Embracing Holland

A podcast about traveling the special needs road and discovering the hidden gems and unique finds of a place you didn't think you would be. We share how families are doing amazing things as a result of a diagnosis, and give you a glimpse into the realities of raising children with differing needs.

A Postcard From Holland 03/08/2024

A Postcard From Holland We are still here, and we have both missed you all. /episode/index/show/embracingholland/id/30229813

Finding Hope in the Desert with Christina Adams 01/11/2023

Finding Hope in the Desert with Christina Adams Christina Adams, journalist, writer, disability advocate, and camel milk investigator, shares with us her powerful early intervention story of her son with autism and how she was able to help him through diet and camels. She outlines what she calls her “crazy camel journey” and how her research and travels to Isreal took her to a place of healing. She shares her website with us as a resource that details how camel’s milk can help several conditions, from allergies and gut issues to neurodevelopmental issues. Join us as we learn about the amazing qualities of camels and how their milk can be a part of your healing journey! /episode/index/show/embracingholland/id/25571736

A Cure for Austin with Hannah Lowe 09/11/2022

A Cure for Austin with Hannah Lowe Join us as we talk to Hannah Lowe, founder of the L-CMD Foundation and mother to Austin, who has LMNA-related congenital muscular dystrophy. Like many rare disease families we've talked to, her son's condition was caused by a random genetic mutation. There is no treatment or cure, and given how rare it is, they are unsure about his prognosis or life expectancy, making the mission even more urgent. The L-CMD Foundation she started inspires hope for a stronger tomorrow by seeking treatments and, ultimately, a cure. We talk about balancing grief with action, and Hannah exemplifies this in her graceful and determined approach to saving her son. /episode/index/show/embracingholland/id/24339681

Hard Landings with Cammie McGovern 07/24/2022

Hard Landings with Cammie McGovern If you’ve ever worried about what adulthood might look like after high school or you’ve ever been inspired to create a meaningful space for your child to spend adulthood, tune in to our interview with critically acclaimed author, Cammie McGovern. Cammie McGovern was awarded a creative writing fellowship at Stanford University, and has received numerous prizes for her short fiction. Her stories have appeared in many magazines including Glamour, Ladies Home Journal, Redbook and Seventeen , and she is the author of another novel, The Art of Seeing. She lives in Amherst, Massachusetts with her husband and three children, the eldest of whom is autistic. She is one of the founders of Whole Children, a resource center that runs after-school classes and programs for children with special needs. /episode/index/show/embracingholland/id/23839604

Enjoying Your Child with Leylani Cardoso 05/16/2022

Enjoying Your Child with Leylani Cardoso This week we chat with Leylani Cardoso, warrior parent, and mother of Sophia, her daughter with Down Syndrome. Leylani and her family helped Sophia bring her passion for food and entertaining to life by creating the YouTube Channel /episode/index/show/embracingholland/id/23119592

Embracing Autism with Lia McCabe 03/08/2022

Embracing Autism with Lia McCabe For this episode, we share with you another Maryland parent and fellow autism mom, Lia McCabe, who started AutismWish.org which seeks to fulfill the wish lists of families across the country without all of the red tape of government programs. She and her husband also host a podcast called Embracing Autism, which is child focus and helps parents to understand and embrace their neurodiverse children. Give it a listen, follow, and subscribe to support their mission of helping families in the face of fear and the unknown. We talk about: Neurodivergent parenting Empathizing with sensory needs The formation of Autism Wish and the Embracing Autism Podcast Accepting behaviors that are harmless How IQ testing is not designed for children who are non-verbal Maintaining a positive perspective Growing to understand that a diagnosis doesn't mean future dreams are gone Lia’s website Lia’s Recommended Books Other books mentioned /episode/index/show/embracingholland/id/22384829

Caring for the Caregiver with Rory Lawrence 02/09/2022

Caring for the Caregiver with Rory Lawrence This episode is all about taking care of the caregiver. Rory Lawrence, mother of a child with complex medical needs and staff member with David’s Refuge, talks with us about the organization she works for that pours into parents turned caregivers, and how she and her husband have found meaningful respite. We also talk about practical ways to weave in self-care that don’t require a sitter but can actually make a difference. Links Rory’s Email - /episode/index/show/embracingholland/id/22072046

A Few of Our Favorite Things Year 2 12/15/2021

A Few of Our Favorite Things Year 2 Despite ending the year on a turbulent note for our families, we are ending season two of the podcast with our awesome finds that brought us joy this year! We share with you gift ideas, sanity savers and problem solvers that we hope will bring a little joy and make your life a tad easier. /episode/index/show/embracingholland/id/21497435

Circling the Drain: A Postcard from a Darkened Alley in Holland 11/12/2021

Circling the Drain: A Postcard from a Darkened Alley in Holland Have you ever seen the meme about a special needs parent who fell in a hole? Well, that's where Meg and I find ourselves. When we started this podcast journey our mission was to highlight families with disabilities doing innovative things but to also share the reality of the ups and downs of raising children with disabilities, so this episode is a life update and a peek into where we are in the metaphorical Holland. We hope this brings someone some comfort who may also be in a hole. /episode/index/show/embracingholland/id/21145205

Smearing 102: From Devastation to Innovation 09/22/2021

Smearing 102: From Devastation to Innovation We continued our chat about smearing with our guest, Jennifer Sheppard, who created an adaptive clothing line out of a dire need for an alternative to wet suits for her own son who struggles with the behavior. We also shared a bit more of our chat with Genevieve, and our own lessons learned from dealing with poo. We talk about: How we've become desensitized What we've found to be helpful in the aftermath Ways to clean up the mess Specific products and strategies that have been helpful Finding adaptive clothing solutions for when you can’t watch your child 24/7 Jennifer’s Adaptive Clothing Line - The Wild End of the Spectrum FB page - Products We Reference (not sponsored or affiliate links, just products we’ve purchased and found helpful) Book /episode/index/show/embracingholland/id/20557490

Smearing 101: What to do about Poo 08/11/2021

Smearing 101: What to do about Poo Fecal smearing and ingesting are taboo topics that often elicit a considerable amount of shame for families. We felt like it was time to give this topic some attention to those who are struggling in the dark and aren't comfortable reaching out for suggestions in the online support groups. In response to very little information openly available to families struggling with smearing and consuming feces (scatolia and coprophagia), Genevieve Engleman, The Remote OT, shares with us the background behind the behavior, information to reduce the stigma, and ways we can try to prevent and address this issue. We talk about: Why mammals may consume their own feces History and incidence of these behaviors Reducing the stigma and shame associated What the behavior may be communicating How to address any potential medical problems that could lead to these behaviors What do do if and when it happens Ways to use OT, and sensory play to meet the needs currently served by poop play Genevieve’s Website /episode/index/show/embracingholland/id/20195390

Creating a Game Plan with Joya Van Der Laan 07/06/2021

Creating a Game Plan with Joya Van Der Laan This week we chat with Joya Van Der Laan, a functional medicine family nurse practitioner whose curiosity and her own daughter’s autism diagnosis lead her down the biomedical path. We learn how she has used her personal and professional experience to create videos to teach parents how to create their own autism game plan, focused on helping parents address common symptoms and challenges associated with an autism diagnosis. Her videos cover everything from sleep, meltdowns, constipation and seizures to PANS and PANDAS. Tune in to learn about Joya and how her website could help your family! We talk about: How overwhelming it was to face an autism diagnosis even as a medical professional Feeling the pressure to “fix” her child Using functional medicine to find the root cause of symptoms Deciphering between “voodoo” and science Creating a resource to quell the overwhelm and ease the burden on parents Testing to determine deficiencies and starting with basics like diet The importance of sleep for everyone! Healing is an artform not an end game Watching other children improve while her daughter struggled which led to learning How the desperation to help our kids can sometimes cloud our judgement with interventions Being methodical with trying new things to determine what’s working and what’s not How functional medicine can help parents too! Joya’s Website Books Doctors to follow /episode/index/show/embracingholland/id/20195393

Holistic Healing with Megan Martin 06/19/2021

Holistic Healing with Megan Martin For this episode we speak with Megan Martin, personal trainer, health coach and purveyor of holistic wellness who used lessons learned from her own health journey to help her son with autism. She shares with us what the biomedical approach means and how she used it to address her son’s symptoms, including how she did an at home fecal transplant. We talk about: Personal illness and disease that led to path of holistic healing Exploring functional medicine Lifestyle factors and diet being the foundation for disease prevention and treatment Supporting the entire body to help with brain function Addressing GI dysfunction as not just another symptom of autism Using diet to address autism symptoms, including eczema Naturopathic doctors and what they do All about fecal microbiota transplants (currently only FDA approved for C-Diff but many clinical trials in patients with autism) Using the AMD Ion Cleanse foot bath for detox and she get her son to sit still Other alternative treatments to try Links /episode/index/show/embracingholland/id/20195396

Travel Tips with Kristy Kargel 05/31/2021

Travel Tips with Kristy Kargel Does the thought of traveling with your children and family members with disabilities and complex medical needs intimidate you and make you shy away from leaving the house? This is the episode for you! Join our friend of the show and fellow complex medical needs mom Kristy Kargel, as we chat about how to navigate airports, long trips, and making it from point A to point B without excessive stress. We talk about: Finding accessible changing facilities Bringing medically necessary items as carry-on items Calling the airline two weeks prior to discuss specific travel needs Renting a modified van Writing into a waiver plan to justify funds to be utilized to cover travel needs Shipping supplies ahead of time from a durable medical equipment provider Pre-ordering groceries and having them delivered to your destination Renting a shower care Packing day by day for items necessary for each day Providing packets and information for fellow passengers Boarding the plane FAA approved seat harness available to keep passengers upright Noise-canceling headphones (for kids & adults) Video and photo social stories Bathroom locator apps for accessible restrooms The courage to give it a go Bed tents Free passes to national and state parks Beach wheelchairs Drive through zoos and safaris Accessible parking passes Easing into traveling and prepping the whole family Lowering expectations Links /episode/index/show/embracingholland/id/20195402

Sleep Matters with Andrea Faris Roberts 05/22/2021

Sleep Matters with Andrea Faris Roberts Andrea Faris Roberts, renaissance woman, innkeeper, two-time non-profit starter, and mother of two children, including a son with Down syndrome. She graciously invited us to her flagship inn called the Terrace Guest House to tell us the story of its inception and discuss the importance of getting away. Join us as we discover how she created a beautiful way for parents and caregivers to experience true rest, what it took to create multiple sanctuaries for parents to recharge and how important it is to put ourselves on our own to-do list. #getinthecar We talk about: The deep need for sleep Creating an organization from personal pain Reece’s Rainbow - international adoptions for children with Down syndrome and other disabilities The significant impact of caregiving and the unmet need for rest Creating a network of partner Inns (B&Bs) to serve families (40+) Curating the nation’s first year-round respite inn The unique thing about this sanctuary experience that meets unrealized needs Recuperative rest, not a vacation Putting yourself on your own to-do list Wishing that our kids didn’t have to struggle The trauma and challenges of raising a child with a disability Not “Embracing Holland” Her annual “Mommy & Me” trip for parents to get away with their child without a disability, or their own mom, or other special needs mom friend, or by yourself Andrea’s advice for new parents Links Links Social Media FB - /episode/index/show/embracingholland/id/20195405

Still Standing with Shelley Kramm 04/28/2021

Still Standing with Shelley Kramm Shelley Kramm went from designer to special needs mom, to advocate then to non profit organization founder, then blogger, and she shares with us how she made her way through each of those roles as she focused on inclusive play and empowering women. We talk about: Finding out her daughter has cerebral palsy Her transformation from mom to special needs mom Discovering the need for inclusive play spaces Putting her landscape design and architecture degree to use Deciding to start a non profit so all kids could have a place to play Making the connections to make her dream a reality Raising a million dollars for her park The birth of Hadley’s Park How over 50 parks were built in the mid atlantic area to serve everyone What exactly an inclusive park is and how it caters to all, no matter the disability Pivoting from one organization to another project, The DC Ladies Deriving joy from empowering women The shock of becoming a single parent Creating an online community for special needs moms Links Social Media IG - @SEKramm FB - Becoming Shelley /episode/index/show/embracingholland/id/20195408

Finding Hope in Holland with Jackie Buzek 04/12/2021

Finding Hope in Holland with Jackie Buzek Jackie Buzek, rare disease mom, doctorate level BCBA, and executive director of the Rise School Of Denver wrote a piece for the Mighty about her follow up on Welcome to Holland, where she shares what life has been like for her in this new, foreign land, so we knew that we just had to have her on the podcast! Join us as we find out how reframing our perspective can help us enjoy Holland! We talk about: Getting a rare diagnosis shortly after the birth of her first child What it’s like embark on the journey to Holland after spending a career serving others already there Cri du Chat, “cats cry syndrome” Finding your people, even if it’s on social media through a hashtag Being taught how strong you can be The transition from grief to loving Holland Surviving the turbulent entry into motherhood Writing as a therapeutic outlet to process big feelings Living in the moment Reframing difficult situations as opportunities to learn Links Website - Social Media IG - @jackiebuzek /episode/index/show/embracingholland/id/20195411

Joy in Suffering with Bekah Bowman 03/29/2021

Joy in Suffering with Bekah Bowman Bekah Bowman, mother, and author with a heart for ministry shares with us what it looks like to do the hard work of stepping into the church community to show them how to love kids with disabilities and to see the incredible gifts God has given them. Bekah continually points to joy in the middle of suffering and discusses how they are often roommates. We talk about: How her world was rocked upon the discovery of her children’s rare disease Raising two children with Batten disease, a rare degenerative disorder Treatment for her son Ely while grieving the loss of Titus The freedom in finding others that understand Church life and disability life being at odds with one another How people with disabilities belong in church and the body is not complete without them Watching her boys teach people things about God that they would have never learned Having a painful experience at church and seeking a new church home Asking a new church for what she needed How healing it is to attend church when the entire family is loved and cared for The weakest parts of the church are the most valuable Joni and Friends Ministry Her book, “Can’t Steal My Joy: A Journey to a Different Kind of Brave” Links Website - Social Media FB - @Team4TitusEly IG - @bekahsbowman, @roomformoreministry Related Episodes /episode/index/show/embracingholland/id/20195414

Changing the Narrative with Kalani Brown 03/21/2021

Changing the Narrative with Kalani Brown This week we chat with Kalani Brown, mother of a son with Down syndrome and chair of the Maryland Developmental Disabilities Council, among many other roles. She shares with us the importance of inclusion and raising expectations for people with developmental disabilities. We talk about: Receiving a down syndrome diagnosis and discovering support Navigating public school to find the balance of support and inclusion Shifting the idea that children are “suffering” from Down syndrome Launching into advocacy by serving in the community How Montessori concepts are designed for children with learning differences Changing the narrative about people with developmental disabilities Setting high expectations and following the child’s lead Links Books Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives – Kathryn Lynard Gifts 2: How People with Down Syndrome Enrich the World- - Kathryn Lynard Whole Child Reading: A quick-Start Guide to Teaching Students with Down Syndrome and Other Developmental Delays - Nathalie Hale Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method – David Stein /episode/index/show/embracingholland/id/20195417

Building a Bridge to Inclusion with Dee Sapp 03/14/2021

Building a Bridge to Inclusion with Dee Sapp This week we chat with Dee Sapp, Executive Director of Accessibility Bridge Corporation, mother of three including an olympic swimmer with an intellectual disability. Dee shares with us how her passion for community inclusion lead to great things for her son and to the birth of an organization that serves to encourage people with all disabilities to integrate into the larger society and connect them with resources. We talk about: Raising a son who is a competitive athlete with an intellectual disability Getting a proper, accurate diagnosis before the age of 18 to get appropriate services How support decreased after elementary school Pushing for inclusion in order to have success Getting the IEP team to think outside the box Exploring college options for students with intellectual disabilities Discovering the Think College resource Building the college wish list: social inclusion, academic inclusion, competitive sports Finding recognized and accredited programs Switching from public school to home school to prepare for college Creating a movement to rethink what people with disabilities can do Company programs targeted for people with disabilities Redefining the end goal, and thinking beyond graduating from high school Links /episode/index/show/embracingholland/id/20195420

Empowered Through Storytelling with April Green 03/01/2021

Empowered Through Storytelling with April Green During this episode, we chat with April Green, author, special educator, minister, and collaborator about raising three children on the autism spectrum and what has risen out of her family’s challenges. She shares the importance of storytelling and how we can tell our own stories. We talk about: Parenting multiple children with autism that vary in presentation Reckoning with the perception of autism Looking at the total child when making decisions Encountering obstacles with the IEP team as a special educator Battling the school system to advocate for a diagnosis Acknowledging and accepting the call to ministry Experiencing church as a family with multiple disabilities and needs Being bold to share stories Letting it out and letting it flow Path to her book collaborations and how she’s helped others tell their stories Links Books Social Media Podcast Related Episodes /episode/index/show/embracingholland/id/20195423

SCN2A Voices 02/24/2021

SCN2A Voices In celebration of International SCN2A Awareness Day on February 24th, we explore how SCN2A, a rare genetic disease, impacts each child. You’ll hear from four moms with four very different children. They will show us what life has looked like for them since their diagnosis and what they are doing as a result of knowing the genetic cause for their children’s medical conditions. A BIG thank you to the four parents who shared their voices and stories for this episode. Katie Loosley Nikki Beasley Jenna Puteri Kris Ray Other episodes from SCN2A parents Links /episode/index/show/embracingholland/id/20195426

Partnering for Independence with Carol Baltazar 02/14/2021

Partnering for Independence with Carol Baltazar In this episode, we explore what it’s like to raise a child with Aspergers to be as independent as possible, and how to advocate for and alongside them. Carol is an internal medicine physician who has a specialty practice in non surgical cosmetic procedures. She’s also the host of the Autism Mom MD Podcast, and an amazing advocate for her children and others! We talk about: Raising a son with Aspergers Finding the right kind of support for your child Learning how to motivate and encourage with the goal of independence Navigating driving, medical appointments, college and employment Raising expectations and setting the bar high Deconstructing and teaching independence skills Encouraging self-advocacy Partners in Policymaking Starting a podcast Creating community Being an innovator, she is the creator of TheraPearls! Creating space for yourself and your marriage Related episodes Others who have completed Maryland’s Partners in Policymaking program Guests who have completed PA’s Partners program Links /episode/index/show/embracingholland/id/20195429

Motivated to Advocate with Lauren Shillinger 01/31/2021

Motivated to Advocate with Lauren Shillinger In this episode, we chat with Lauren Shillinger, a fierce advocate for her children and the passage of Brynleigh’s Act for Seizure Safe Schools. We talk about: Finding a cause of her daughter’s epilepsy Tuberous Sclerosis Complex (TSC) Traveling to Texas for brain surgery Learning to navigate the system Turning grief and energy toward rare disease advocacy The TS Alliance and her work with the Maryland chapter Brynleigh’s Act for Seizure Safe Schools Ways to introduce legislation Giving back and finding hope The joy found in paying it forward Related episodes Links /episode/index/show/embracingholland/id/20195432

A Foundation of Hope with Aimee Darby 01/14/2021

A Foundation of Hope with Aimee Darby In this episode, we chat with Aimee Darby, founder of the Eliza Hope Foundation. We talk about: Recognizing and savoring the important moments The devastation that is losing a child The remarkable way that Aimee has turned her grief into action A foundation built to nurture families running to multiple therapies Her come one, come all concept that serves all levels of functioning Equipping families while they are dealing with a new diagnosis Passing it on when its incredibly difficult to do so Eliza's purposes and the lessons taught in her four and a half years here The ability to celebrate other’s successes The critical importance of saying their name, and allowing their memory to live on Related episodes Links Custom jewelry with all proceeds benefiting The Eliza Hope Foundation: A blog post that Aimee wrote a month before Eliza passed Aimee’s first blog post after Eliza’s passing /episode/index/show/embracingholland/id/20195435

When Life Gets Life-y with Maura Moore 01/04/2021

When Life Gets Life-y with Maura Moore In this episode, we chat with teacher, Maura Moore, cheerleader of her students, encourager of those in her life, and developer of the Meep! Maura shares with us her vision to help those who are struggling and ways we can help too! We talk about: Using creativity and crafting to support others The creation of emotional support orbs Helping others who are dealing with heavy things Creating and fueling a movement A creative way to connect during the pandemic Links /episode/index/show/embracingholland/id/20195438

A Few of Our Favorite Things 12/18/2020

A Few of Our Favorite Things For the last episode of our first season, we bring you a list of our most favorite things that would make wonderful gifts. From adaptive seating to innovative ways to swallow pills, to DIY options for swing, weighted blankets, to a tradition that will help your children focus on acts of service and more! We share product info and our experiences in hopes that these items will bring joy to your friends and family! /episode/index/show/embracingholland/id/20195441

Growing a Family Gratefully with Rachael Lividini 11/20/2020

Growing a Family Gratefully with Rachael Lividini This episode was created in response to a listener’s email wanting to hear about how families make the decision to have another baby following their diagnosis. Rachael Lividini shares her experience of having a baby after having her first child diagnosed with autism and rare genetic disease. This episode is filled with such joy and gratitude, and must-listen for those families considering expanding. We talk about: Navigating the new and sometimes scary world of rare disease Awakening of the mama bear mode Wrestling with the desire to have another baby Genetic and prenatal testing Making peace with parenting a child with a disability Finding gratitude in the hard places Links Have a desire to break your phone addiction? /episode/index/show/embracingholland/id/20195444

Take Me to Church 11/09/2020

Take Me to Church This episode is all about attending church with family members with disabilities and our tour guides for this one are Stephanie Watkins and Kris Detrow. We talk about: Finding a church with all of the family member’s needs in mind Handling behaviors at church as a family Different church models of accommodating children with disabilities Communicating your family’s needs What makes a church Handling hurt within the Christian community What makes people walk away from the church Alternatives to typical church Links Have a desire to break your phone addiction? /episode/index/show/embracingholland/id/20195447

Groomed For This with Eva Queen 09/14/2020

Groomed For This with Eva Queen This week’s episode is packed full of wisdom, resources, thoughts, ideas and best of all the treasure that is Ms. Eva Queen. She shares with us the humanity of embracing people who are different. We talk about: Eva’s advocacy work in the disability community that spans decades Her mission to bring inclusion to churches Dedication to preserving marriages The importance of early intervention and racial equity for children with disabilities Eva’s journey raising her daughter with a disability Tips for newly diagnosed families Links For a giggle, especially if you work at a college: Maryland Parent Resources Eva’s non-profit organization - Eva’s Book! Marriage Ministry for parents of children with disabilities - Sharing the Gospel with people impacted by disability /episode/index/show/embracingholland/id/20195453

Embracing Holland

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