Shows
Dad to Dad PodcastDad to Dad 278 - Adam Birchmeier of Muskegon, MI Whose Daughter With Angelman Syndrome, Very Sadly Passed Away In AugustOur guest this week is Adam Birchmeier of Muskegon, MI who is a Business Sales Representative with Access Health and the father of daughter with Angelman Syndrome, who very sadly passed away in August, after a brief illness.Adam and his wife, Nicole, have been married for 4 years and are the proud parents of Maddie who was born in June 2020, was diagnosed with Angelman Syndrome at 18 months and who, very sadly, passed away in August, shortly after her third birthday. We also learn about Maddie's Joy, the blog and podcast Adam created to reflect on the...
2023-11-0353 min
Maddie's Joy: An Angelman JourneyEpisode 21: Cameron NixCameron Nix joined the podcast for Episode 21 and talked about navigating the first year of his daughter's diagnosis.
2023-10-2024 minMaddie's Joy: An Angelman JourneyEpisode 20: Maddie's EulogyMadelynn Joan passed away on August 30, 2023. Many of you reached out to us to convey that you would like to be there but could not make the prayer service or funeral. This was Adam's eulogy that he read at the prayer service.
2023-09-1512 minMaddie's Joy: An Angelman JourneyEpisode 19: Your Story MattersHaving an Angelman Syndrome diagnosis can be a lonely process. I've found that sharing Maddie's story has opened the hearts and minds of many people outside of our family.
2023-06-0918 minMaddie's Joy: An Angelman JourneyEpisode 18: Maddie's IEPMaddie went through her first IEP meeting. Since Maddie has Angelman Syndrome, these Individualized Education Plans will be updated year after year. Hear how our first one went.
2023-05-1914 minMaddie's Joy: An Angelman JourneyEpisode 18 Preview: IEPsA quick preview of episode 18 will be all about Maddie's first IEP meeting. I'll go over how it went, how I prepared, and what I wish I would have done differently.
2023-05-1200 minMaddie's Joy: An Angelman JourneyEpisode 17: Provider TurnoverHaving a child with multiple specialists is hard. It's even harder when you have to adapt to a new provider who doesn't know all of the ins and outs of Angelman Syndrome or your child.
2023-05-0515 minMaddie's Joy: An Angelman JourneyEpisode 16: Public Success, Private FailureIn episode 16 of Maddie's Joy: An Angelman Journey, I discuss how a new phrase caused me to look inward. Being a parent to an Angelman Syndrome child can be hard. I discuss some of my shortcomings as a parent and how I have worked to resolve them.
2023-04-2819 min
Ready, Set... Change!Should YOU become a Change Manager?Part 2 of my discussion with PhD in industrial and organizational psychology Dennis Zajac, covers the characteristics that make a great change manager and how to leverage your experience when starting out in the field. This episode examines the most important aspects of communication and how to utilize those skills to establish yourself as a leader of change in your organization.
Book recommendations:
Think Again: Adam Grant- https://adamgrant.net/book/think-again/
Humble Inquiry: Edgar H. Schein, Peter H. Schein https://www.amazon.com/Humble-Inquiry-Second-Instead-Telling-ebook/dp/B08DG9CLB3/ref=sr_1_1?hvadid=580750340627&hvdev=c&h...
2023-04-2436 minMaddie's Joy: An Angelman JourneyEpisode 15: Aaron Ferguson's Sibling StoryAaron Ferguson was kind enough to share his experience as a sibling of an Angelman individual. We discuss how he maintains a strong relationship with his brother as well as some of his experiences along the way. Aaron also has written about his experience in the Wisconsin State Journal. If you have not read his opinion piece, please check it out below.
Aaron Ferguson: Seeing the joys and struggles of angels has given me life (madison.com)
2023-04-2125 minMaddie's Joy: An Angelman JourneyEpisode 14: The Other Side of GriefDue to some audio issues, I recycled a vlog post that I recorded before the podcast was even released. I talk about my transition from being a newly diagnosed Angelman father to accepting Maddie's diagnosis.
2023-04-1411 minMaddie's Joy: An Angelman JourneyEpisode 13.5 : Family UpdateI just give a quick update on what has been happening with our family and when you can expect the next blog and podcast.
2023-03-3102 minMaddie's Joy: An Angelman JourneyEpisode 13: Kitty Murphy - National Special Events Director ASFKitty Murphy who is the National Special Events Director for the Angelman Syndrome Foundation joined the podcast to discuss the upcoming 2023 Angelman Syndrome Foundation Walk. Kitty touches upon what to expect from the ASF's biggest fundraiser of the year, and also how some of your donations are changing lives of individuals with Angelman Syndrome.
2023-03-1712 minMaddie's Joy: An Angelman JourneyEpisode 12: Feeling FrustratedBeing a special needs parent can be difficult. Over the past few weeks I've been feeling especially frustrated by Maddie's Angelman Syndrome diagnosis. I do some reflection on the things that frustrate me the most about this syndrome.
2023-03-1017 minMaddie's Joy: An Angelman JourneyEpisode 11: Pediatric Physical Therapist Micah HuegelMicah Huegel joined the podcast for episode 11. Micah is a pediatric physical therapist with Mary Free Bed in Grand Rapids who is certified in neurodevelopmental techniques. He touches on best therapy practices and gives some advice to parents who are struggling to navigate the healthcare system.
2023-03-0328 minMaddie's Joy: An Angelman JourneyEpisode 10: Awake At NightIn Episode 10 we discuss what keeps me up at night. There are major hurdles that we will have to overcome, especially in regards to Maddie's future.
2023-02-1724 minMaddie's Joy: An Angelman JourneyEpisode 9: Medicaid RedeterminationsThe Medicaid redetermination moratorium is set to expire on April 1st. We talk about what this means and how you can prepare.
2023-02-1019 minMaddie's Joy: An Angelman JourneyEpisode 8: What is Angelman Syndrome?Episode 8 focuses on what Angelman Syndrome is. We go into the genetics of Angelman Syndrome and some common symptoms of Angelman Syndrome. We also discuss how rare Angelman Syndrome is compared to other syndromes.
2023-02-0322 minMaddie's Joy: An Angelman JourneyEpisode 8 Preview: We're Back On February 3rdMaddie's Joy: An Angelman Journey podcast is back on February 3rd. We'll be going back to basics and talking about what Angelman Syndrome is, and how rare it is compared to other syndromes.
2023-01-2701 minMaddie's Joy: An Angelman JourneyEpisode 7: SleepSleep issues affect 20-80% of children with Angelman Syndrome. Based on my experience, that number is on the higher side. See some simple tips that can make a world of difference in your child's life.
2022-12-1618 minMaddie's Joy: An Angelman JourneyEpisode 6: Caregiver BurnoutOn today's episode I build upon last week's episode and talk about caregiver burnout. I talk about the article "Why Self-Care Is Essential to Parenting" by Juliann Garey. I hope you enjoy this episode. Don't forget to subscribe, comment, and rate the podcast
2022-12-0917 minMaddie's Joy: An Angelman JourneyEpisode 5: Build Your CommunityIn Episode 5 I describe how I built a community of support around our family.
2022-12-0219 minMaddie's Joy: An Angelman JourneyEpisode 4: The Clinic VisitWe visited an Angelman Syndrome specific clinic for the first time. We detail our experience at Children's Hospital Colorado.
2022-11-1823 minMaddie's Joy: An Angelman JourneyEpisode 4: A PreviewWe went to the Angelman Syndrome specific clinic in Denver this week. Here's just a preview of what's to come in the next week.
2022-11-1101 minMaddie's Joy: An Angelman JourneyEpisode 3: ASF CEO Amanda MooreThe Angelman Syndrome Foundation CEO Amanda Moore joined the podcast to talk about a variety of resources available to caregivers of all ages.
2022-11-0427 minMaddie's Joy: An Angelman JourneyEpisode 2: Maddie's StoryIn this episode I take you through Maddie's road to diagnosis. I also discuss the advice that shook me from my post diagnosis fog.
2022-10-2831 min
Maddie's Joy: An Angelman JourneyEpisode 1: Ten Steps For Angelman ParentsIn this episode I discuss Rebecca Pender's top ten list A Rare Mom's Advice. I apply this to the Angelman Syndrome community. This is a great listen for anyone whose child is newly diagnosed with a syndrome or disease.
2022-10-2125 minMaddie's Joy: An Angelman JourneyEpisode 0: Welcome to the PodcastWelcome to Maddie's Joy: An Angelman Journey. Join us as we explore Angelman Syndrome. Feel free to laugh, cry, and share with us.
2022-10-2002 min