Show cover of Embracing Holland

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.

Tracks

Embracing Holland Trailer
Hi, I'm Angie Auldridge, and I'm Megan Barrett, Welcome to Embracing Holland.  When Meg and I received each of our children's diagnoses, we found ourselves in the land of worry, grief, and unknown, but after a while, when we realized that this excursion was not temporary we settled in and began to see life in a new way. As a special needs rite of passage we were each handed the Welcome to Holland poem with the intent of showing us that this place is not so bad and in fact can be really beautiful.   Some days are dumpster fires and other days are filled with unexpected joy.  Regardless of the cause of your detour, the struggle to embrace this new life is universal. Our hope is to share with you how ordinary people on this journey have unpacked their bags and faced adversity with creativity, passion, and determination. We'll bring you interviews, field trips, cool stuff we find along the way and glimpses into the reality of raising children with differing needs.  Join us as we embrace Holland!
01:11 3/3/20
Maiden Voyage
Join us as we embark on the Maiden Voyage of Embracing Holland. Before we dive into sharing interviews and topical episodes we thought we would start the journey with an introduction to who we are and how we landed here. Angie is the mother of three children, a college disability advisor, and wife to her high school sweetheart, Isaac (Ike). Their middle child, Mark (nicknamed Mighty), was diagnosed with autism as well as a rare genetic mutation, SCN2A in 2015. Since this time she has spent the last five years volunteering on multiple community groups and boards with the hope of improving the quality of life and services for people with disabilities. Angie's passionate about creating community, sharing stories and supporting others in the face of fear and uncertainly.     During the time spent driving her son to his medical and therapy appointments, she began listening to podcasts, shows about autism, genetic research, parenting, true crime and everything in between. She fell in love with listening to others share their stories and wished that someday she could do some storytelling of her own in order to provide encouragement and hope to those who are walking alone in the early dark days of a new diagnosis. On a trip to a special education law conference, she shared her interest to do a podcast with her friend Meg, and very soon after they purchased sound equipment and began practicing recording in Angie's dining room. The goal was to provide a glimpse into the world of parents turning the corner of grief and loss to possibility and ingenuity.  So they began searching for a podcast name and settled on Embracing Holland; a play on the name of the "Welcome to Holland" poem often given to parents of a newly diagnosed child. https://www.emilyperlkingsley.com/welcome-to-holland As part of Angie's travels, she's met a number of advocates, bloggers, small business owners, authors, speakers, and change-makers all determined to create resources that did not previously exist, advocate for change and use their voices to make a difference in the world, specifically for people with disabilities. And so they wanted to share their stories with you.  You can find Angie on Facebook, Instagram, Pinterest and on her blog, www.mightyandthebean.com.  Find Embracing Holland on Facebook, Instagram, Twitter, and Pinterest. If you have an idea for a show, interview or question, please email us at hello@embracingholland.com  The TED Talk mentioned, https://podcasts.apple.com/us/podcast/lies-our-culture-tells-us-about-what-matters-better/id160904630?i=1000440683496 If you are encouraged by our podcast please consider leaving a review on iTunes here!
57:03 3/6/20
Ausome Advocate and Author with Catherine Hughes
Meet Catherine Hughes.Hailing from southeast of Pittsburgh, PA in a small town recently dubbed as "the most boring town in Pennsylvania," Catherine Hughes is the daughter of two English professors. She is a passionate advocate, innovative storyteller, and community strategist. For over 16 years, she has provided comprehensive support and passionate advocacy to individuals and self-advocates, their families, and surrounding natural supports throughout their communities. She considers herself a servant leader, one who cultivates, develops and maintains relationships with grace and grit in order to create, enhance, and promote services and programs that transform lives. On a personal level, her calling (not a career) allows her to give back some of what has so graciously been given to her family. She proudly serves as the Director of Family Support and Community Engagement at Achieving True Self servicing families across the Northeastern U.S. Catherine is a best-selling author and editor for multiple books including It's Going to be AUlright: Testimonies from Ausome Women Raising Ausome People, Made for More - Mental Health Edition and You Are Not Alone: Stories, Resources and Hope from Autism Moms. She is set to release several more works in 2020. Catherine manages a blog and social media platforms as The Caffeinated Advocate. If you were wondering about her caffeine of choice, she's a Dunkin' girl. Living with her in that "boring" (ok, it's not actually boring) town but not so boring household are Mama Betty, Christian, and their pets Callie, Cookie, Candie, Hannah, Maddie and Raven the Cats and the one and only Abby Dog. www.thecaffeinatedadvocate.com Books by Catherine Hughes: amazon.com/author/hughescatherineFacebook: @caffeinatedadvocateInstagram: @caffeinatedadvocateLinkedIn: @catherineahughes Advocate, Best-Selling Author, Editor, Speaker, and Trainer Founder of The Caffeinated Advocate Director of Family Support and Community Engagement, Achieving True Self Autism Moms Are Beautiful Advisory Board The ABA in PA Initiative Board Member
49:51 3/8/20
Life Hacks for Special Needs Parents
Meg & Angie share their special needs lifehacks Surviving medical & blood work appts Navigating insurance issues Money-saving ideas Making mealtime & grocery shopping easier Organizing & homes for things Taking meds Preparing for new things Elopement & wandering Obtaining medical equipment & fencing Technology to keep children safe Potty challenges And much more!  Tune in and check out our show notes! Comfort Hold Different holds for supporting a child during a pediatric procedure https://www.nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/comfort-hold-techniques    Google Calendar for medical tracking Each child has a separate calendar, but you could create calendars based on whatever you want to track.   https://lifehacker.com/track-medical-conditions-with-google-calendar-168218    TOILET TRAINING The best videos ever -  https://www.actcommunity.ca/education/videos/toilet-training-for-everyone?fbclid=IwAR1dIvCp_0fFIcADBbp-FZ7OH2BLZT11HfT6PJonayIVRKcieUvYzMI58gc   ACCESSIBLE PARKING Link for guidelines per state - https://autismawareness.com/parking-permits-for-autism/  WANDERING/ELOPEMENT Sleep Safe Bed - https://sleepsafebed.com/?matchtype=e&network=g&device=c&keyword=sleep%20safe%20bed&campaign=651802980&adgroup=30470176262&gclid=Cj0KCQiAkePyBRCEARIsAMy5SctAEsnDcZ7NUw61Ve4xokeMg1OhpUCJQqFpPfmZuN__llNGNtmtCcIaArVOEALw_wcB  Door sensor by Smart Things https://www.smartthings.com/products/-/filter/categories/sensors    Fencing - Apply for grants  https://www.modestneeds.org/index.asp   Locator - JioBit - Real-Time GPA tracker - https://www.modestneeds.org/index.asp  Project Lifesaver - https://projectlifesaver.org/  DIY Swing Borrow option from Equipment Connection - https://www.equipforchildren.org/  FOOD Prepdish - fits special diets - https://prepdish.com/ VIDEO SOCIAL STORIES https://www.lcsc.org/cms/lib6/mn01001004/centricity/domain/21/socialstories.pdf PICTURE DAY Download a YouTube video to your phone https://www.engadget.com/2014/05/28/how-to-download-youtube-videos-to-your-iphone/ 
71:15 3/21/20
Changing Spaces and Creating Hope with Christina Abernethy
Christina is a dedicated wife, mother of three, and passionate advocate for people impacted by disabilities. She has coordinated events to fund research, supports and service dogs for families. She has served on local committees, coached an adaptive cheerleading team, and won awards for successful fundraising endeavors including those for “Team Bubba,” honoring her son with autism. She is the founder of Love, Hope and Autism and is proud to be the coordinator for Changing Spaces Pennsylvania, a movement to build accessible restrooms with powered height adjustable adult sized changing tables across communities to promote inclusion. She is working with legislators to pass a bill in Pennsylvania that would require such facilities in hospitals, airports, museums, rest stops, malls and more. She also works as a Family Support and Community Engagement Specialist at Achieving True Self, supporting families like hers. Christina is committed to spreading a message of heightened awareness and acceptance of differences, ultimately inspiring hope. For her efforts, she won the ACHIEVA Award Of Excellence for Family Support in 2018 and in 2019 was awarded a medal by the Autism Connection of Pennsylvania. She is a two-time best selling coauthor, most recently including “You Are Not Alone: Stories, Resources and Hope From Autism Moms;” a book that is filled with inspiring stories, helpful resources, and ultimately hope for families to let them know that they are not alone in their journey and that they too were made for more. Top 5 Tips for Taking on an IEP with Confidence https://www.facebook.com/watch/?v=329167527805115 You Are Not Alone: Stories, Resources and Hope From Autism Momshttps://www.amazon.com/You-Are-Not-Alone-Resources/dp/1701275155?fbclid=IwAR3IWY6Z6ngb3NsMHq_Qu8vYXgYEgG-oNBDeUe8ESLltBSn233AJSFAr0IE Tips and Tricks that helped us during the fluhttps://www.facebook.com/LoveHopeandAutism/videos/2599947736900132/
22:38 3/23/20
Families That Advocate Together Stay Together with Laura Hatcher
Laura is Simon’s mom and the Director of Communications for Little Lobbyists. Laura believes that, regardless of health or ability, all people have the right to life, liberty, and the pursuit of happiness. She also believes that every person has gifts to share, celebrate, and use to make our world more beautiful. Laura is a graphic designer, small business owner, and adjunct professor. She believes in the power of great design for great organizations and specializes in communication for education, health care, and the arts. She loves being in the classroom helping creative people turn their passion into their profession. When she isn’t creating or teaching design, Laura works toward making the world a more beautiful place by volunteering on various board committees that support arts in education and the inclusion and celebration of people with disabilities. She loves being a mom to both her amazing kids, does a lot of yoga, bakes impressive cakes, and really appreciates a nice manicure. Laura can be reached at laura@littlelobbyists.org https://littlelobbyists.org/  https://cnd.com.ua/en/products/shellac-peacock-plume
39:37 4/5/20
Pandemic Survival
This week on Embracing Holland we chat about all things stay at home orders, and include resources that may be helpful as you hunker down at home. ⁣ *Handling working & being home with kids⁣ *Schedules⁣ *Navigating children’s anxiety⁣ *Occupying littles⁣ *Guarding our mental health⁣ *Home haircuts⁣ ⁣ ...and more! ⁣ Mayim Bialik - Some Thoughts From Home video -  https://www.youtube.com/watch?v=aUnWJSkHYDM     Kendra Adachi - The Lazy Genius - http://www.thelazygeniuscollective.com/ https://www.youtube.com/channel/UCJDxz7WBmjSpYu4ogFbgxIQ    Cape May Zoo Talks - https://www.youtube.com/channel/UC7NH6m3PG5s6FWn0RRXs1Sw   San Diego Live Cams https://zoo.sandiegozoo.org/live-cams  *Also recommend the little mini-series Penguin Beach -  https://zoo.sandiegozoo.org/videos   Calm Chocolate - https://www.gooddaychocolate.com/products/calm?variant=6932889698369   Creekside Anxiety Comfort for Children - https://creeksidenaturals.com/product/anxiety-comfort/   Joy-Filled by Happy Healthy Hippy - https://happyhealthyhippieco.com/products/joy-filled    Parasympathetic Essential Oil by Vibrant Blue Oils https://vibrantblueoils.com/product/parasympathetic-essential-oil/     Meditation Quickie - https://avivaromm.com/quick-meditation/ How to Perform 4, 7, 8 breathing - https://youtu.be/YRPh_GaiL8s Dr. Elisa Song - https://healthykidshappykids.com/2020/03/28/gratitude-coronavirus-resilience/   Autism Homeschool Helper - https://theautismhelper.com/emergency-home-school-kit/ Jessa Seewald Little Boy Haircut Tutorial - https://www.youtube.com/watch?v=NnvaPAoEG1o   Curly Cut Tutorial - https://www.youtube.com/watch?v=ORv2hInGB0Y Men’s Cut Tutorial - https://www.youtube.com/watch?v=RJk2rHpocP0
44:07 4/14/20
An Alternative Approach with Diana Wingate-Gaiser
 Diana is the mother of two boys on the autism spectrum.  She has a vested interest in homeopath and alternative therapy for treating symptoms of autism and the environmental toxicity link to autism including vaccines. She volunteered extensively for six years with Autism Speaks raising funds for the annual walk, recruiting legislative support, spreading awareness within the community and was the District Area Chair for their grassroots advocacy.  Diana has spent countless hours advocating, emailing, calling and meeting with legislatures to help mandate insurance coverage in Maryland for children and adults with an autism diagnosis.  This includes meeting with the Autism Technical Advisory Group at The Department of Mental Health and Hygiene and The Maryland Insurance Commission.  This goal was accomplished through the collaboration of efforts with parents and stakeholders in the community including Pathfinders for Autism. The revised Habilitative Mandate went into effect April 17, 2014. Most recently Diana worked with local lawmakers to pass two very important pieces of legislation; ensuring P.A.N.D.A.S. was covered by insurance and ensuring pediatrics have access to medical marijuana in public and non-public school settings. Diana has 19 years of professional and financial experience with Johns Hopkins University. She is a warrior for her own kids and a dedicated advocate in the local and national community.  Links from the show Whole Plant Access for Autism - Facebook Group Maryland Medical Cannabis Commission  Realm of Caring - Cannabis Education Research and Support The Rogue Map Rogue Recovery Facebook Group 
47:57 4/20/20
The Art of Supporting the Special Needs Mom
Three different moms of children with disabilities share what it looks like to feel supported through difficult times. If you ever wonder what special needs parents may appreciate tune in. And if you are a special needs parent and aren't sure how to ask for help, most definitely tune in. Sam shares ways parents can be supported that you may not have thought of, Shelley discusses what it looks like to acknowledge when professional help is needed and how beneficial it can be, and Joyce shares how we need to get over ourselves and make it known what we need. Image used with permission.   https://www.freepik.com/free-photos-vectors/background
63:57 5/4/20
Lifetime Bonds - Wisdom from Special Sisters
This week on the podcast we asked four sisters how their lives are impacted by the important role of being a sibling to someone with a disability. Between a pair of Hannahs and our two sweet little girls, you'll get a glimpse of their wisdom and we hope that you come away with ideas on how to care for, love, and support these special sibs. Adam's Camp  Special Needs Family Camp   Wisconsibs  Siblings of Campers with ADHD    Sibling Support Network  
53:06 5/13/20
Beautifully Understood with Denise Sullivan Near
Denise Sullivan Near is a Children’s book author who turns her first-hand experience with her sweet little girl into a fun, very simply written, educational picture book. Through “Nessie and Her Tisms,” Denise teaches young children about some of the unique behaviors of children on the spectrum by nurturing their natural curiosity. She is a mother, a wife, a writer, a Dental Hygienist and an Autism Awareness Advocate. She currently lives in Williamsport, Maryland with her husband Seth and three beautiful children, Kynzee, Harper and Duke. Siblings of the Spectrum   Nessie and Her Tisms    Bath and Body Works Mint Lip Products
49:25 5/24/20
Seizing Joy and Grace with Tracy Umezu
This week on the podcast we bring you Tracy Umezu's story of losing two daughters in two years and her resolve to bring joy to others in her daughters' memory. Tracy takes us on a walk through her grief, her experience of seeing heaven, and gives us ideas on how to love others after the loss of a child. Tracy shares her story through her beautiful writing on her site, www.seizeyourjoy.org. Check her out and have a listen, you'll be glad you did. Seize Your Joy   Today Show Parenting Contributor   Families SCN2A Foundation  
70:15 5/28/20
A Dad's Eye View
Join us as we hear from three fathers who share with us what it has been like to parent children with disabilities, and how their view of their role and their children has changed over time.   We learn about... - The impact on marriage and friendships - Division of labor - Change of parenting - Civic duty to serve - Pivoting your goals and dreams - Reacting to a new normal Simone LaFray and the Chocolatiers' Ball
70:50 7/15/20
The World According to Jake's Mom with Jenn Lynn
What we talk about… Jenn and her son Jake’s work with their local police department on autism understanding and awareness Jenn’s pivot from a media career to one of community advocacy for people with disabilities  Seeing behavior as communication - “Don’t shape by shaming” Mental health advocacy Adoption Being mentored by Temple Grandin’s Mom!  Bio Jenn Lynn is passionate about helping all families dealing with Autism.  She is mother of a teenage son, Jake, with Autism Spectrum Disorder, ADHD, Anxiety Disorder, Mood Disorder NOS, and Executive Function Disorder.   Lynn serves on the Commission for People with Disabilities of Montgomery County, All Clear Education Services, the Arc US Diversity Committee, Humana Behavioral Health and collaborates with I/DD professionals and doctors.  Ms. Lynn strives to educate, enrich, and empower parents and community members by sharing what she's learned from 4 years training Law Enforcement, 2 years as an ABA technician, experience with PBIS training, first-hand behavior training at the Kennedy Krieger Institute, her work in special education (public/private schools), and her job with adults with special attributes.  ​The former TV news producer speaks and writes uplifting and encouraging stories of living on the spectrum at theworldaccordingtojake.com, is a published author, adoption advocate, is a Director on the Mattie J.T. Stepanek Guild for Sainthood and performs professionally as a flute/piccolo player.​ Upcounty Community Resources Maryland Teen Living With Autism Forms Relationship With Police The World According to Jake  Council appoints member of the Policing Advisory Commission to improve oversight of the Montgomery County Police Department 
66:49 8/10/20
Weathering The Back To School COVID Storm
In this episode, we talk about distance learning, homeschooling, unschooling, and all of our feelings and opinions about what the fall may look like. Some highlights IEP considerations for homeschooling Maryland’s eligibility requirements for the Autism Waiver Maryland Autism Waiver Info Becoming better school partners as a result of our front-row seat to learning Homeschool resources mentioned AFLS - Assessment of Functional Living Skills  Teaching Textbooks The Good & the Beautiful Homeschool Curriculum
43:58 9/6/20
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:  Hamilton Higher Ed Parody  Maryland Parent Resources Eva’s non-profit organization - Community Advocates for You Kennedy Krieger Institute Parents Place of Maryland Eva’s Book! All Things Are Possible by Eva L. Queen Marriage Ministry for parents of children with disabilities - The Hali Project Sharing the Gospel with people impacted by disability Joni and Friends
45:15 9/14/20
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? Revelation Wellness Phone Freedom Challenge 
51:55 11/9/20
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? Revelation Wellness Phone Freedom Challenge 
49:31 11/20/20
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! Quip Toothbrush Sensory Theraplay Box Skootle Box The Giving Manger Kore Kids Wobble Chair Little Sleeper Keeper LED  Diffuser Weighted Stuffed Animal - Happy the Hedgehog Inflatable Pea Pod Kids Book Rack Olive and June Poppy Nail Polish Holder The Calm App Book - Unbroken Faith: Spiritual Recovery for the Special Needs Parent DIY Platform Swing DIY Weighted Blanket 4 oz. Portion Cups No-Tie Silicone Laces No-Tie Elastic Laces Echo Dot 3rd Gen Alexa Museum Putty Shower Dispenser Wyze Camera Gel Nail Polish UV Nail Lamp Medi Spout Pill Swallowing Bottle Cap Pill Swallowing Cup Melissa & Doug Reusable Stickers Water Wow Scented Water Activity Books Waterproof Bluetooth Speaker Visual Timer Wool Roving Beauty Coil Cotton Bluetooth Headphones Echo Show 5 Alexa Food Dispenser Sliding Door Lock Ezy Dose Medicine System Pill Organizer Kids Foam Armchair
52:43 12/18/20
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 All You Meep is Love All You Meep Is Love Facebook Page Meg's Favorite Cheap Crochet Hooks
35:45 1/4/21
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 Seizing Joy and Grace with Tracy Umezu Links The Eliza Hope Foundation The Pinecone Collection Custom jewelry with all proceeds benefiting The Eliza Hope Foundation:    Holland  A blog post that Aimee wrote a month before Eliza passed Eliza Hope Aimee’s first blog post after Eliza’s passing
52:02 1/14/21
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 Families That Advocate Together Stay Together with Laura Hatcher Changing Spaces and Creating Hope with Christina Abernethy Links Maryland General Assembly - HB370 Maryland General Assembly - SB225  Find your Maryland Representatives Kindness is Golden book Amanda Gorman, Youth Poet Laureate, has speech and auditory processing issues Low Intensity Support Services - LISS
48:21 1/31/21
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 Families That Advocate Together Stay Together with Laura Hatcher An Alternative Approach with Diana Wingate-Gaiser The World According to Jake's Mom with Jenn Lynn Groomed for This with Eva Queen Take Me to Church (Stephanie Watkins) Guests who have completed PA’s Partners program Ausome Advocate and Author Catherine Hughes Changing Spaces and Creating Hope with Christina Abernethy Links Autism Mom MD Podcast Maryland Partners in Policy Making Program Life 360 - Family Locator and GPS Tracker Maryland internist finds inspiration in her grocer's freezer Ark Therapeutic Lip Blok Mouthpiece Kids Slurp Straw 9 Pack Stackable Stainless Steel Kids Cups for Toddlers
46:11 2/14/21
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 Seizing Joy and Grace with Tracy Umezu Growing a Family Gratefully with Rachael Lividini A Dad's Eye View  The Art of Supporting the Special Needs Mom Links FamilieSCN2A Foundation FamilieSCN2A Global Support Group SCN2A Related Autism & Epilepsy: The FamilieSCN2a Foundation SCN2A Australia SCN2A Insights Podcast SCN2A Families UK - FB page SCN2A Europe Simon Searchlight - SCN2A (Research) SPARK for Autism - SCN2A A Walk with Jo Facebook Page Eye Gaze - Think Smart Box Look to Learn - Activities for Eye Gaze Children’s Hospital of Philadelphia - Dr. Ingo Helbig Children’s Mercy - Dr. Coffman
53:35 2/24/21
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 It’s Going to Be Aulright Autism Relationships Matter Social Media April Green Facebook Page April Green Instagram Podcast Keeping it Moving with April and Vondell Related Episodes Ausome Author and Advocate with Catherine Hughes Take Me to Church
56:14 3/1/21
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 Accessibility Bridge Corporation Think College Think College Documentary
46:57 3/14/21
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 Maryland Developmental Disabilities Council State Developmental Disabilities Council Down Syndrome Diagnosis Network National Down Syndrome Society National Down Syndrome Congress Local and National Down Syndrome Support Networks Down Syndrome publications Sting Sings Uplifting, Original Tune for World Down Syndrome Day 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
26:44 3/21/21
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 - Bekah Bowman Joni and Friends  Bekah’s Book Room For More Ministry - Coming soon! Social Media FB - @Team4TitusEly IG - @bekahsbowman, @roomformoreministry Related Episodes Take Me to Church Groomed for This with Eva Queen
43:28 3/29/21
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 - A Different Us Our Follow Up on Welcome to Holland - MIGHTY article Social Media IG - @jackiebuzek
46:03 4/12/21
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 Shane's Inspiration - Inclusive Play Becoming Shelley Washington Post Article - A Playground for Hadley I am Able - How Sarah Kramm advocated for her sister Social Media IG - @SEKramm FB - Becoming Shelley Hadley’s Park - Facebook Page Special Needs Moms of Montgomery County - Facebook Page Special Needs Moms of Montgomery County - Private Facebook Page
51:21 4/28/21

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