Embracing Holland

23/07/2024

My podcast partner in crime, Megan Barrett wrote the following post today. Her words so perfectly describe the battle. The high of being able to clear a hurdle and then the devastation felt when we face it again. Thanks for giving words to this phenomenon, Meg. 💕

“One thing they don’t prepare you for when you have special needs kids is situational nature of their success.

They will make huge strides, and overcome obstacles you never dreamed they would attempt to conquer, and you gain this bizarre sense of confidence. They did so well at home, or in a controlled environment! You push the boundaries a bit, and they nail it. You repeat it, and are successful again, and again, and again! You’ve got this thing mastered. You decide to take this show on the road.

Then, once you are in the real world, a variable changes. Its’ too loud, or not loud enough, a food just isn’t perfect, you can’t find a charger, they only have paper straws. And all the air begins to leave the room. You see the signs of distress, the walls start closing in, and you feel like a fool for ever thinking it was safe to leave the house.

In an instant you watch as the eyes of all the people who have lovingly supported and cheered you on from the sidelines widen, their jaws begin to drop. “I thought things were getting better?!” “Didn’t you say he could handle this?” “I had no idea it was like this.”

Realistically, when you are starting off with such a huge deficit, you have to celebrate every tiny baby step forward. You have to, or you will drown. But the insidious thing about progress is the hope that it brings. Hope for normalcy, hope for friends, and relationships, hope for a meaningful life that isn’t dependant on or curated by me.

In a moment, all that falls apart. Places you thought were safe, where you could breathe and let you’re your guard down for a moment, suddenly aren’t. The rotating list of things you felt empowered to try next grinds to a halt. And back into our bubble we crawl. To the place where he is safe, no one can hurt him, and he has a best friend. Even if that’s me. We will sort rocks, and measure cat fur, and perseverate over random nature facts, because that’s his happy place. And his happiness is my happy place.

We accept that we will miss opportunities, and lose relationships. We don’t expect anyone to understand, or to take on the task of accommodating us. But the tears on the drives home, or locked in the bathroom wear on you. Putting on a brave face for him to feel brave is hard, harder than I expected it would be.

Not having the life I planned is something I accepted LONG ago. It’s just not in the cards for me. But learning to not get my hopes up too high for these kids has proven a much more difficult thing to master.”

11/09/2022

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 save to her son.

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 ...

24/07/2022

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.

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 creati...

16/05/2022

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 Cheeky Sassy Me.

We talk about:

* Removing the label, and making it our project to address our children’s challenges
* Making the mental choice to stop carrying the grief and move forward
* Navigating inclusive schooling and raising the expectations
* Our responsibility and purpose are to find ways to help our children to succeed
* Finding workarounds and collaborating with the right people
* Helping her daughter create a passion project as a family
* Sibling involvement

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

11/03/2022

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.

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....

10/02/2022

Join us as we kick off season 3 of the podcast!

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.

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 ...

17/12/2021

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.

Best wishes for a healthy, uneventful holiday season free from meltdowns and a bright new year sans trips to the ER and calls from your child’s school!

XO XO

Angie & Meg

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.  Best...

16/11/2021

Have you ever seen the meme about a special needs parent who fell in a hole? Well, that's where Megan Barrett and I find ourselves. When we started the Embracing Holland 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.
Full episode here: https://embracingholland.com/circling-the-drain-a.../

22/09/2021

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 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 dea...

13/08/2021

F***l 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 for 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 f***s (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.

F***l 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 for those who are struggling in the dark and aren't comfortable reaching out for suggestions in the online support groups. In respon...

12/07/2021

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!

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 th...

21/06/2021

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 f***l transplant.

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, i...

06/06/2021

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.

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 h...

28/05/2021

Andrea Faris Roberts, renaissance woman, innkeeper, two-time non-profit starter, and mother of two children, including a son with Down's 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.

Andrea Faris Roberts, renaissance woman, innkeeper, two time non-profit starter and mother of two children, including a son with Down's 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....

28/04/2021

Shelley Kramm went from designer to special needs mom, to advocate then to nonprofit 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. Have a listen and be inspired!

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.

12/04/2021

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 to the "Welcome to Holland" poem. 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!

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...

29/03/2021

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.

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....

21/03/2021

In celebration of World Down Syndrome Day, 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.

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.