen has over a dozen years of clinical experience and is the adoptive mother of a child with fetal alcohol syndrome. She believes that kids do well if they can and that when we understand the way a child’s brain works\, we then understand the meaning behind challenging behaviors. Eileen’s goal is to not only support parents in feeling more competent and confident in connecting with their child by parenting from a brain-based perspective\, but to also recognize their experience as the parent of a child with challenging behavioral symptoms and the impact this has on their sense of self and well-being. When these two sides of the neurobehavioral coin can be equally addressed\, there is less frustration and increased hope in this unique parenting journey. \nEileen has her License in Clinical Social Work and is a certified facilitator in the teaching and application of the neurobehavioral model\, as developed by FASCETS founder\, Diane Malbin.  She has also completed Tier 1 training in Think:Kids Collaborative Problem Solving. Eileen is an instructor for the Post-Master’s Certificate in Adoption and Foster Therapy through Portland State University’s Child Welfare Partnership\, training other therapists on the neurobehavioral model. \nFounder of the Brain First Parenting Program and The Resilience Room \nTune in! Brain First Parenting Podcast Mini-Series\n\n\n\n\nEileen Devine\, LCSW \n\n\n\n\nWhat is Power Hour? \nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with your questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery. \n\nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/coping-strategies/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/coping-strategies-events.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221109T120000
DTEND;TZID=America/New_York:20221109T130000
DTSTAMP:20260507T075634
CREATED:20221012T164126Z
LAST-MODIFIED:20250109T040034Z
UID:17868-1667995200-1667998800@epilepsysurgeryalliance.org
SUMMARY:Parent Perspective – Hemispherectomy for Rasmussen's Encephalitis
DESCRIPTION:How do they do it? How do other parents manage the many challenges after their child has epilepsy surgery?  Do you wish you had a “blueprint” of ideas and tools others have found effective? \nOur guest speaker\, Emily Marino (physical therapist and parent to Giulia\, who had a hemispherectomy)\, will share her daughter’s journey and what they have found to work (and what didn’t) after hemispherectomy surgery for Rasmussen’s Encephalitis \nEmily will discuss what they have done to address her needs in physical therapy\, occupational therapy\, speech and communication\, hearing\, vision\, assistive technology\, executive function\, and social skills. Her plan has empowered Giulia in the best way possible for a successful future. \nOther parents will share their experiences with different epilepsy surgeries in future Parent Perspectives. \n\n  \n\n  \n  \nWhat is Power Hour? \nPower Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with your questions about education\, transition to adulthood\, connecting to financial or medical resources\, housing options\, epilepsy surgery\, dealing with postoperative hydrocephalus or shunt issues\, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy. \nTHIS EVENT HAS OCCURRED. YOU CAN WATCH THE RECORDED WEBINAR HERE:
URL:https://epilepsysurgeryalliance.org/event/parent-perspective-hemispherectomy-for-rasmussens-encephalitis/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/Emily-Giulia-event-image.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220927T190000
DTEND;TZID=America/New_York:20220927T200000
DTSTAMP:20260507T075634
CREATED:20221012T163100Z
LAST-MODIFIED:20230316T041633Z
UID:17874-1664305200-1664308800@epilepsysurgeryalliance.org
SUMMARY:School-Based Audiology Assessments and Interventions After Epilepsy Surgery
DESCRIPTION:Often\, parents express concern about their child’s ability to learn. They may struggle with attention or behavior issues in the classroom setting. It’s important to consider the impacts of a central auditory processing disorder for a child after a temporal lobectomy\, hemispherectomy/hemispherotomy\, TPO (temporal-parietal-occipital lobectomy)\, or a corpus callosotomy. \nEven if your child has received a proper audiological evaluation and a diagnosis of a central auditory processing disorder\, sometimes the school doesn’t know how to best support the child. \nPlease join us for a special Power Hour with Clinical and Educational Audiologist Amanda Levy\, Au.D.\, and Daphne Magdaleno\, parent to a child with a hemispherectomy\, to discuss school-based audiology assessments and interventions. \nDr. Levy will discuss functional listening evaluations and acoustical evaluations of the classroom. Both presenters will discuss what parents can do to help educate and encourage your school’s audiologist to learn more about their child’s epilepsy surgery and its impacts. This session will be moderated by our Director of Patient and Family Advocacy\, Audrey Vernick. \nThis session is NOT an overview of central auditory processing disorder after epilepsy surgery. \nPlease review our previous content on this topic to be prepared for this session: \n\nAn Introduction To Cortical Auditory Impairment After Hemispherectomy\, TPO\, or Temporal Lobectomy\nStrategies for Cortical Auditory Impairment After Hemispherectomy\nWhat do I need to know about Central Auditory Processing Disorder?\n\nPresentations from our Pediatric Epilepsy Surgery Conferences: \n\n\n\nHearing After Hemispherectomy (Dr. Frank Musiek\, 2016)\nHow the Brain Hears (Dr. Frank Musiek\, 2019)\n\n\n\n\n\n\n\nPresentation slides\n\n\n\n\n\nAdditional resources:\n\n\n\nThe International Guild of Auditory Processing Specialists (IGAPS) has a directory of professionals who assess and treat auditory processing disorders.\nClassroom Acoustics (The American Speech and Hearing Association/ASHA)\nThe difference between auditory processing disorder and ADHD (Understood.com)\nDichotic listening after cerebral hemispherectomy: methodological and theoretical observations (de Bode 2007)\nChanges in Central Auditory Processing Following Temporal Lobectomies in Children (Cranford 1996)\n\n\n 
URL:https://epilepsysurgeryalliance.org/event/school-based-audiology-assessments-and-interventions-after-epilepsy-surgery/
LOCATION:Virtual Workshop
CATEGORIES:Past events,Power Hour
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/10/audiology-PH-event-image.png
ORGANIZER;CN="Pediatric Epilepsy Surgery Alliance":MAILTO:info@epilepsysurgeryalliance.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220428T190000
DTEND;TZID=America/New_York:20220428T200000
DTSTAMP:20260507T075634
CREATED:20220417T111002Z
LAST-MODIFIED:20230315T181521Z
UID:17269-1651172400-1651176000@epilepsysurgeryalliance.org
SUMMARY:AAC and Literacy After Epilepsy Surgery
DESCRIPTION:Some children in our community use augmentative and alternative communication (AAC) devices to communicate with others. Many parents wonder if proper reading instruction is part of their education. \n\n \n\nDoes your team know how to measure your child’s progress using AAC?\nDoes your team know how to support and model AAC use for your child throughout the day?\nHow does your child demonstrate knowledge and communicate during shared reading\, writing\, and word study?\nIs your team trained to use AAC?\nIs AAC used in other learning parts of the day?\n\n\n\nPlease join us as Dr. Stephanie Spadorcia helps us untangle some of these questions and more. \nStephanie Spadorcia\, Ph.D. is Associate Dean of the Graduate School of Education\, Associate Professor of Literacy and Special Education\, and Director of the Teacher Residency Programs at Lesley University in Cambridge\, MA.  She teaches courses in assessment\, instructional methods for reading and writing\, technology integration\, and literacy instruction for children with disabilities. She has worked with teachers on literacy and assessment initiatives in schools in New England and across the country. To learn more about Dr. Spadorcia\, go to https://www.stephaniespadorciaconsulting.com. \nDr. Stephanie Spadorcia \nWhat we discussed: \n\nWhat are literacy and communication?\nWhat is the difference between AT (assistive technology) and AAC (augmentative and alternative communication (AAC)?\nWhat is the emergent literacy model?\nWhat should reading instruction include?\nIs there dedicated instructional time in your child’s day\, every day\, for reading\, writing\, listening\, and communicating?\nAre there IEP goals that address all four of these areas?\nIs AAC use interwoven throughout the day in all four of these areas?\nHow do you teach a nonverbal or minimally verbal child to read?\nWhat about assessment or measuring progress?\n\nEssential Components of Daily Literacy Instruction: \n\nWord work\nComprehension\nWriting\nIndependent reading time\n\nDr. Spadorcia recommended 90-120 minutes of literacy instruction PER DAY in a child’s schedule that includes these 4 components. These minutes can be spread throughout the day. \nSuggested Assessment Tools: \n\nDevelopmental Writing Scale\n\nThe Developmental Writing Scale: A New Progress Monitoring Tool for Beginning Writers (Sturm 2012)\nThe Power of the Developmental Writing Scale (video)\nEffective Writing Instruction for Students with Developmental Disabilities: Curriculum\, Measurement\, and Accommodations\nUsing the Developmental Writing Scale for Writing Assessment | Jane Farrall Consulting\nWhat can assessment look like? (Alternative Pencils)\n\n\nMaze activity\n\nOn Progress Monitoring\, Maze Tests\, and Reading Comprehension Assessment (Reading Rockets)\n\n\nCloze activity\n\nUtilizing a Cloze Activity to Promote Decoding | Literacy for Students with Cognitive Disabilities\nDeveloping Fluent Readers (Reading Rockets)\n\n\nDevelopmental Spelling Test\n\nAssess the Child\, Find the Phase J. Richard Gentry – PDF Free Download\nDevelopmental Spelling Test – Teaching All Learners (Boston Public Schools)\nThe Gentry Developmental Spelling Test\nDeveloping a Written Productivity Profile: Conducting a Developmental Spelling Analysis (Montgomery Schools\, MD)\n\n\nInformal Reading Inventory\n\nInformal Reading Inventory (Qualitative Reading Inventory) (Reading Rockets)\nA Critical Analysis of Eight Informal Reading Inventories (Reading Rockets)\n\n\nWord identification assessment (Literacy Instruction for Individuals with Autism\, Cerebral Palsy\, Down Syndrome\, and Other Disabilities\, Penn State\, Janice Light & David McNaughton)\n\nResources Shared by Dr. Spadorcia: \n\nAAC Intervention (Caroline Musselwhite)\nAlternative Pencils | Center for Literacy and Disability Studies\nCenter for Literacy and Disability Studies\nEmergent Literacy model:\n\nTeale\, W.\, Sulzby\, E. Emergent Literacy: Writing and Reading. 1986 Norwood\, NJ: Ablex\nEmergent literacy (The Edmonton Regional Learning Consortium/ERLC)\nEmergent Literacy (Emilia Ferreiro\, The StateUniversity.com Education Encyclopedia)\n\n\nLiteracy and Disabilities – Stephanie Spadorcia Consulting\nMayer-Johnson PCS for Clicker : Spectronics – Inclusive Learning Technologies\nProloquo2Go – AAC app with symbols\nWhat are some types of assistive devices and how are they used? | NICHD\nRick Creech\, speech therapist and AAC specialist who was born with cerebral palsy. See also Reflections from a Unicorn (Creech 1992)
URL:https://epilepsysurgeryalliance.org/event/aac-and-literacy/
LOCATION:Virtual Workshop
CATEGORIES:Past events
ATTACH;FMTTYPE=image/png:https://epilepsysurgeryalliance.org/wp-content/uploads/2022/04/Copy-of-AAC.png
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