Strong & Rare Parenting

Understanding the Theory of Grief and Loss Grief is a universal human experience that we all encounter in various forms throughout our lives. Whether it's the loss of a loved one, a job, a relationship, or even a sense of normalcy, the emotions we navigate are complex and unique to each individual. Learning about the Theory of Grief and Loss has been eye-opening for me. Elisabeth Kübler-Ross's stages – Denial, Anger, Bargaining, Depression, and Acceptance – provide a framework to comprehend the roller coaster of emotions we undergo. It's a reminder that healing isn't linear; it's a journey with twists and turns. Embracing these stages can help us validate our feelings and find resilience in the face of adversity. Remember, it's okay to mourn, to feel, and to take the time we need. Let's support each other through these stages and offer kindness to ourselves and others who are navigating grief. Let's open up the conversation about grief and loss. Share your thoughts and experiences in the comments below. Together, we can create a space of understanding and compassion. To stay connected, visit me on Instagram (@Strongandrareparenting) and/or email me at media@strongeandrareparents.com Thank you for supporting Strong & Rare Parenting --- Support this podcast: https://podcasters.spotify.com/pod/show/strongandrareparenting/support

Featuring Jeanette Perez, AMFT & APCC. She is a mama, wife, and Behavioral Health Counselor. She had an educational background in clinical psychology from San Jose State University. A wealth of experience working with multiple non-profits, school districts, and ABA therapy with kids on the autism spectrum for in-home services. She is passionate about helping her local community improve their mental health and support families with special needs. Show highlights:  Navigating Parenting Autism Misconceptions Parenting & impact of Intragenerational Traumas To stay connected, visit me on Instagram (@Strongandrareparenting) and/or email me at medi @strongeandrareparents.com Thank you for supporting Strong & Rare Parenting --- Support this podcast: https://podcasters.spotify.com/pod/show/strongandrareparenting/support

On this episode, we Celebrate Rare Disease Day!  Rare Disease Day® takes place on the last day of February each year. It is international awareness day. This day aims to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally.  Show notes:  Information about Rare Diseases  Challenges caring for and being a patient of rare disease  Rare Disease Organizations  Mental health  Call to Action  To stay connected, visit me on Instagram (@Strongandrareparenting) and/or email me at media@strongandrareparents.com --- Support this podcast: https://podcasters.spotify.com/pod/show/strongandrareparenting/support

Happy New Year 2023! We are kicking of our year with our Rare Disease Day Celebration. This episode highlights our re-launch for 2023 and topics on a new episode coming soon all about Rare Disease Day. --- Support this podcast: https://podcasters.spotify.com/pod/show/strongandrareparenting/support

Feauturing Cristina Rosa Vargas, Strong & Rare Mama, Paralegal, and Award winner of the Sonofi 2022 torch awards. She has been featured in Rare Revolution magazine and had a pending article with Upstate medical. She is a mama into civic action as she spreads awareness of CLN2 disease. She is working on a petition to support FDA-approved medication for her son's diagnosis. As she continues to be a strong RDLA advocate she is striving to become a lawyer to support the Rare Disease Community. Show highlights: Her Son's Journey with CLN2 and how she took steps to be a voice for her son and many other families Her impact award recognition and her dedication to continuing advocating Purpose in life as a parent and professional Learn more about the work Cristina is doing by visiting the following links Link to live Sanofi watch party: Youtube Video, Link to campaign: Here, Link to FDA citizen petition docket, Featured on Rare Revolution magazine To stay connected, visit me on Instagram (@Strongandrareparenting), and/or send me an email at info. strongeandrareparents.com Support this Podcast: https://anchor.fm/strongandrareparentin --- Support this podcast: https://anchor.fm/strongandrareparenting/support

Dr. Ann Marie is the founder and president of I'MPOWER Education Services LLC, an education service that focuses on bridging the gap between parents and schools. She created CORE In-Home Tutoring to service K-12 students in the core subjects. She has worked as a teacher and administrator in K-12 public and private schools. Dr. Ann Marie worked as an educational specialist for the MA Department of Education. She is an expert in providing training in fostering social-emotional competencies in classroom learning; SPED parents and the IEP (individual education process); preparing your child for formal school; social-emotional learning in the classroom; social-emotional competencies and behavior. She strongly believes that parents are a key element in students experiencing the highest level of academic success within the educational system. Strongly committed to a vision of excellence for students with socio-emotional and academic needs in diverse school communities. Show Highlights: Parenting Power, Demystifying the IEP, Knowing your parent's rights. Social Media account to connect with Dr. Johns @impowereducation To stay connected, visit me on Instagram (@Strongandrareparenting), and/or send me an email at info. strongeandrareparents.com Support this Podcast: https://anchor.fm/strongandrareparentin --- Support this podcast: https://anchor.fm/strongandrareparenting/support

Michelle Wynter is a happily married wife, proud Autism mom, and licensed Realtor in PA. She is raising her first and only child, Maverick, with her husband. In 2020 Maverick was diagnosed with Autism. For the Wynter family, this journey has been one of their most challenging and joyful journeys. Listen to their story as she shares their journey of early intervention, co-parenting, and letting go of expectations. Connect with the Whynter Family on Instagram @three_wynters & if you are in PA and would like support with any Realstate, make sure to message Michelle for help.  To stay connected, visit me on Instagram (@Strongandrareparenting) and/or send me an email at media. strongeandrareparents.com . Support this Podcast: https://anchor.fm/strongandrareparentin --- Support this podcast: https://anchor.fm/strongandrareparenting/support

This episode #09 S&R features the Chamlee Family. Heather shared her family's Autism Journey, challenges, wins, and new business. Heather Chamlee and her husband and I live in the Southern California desert, raising 3 amazing neurodiverse children, running our own businesses & navigating the world of special needs parenting together! Our oldest, Ranger (7) is autistic and limitedly verbal, learning to communicate with an AAC device. He LOVES being outside in the elements and is fiercely independent & purely magical. Ryder (6) is also autistic and hyperverbal, using lots of echolalia and scripting to communicate. He LOVES to learn about EVERYTHING, is the best snuggler & so funny! Both boys are daring sensory seekers! Hayley (4) has some sensory sensitivities & speech issues that are currently being evaluated. She LOVES taking care of her stuffed babies (animals), playing with EVERYONE & is smart & sassy enough to take over the world one day if she wants! I am a proud mom & wife, and also a photographer, a cookie baker, a date night box creator & a kinda crunchy self-care enthusiast! She started a company making at-home date night boxes for special needs parents. It's a project that is SO near and dear to her heart. Visit her Business page at https://morethanjustcaregivers.com/ To stay connected, visit me on Instagram (@Strongandrareparenting), and/or send me an email at info. strongeandrareparents.com. Support this Podcast: https://anchor.fm/strongandrareparentin --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/strongandrareparenting/support

In this episode David shares his story on his ultra-rare condition called Occipital Horn Syndrome – he was diagnosed with this at the age of 26 at Addenbrookes in Cambridge. He has been doing talks on rare diseases life for the last 8 years at various events and conferences globally. Covering many different areas, such as the science behind Occipital Horn Syndrome, what it's like to go through all the education milestones when managing a complicated ultra-rare disease, how he has navigated employment with a rare disease; the diagnosis journey, and much more! For the last 4 years, David has been working for Rare Revolution Magazine - a magazine focusing on rare diseases in the UK. Through his role in also Business Development – he has met so many fantastic rare disease advocates and industry professionals from all over the globe. Alongside his work at the magazine and speaking, David volunteers for a cause close to his heart - Great Ormond Street Hospital. A famous pediatric hospital in London. David also joined Mitrofanoff Support last year as one of the trustees. David has been using a Mitrofanoff catheter since the age of 7, back in 1995, which was carried out by Great Ormond Street Hospital in London. We dive into his journey, what it was like for his parents and his independence in taking ownership of his medical condition, and the importance of taking risks despite the challenges he faced to live life to the fullest. To connect with David, visit his IG page David (@occipitalhornadvocate).To stay connected, visit me on Instagram (@Strongandrareparenting), and/or send me an email at info. strongeandrareparents.com --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/strongandrareparenting/support

In this episode #07, Raelene Rodriguez is a stay-at-home-medical-mama who cares for her 1st and only child, Norah Rae Rodriguez. Guided by faith and her husband, Ray Rodriguez, they continue to learn and navigate through Norah's diagnosis: Chromosome 13 deletion/ring, epilepsy, club foot, NG tube feeding, hypotonia, bilateral hearing loss, vascular ring, and coloboma of the optic nerve. Leaving her project management profession to be a full-time caregiver, she shares how faith has strengthened her to continue to seek joy, pray for wisdom, and offload the anxiety that comes with 13q. Show notes: Sharing her strong and rare mama journey with Baby Norah, daily routine, self-care/mental health, finding time to keep a strong marriage, message to other parents going through similar journeys, how does she keep faith and hope alive? To follow Norah Rae's journey visit her IG page: @Norah_rae_13. To stay connected, subscribe here and visit me on Instagram@Strongandrareparenting, and/or send me an email at info. strongeandrareparents.com --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/strongandrareparenting/support

Welcome to Part II of Episode#04. Follow your momma's gut! In this episode, Bertha Guillen shared her journey of ABA with Santhi, shared her personal views on the controversies of ABA, what ABA has done for Santhi to support him, and one crucial factor that changed the trajectory of their life. This change was through self-advocating in her workplace to request ABA self-funded employer health plans. What is incredible is not only did she help Santhi but she was also an agent of change in the workplace for the rest of the employer group who also needed ABA service options in their medical health plans. For more information, visit Self-Funded Health Benefit Plans | Autism Speaks (not a paid partnership). To stay connected, visit me on Instagram (@Strongandrareparenting) and/or send me an email at info. strongeandrareparents.com. Support this Podcast: https://anchor.fm/strongandrareparentin --- Support this podcast: https://anchor.fm/strongandrareparenting/support

Proud Strong and Rare Mama to three beautiful children, writer, advocate for a rare disease community on a mission to raise awareness, spread hope, and build a community together on chromosome condition called Koolen De Vries Syndrome (KVS). Becky shares her experience of being diagnosed with the rare condition, KVS, after her oldest son and now youngest daughter was diagnosed with the same condition. Becky has created a Facebook page called Mamas Heart and UK KDVS support group. As a writer she has been published in Beacon for Rare Diseases, Koolen-de Vries Syndrome Foundation, Eurodis - European Rare Diseases Organisation, and most recently on RARE Revolution Magazine. To check out her publications here are the direct links, Beacon for Rare Diseases: Becky's Journey, KDVS Foundation: Momas Heart, RARE Revolution Magazine Let's connect and stay in conversation

Welcome to Episode #04 Strong and Rare parenting Podcast with host Victoria. Feature guest Bertha Guillen. She is a Strong and Rare Mom, ASD and Epilepsy Advocate. In this episode you will hear her inspiring story of strength, courage and resilience. Episode #04 Notes: Bertha and Sati's Story Journey through Santi's early diagnosis Importance of Nutrition with Special Needs Acceptance of the diagnosis Late diagnosis in underrepresented communities Message to all parents going through the early stage of ASD Let's connect and stay in conversation --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/strongandrareparenting/support

Welcome to the 3rd episode of the Strong and Rare parenting Podcast. Featuring guest Sonia Daclan, ASD mom, Advocate, and Founder of Special Needs Sports Organization for Kids. Episode #03 Notes Sonia's and Isaiah's story Parent involvement in school IEP challenges, experience, and outcomes Building community through sports Having a plan to support children when they experience a meltdown Surfershealing provides a space for inclusion link to Instagram “Stay committed, Never permit them to quit” - Sonia Daclan Powerful words of wisdom from Sonia to all moms Connect with Sonia Daclan on Facebook: HERE ------------------------------------------------------------------------------------- Let's Connect and stay in the conversation. I'd love to hear your reaction and feedback on this and future episodes To stay connected, visit me on Instagram ( @Strongandrareparenting), and/or send me an email at info.strongandrareparents.com Support this podcast: https://anchor.fm/strongandrareparenting --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/strongandrareparenting/support

Welcome to the 2nd episode of the Strong and Rare parenting Podcast. This episode is all about speech and language with field expert Cynthia Meza, M.A. CCC-SLP  Episode Notes:  Cynthia's Story and background on Speech and Language  What brings her joy to the practice? Misconceptions about Speech and language What is Augmentative and Alternative Communication (AAC)?  Why is Early intervention so critical? Recommendations for Parents  What is on the horizon with BlossomingVoices? Connect with Cynthia Meza, M.A. CCC-SLP Founder/CEO of BlossomingVoices Email:Cynthiameza@blossomingvoices.com Instagram: @blossomingvoicesspeech  Let's connect and stay in conversation

Welcome to the first official Strong and Rare parenting Podcast! In this episode, I share my background as a strong and rare momma and my reason for creating this community. You will hear about my mission to empower other special needs parents and how we can continue to spread awareness, acceptance, and knowledge on all things neurodiversity and rare diseases. My hope for this episode is that you leave inspired to share your own story with others. Let's connect and stay in conversation

Calling all Strong and Rare parents raising children with Autism, ADHD and Rare diseases. My name is Victoria, I am a momma raising two incredible little humans on a mission to support all S&R parents and to spread awareness and acceptance for our community. On this podcast you will get to hear stories and hear from experts in the field. --- Support this podcast: https://anchor.fm/strongandrareparenting/support