Rare Meet For Moms

Welcome back to Rare Meet for Moms! In this season two kickoff episode, host Meghan Weaver shares a heartfelt update on life behind the scenes since season one. From launching a special needs magazine to major communication wins with her daughter Rowan, Meghan reflects on the past year, celebrates growth (big and small), and sets the tone for what’s ahead this season.This episode is part personal update, part encouragement, and part reminder that you’re not alone on this rare parenting journey.

Meghan Weaver interviews Charlie Taylor from Foundation of Strength, discussing their partnership with gyms to provide fitness programs for individuals with autism, Down syndrome, and other different abilities. Charlie shares his journey, from his early interest in weightlifting to his initiation into training individuals with special needs. They talk about the origins of Foundation of Strength, the challenges of expensive personal training, and Charlie's innovative approaches to making fitness accessible. The discussion covers specific training methods, including adaptations for individuals with low muscle tone, and the significance of inclusive, fun fitness activities. Charlie also emphasizes the importance of nutrition, offering practical healthy substitutions for common food and drink habits. The episode wraps up with Charlie sharing his personal and professional highlights and the future plans for expanding their inclusive fitness programs.Charlie Taylor is founder of the Foundation of Strength.   He started the foundation in 2019 to promote fitness in the special needs community.   He is a Jacksonville native and owned a security company (Security 101) until he retired in 2023.   He has been married to his high school sweetheart for 30 years, has 4 adult children and one granddaughter with his first grandson due in September.

In this episode of 'Rare Meat for Moms, host Meghan Weaver addresses the topic of sibling relationships within families with children with IDD or a rare diagnosis. Meghan shares practical family activities and one-on-one bonding ideas to help strengthen the bond with your other children by ensuring individual attention. Highlights include personalized family experiences like 'Tuesdays with the Brunettes,' one-on-one trips, and the benefits of shared and separate spaces for siblings. Plus, Meghan's 14-year-old daughter, Nora, joins in for a Q&A, providing insight into her experience and bonding strategies. The episode underscores the importance of balancing family activities and individual attention in a family dynamic that includes a child with special needs.00:00 Introduction to Rare Meat for Moms00:13 Strengthening Sibling Bonds03:24 One-on-One Time with Kids05:37 Family Vacations07:27 Q&A with Nora: Life with a Sibling with GAND25:44 Three Good Things and Conclusion

Essential Safeguards and Hacks for Parents of Children with Rare DiagnosesIn this episode of Rare Meat for Moms, host Meghan Weaver shares practical tips for keeping children safe at home. Meghan details five key safeguards: (1) a freezer door alarm to prevent food spoilage, (2) a secondary lock on the main entrance to control access, (3) a Ring spotlight camera paired with a Ring chime (4) a super wide adjustable baby gate to create safe play areas, and (5) an interior motion sensor with a plugin pager to alert parents if a child is on the move at night. Alongside the safeguards, Meghan also offers a handy travel hack using FaceTime as a monitor. She concludes with a personal reflection and three positive experiences that have recently uplifted her.00:00 Welcome to Rare Meat for Moms01:25 Five Personal Safeguards for Home01:35 Freezer Door Alarm03:56 Secondary Lock on Main Entrance05:26 Ring Spotlight Camera and Chime07:00 Adjustable Baby Gate and Play Yard09:01 Motion Sensor with Plugin Pager14:06 Three Good Things20:52 Conclusion and Final ThoughtsLinks:Freezer Alarm https://amzn.to/4aBCsu9Door Swing Bar Lock https://amzn.to/4gjS1IrWireless Caregiver Pager Motion Alarm https://amzn.to/40ElmaDExtra Long Fence Play Yard https://amzn.to/3PULIA4Ring Spotlight Cam Sensor https://amzn.to/3WETrpHRing Chime https://amzn.to/4hBWxTF

Meghan Weaver interviews Bradley Fisher, a dedicated teacher, father, and lifelong Chicagoan, about his experiences in adaptive cycling with his special needs daughter, Lillia. The discussion spans Bradley's journey from early biking adaptations for Lillia, who has GAND, to participating in inclusive bike camping adventures. They explore the process of making biking accessible and enjoyable for children with disabilities, touching on technical modifications, community support, and the emotional and logistical challenges involved. Bradley also shares the growth and achievements of the 'Out Our Front Door' organization, which promotes inclusive bicycle travel, and hints at future adventures. The conversation is filled with practical advice, personal anecdotes, and inspiring insights into overcoming obstacles and fostering a love for biking in children with special needs.Out our Front Door- Bike Camping for Everyone https://www.oofd.org/adaptivebikecamping.htmlKEEN Chicago- https://www.keenchicago.org/Adventure Cycling Association- https://www.adventurecycling.org/guided-tours/fully-supported-tours/idaho-trails-relaxed/Project Mobility- https://www.projectmobility.org/eSpecialNeeds- https://www.especialneeds.com/developmental-youth-trike-freewheel.htmlWalmart- https://www.walmart.com/browse/sports-outdoors/adult-tricycles/4125_1081404_1230089_7538787?povid=ETS_nup_bike_adultbikes00:00 Introduction to Bradley Fisher00:44 Bradley's Journey with Adaptive Biking01:30 Early Adaptive Biking Experiences04:18 Modifications and Community Support05:41 Finding and Transporting Adaptive Bikes09:37 Transitioning Through Different Bikes13:53 Learning to Ride Independently23:31 Inclusive Biking Adventures30:01 Challenges and Overcoming Hesitations37:15 Future Plans and Final Thoughts

In the final episode of 2024, host Meghan Weaver shares her top 10 toy recommendations that have been loved by her daughter Rowan and the entire family over the years. From VTech GoGo Smart Wheels to the Yoto player, these toys not only entertain but also support various developmental milestones and therapeutic needs. Meghan provides detailed insights on each toy's benefits and uses, making this episode a valuable guide for parents navigating the holiday shopping season. All toys can be found linked at www.MeghanWeaver.com Rare Meet for Moms will be back with new episodes and interviews in January 2025!00:00 Introduction and Episode Overview00:39 Top 10 Toys for Kids with IDD 03:00 VTech GoGo Smart Wheels05:27 Little Tikes First Slide07:35 Step 2 Grand Walk-In Kitchen and Grill09:53 Dress-Up Fun13:01 Disney Bath Toy Set14:31 Indoor Over-the-Door Swing16:41 Giant Uno and Family Games18:49 Outdoor Fun with Radio Flyer Ziggle20:05 Razor Rip Rider 36022:03 Yoto Player: The Ultimate Audio Book Toy27:14 Three Good Things and Conclusion

In episode 11 of Rare Meat for Moms, host Meghan Weaver discusses the complexities and emotional challenges of celebrating birthdays for her daughter Rowan. She reflects on the highs and lows of the past 11 years, shares personal tips for managing birthday celebrations, and outlines the unique hurdles like her daughter's fear of opening presents (Doronophobia). Meghan also talks about the importance of setting annual goals, the significance of small victories, and the support from her family in planning these special occasions. The episode concludes with Meghan's gratitude for past experiences and optimism for the upcoming 'golden' year as Rowan turns 11 on 11/11.00:00 Welcome to Rare Meat for Moms00:32 Reflecting on 11 Years of Birthdays01:25 Birthday Emotions and Challenges04:24 Navigating Doronophobia - The Fear of Opening Presents08:32 Creative Birthday Celebrations19:07 Three Good Things23:52 Conclusion and Encouragement

In this episode of Rare Meat for Moms, host Meghan Weaver shares her experience of raising a child with a rare genetic disorder and the importance of building a community for support. Meghan discusses the creation of her group, Gals Who Get It, designed for mothers of children with various diagnoses, and provides practical steps for starting a similar support group. She explains the benefits of such communities, the organization process, and the challenges and rewards of maintaining such a group. Meghan also highlights the value of genuine connections and encouraging listeners to foster their own supportive networks. Lastly, she shares a few personal uplifting moments and how listeners can connect with her for more insights.00:00 Introduction to Rare Meat for Moms00:14 Building a Community from Scratch01:09 Creating 'Gals Who Get It'02:46 Organizing and Growing the Group06:23 Navigating Challenges and Encouragement10:24 Personal Reflections and Final Thoughts13:01 Three Good Things and Conclusion

We are talking about tapping into the benefits of CBD for children with special needs. We explore trials, triumphs and daily life. Join us in this insightful episode as we follow Charissa Lynn, an experienced flight nurse, and mother, through her family's 8 year journey of using CBD to manage her son Tucker's behavioral issues, seizure medication side effects, and concentration difficulties linked to his GAND diagnosis. The discussion touches on the process of finding reputable CBD products amid regulatory challenges, dosage trials, and the effects of CBD versus THC. Experiences include using CBD in combination with pharmaceuticals like Keppra, managing medical procedures such as EEGs, and opening a world of possibilities with increased ability to focus. We also highlight daily progress, from practical independence skills like using a microwave to personal victories like enjoying nature and playing Mario Kart. This episode serves as a valuable guide for parents and caregivers navigating CBD treatments and advocating for their children's well-being.Charissa Lynn’s Bio: Charissa's son, Tucker, was diagnosed with GAND in the summer of 2015 when he was 4.5 years old. He was diagnosed with a missense variant. During the oncoming years, Charissa managed to get GAND in the database of the National Organization for Rare Disorders. She and her husband, Jerry, also became the biggest advocates and champions for Tucker. Charissa has over 20 years in Emergency Medical Services and 17 years in Nursing. She currently is employed as a Flight Nurse for StatMedevac and as an adjunct instructor for Pennsylvania College of Technology.  Her husband and her also are owners of JHL Violins, LLC.00:00 Introduction to Charissa Lynn and Her Journey02:08 Discovering CBD for Tucker03:44 Challenges and Initial Experiences with CBD07:48 Research and Choosing the Right CBD15:10 Administering CBD and Observing Effects21:07 Growth Spurts and Seizure Management26:52 Snack Time Routine28:47 Gaming Adventures with Tucker31:50 Neurologist Visits and Seizure Management39:35 CBD Journey and Its Impact42:52 Future Plans and Final Thoughts47:10 Three Good Things

In this engaging episode of Rare Meat for Moms, host Meghan Weaver offers a delightful mix of stories, recipes, activities, and hacks centered around eggs. She begins with a shoutout to listeners Abi and Annabel and shares a funny anecdote about her own daughter hiding farm fresh eggs. Meghan provides practical egg recipes, including hard-boiled, scrambled, and protein-boosting options, and highlights a portable meal prep tool. The episode includes tips for using Easter eggs in occupational therapy, fun activities with egg cartons, a sign language lesson, and as always, ends with her 3 Good Things. Tune in for creative and nutritious ways to incorporate eggs into your family's meals and activities.00:00 Welcome to Rare Meat for Moms00:16 Listener Shout Out: Abi and Annabel's Lobster Bisque Success01:08 All About Eggs: Stories, Games, and More01:56 Egg Story: The Great Egg Hunt04:32 Creative Uses for Easter Eggs Year-Round06:19 Egg Recipes and Hacks08:12 Versatile Pull Cord Mixer08:56 Mess-Free Scrambled Egg Bake09:43 Cottage Cheese in Scrambled Eggs10:22 Sneaking Protein into Kids' Meals11:20 Banana Pancakes: A Simple Recipe11:59 Eggs on the Go12:53 Oven Scrambled Eggs for a Crowd13:54 Creative Uses for Egg Cartons14:52 Fun Egg Sign Language15:31 Three Good ThingsDINKY DOODADS- Speech Therapy Trinketshttps://www.etsy.com/shop/DinkyDoodads?ref=shop-header-name&listing_id=699798258&from_page=listingInstantPot Hard Boiled Eggs Tutorial https://amindfullmom.com/instant-pot-hard-boiled-eggs/Pull Cord Food Processorhttps://amzn.to/3AgeSFxAdditional recipes and resources found at www.MeghanWeaver.comInstagram @rare.meet.for.moms

In this episode of 'Rare Meat for Moms,' host Meghan Weaver tackles the complex issue of managing tantrums in pre-adolescent children, particularly those with rare diagnoses. She draws on personal experiences and advice from an ABA therapist to share effective strategies, such as using a designated safe area and the 'blow your candle out' technique for calming. Meghan underscores the importance of consistency among caregivers and highlights the psychological challenges parents face. Megan invites listeners to join the community by sharing their parenting stories, combining practical advice with a sense of collective support.00:00 Introduction to Rare Meat for Moms00:13 Understanding and Addressing Tantrums00:37 Personal Experiences and Seeking Help01:16 Target Audience and Expectations04:06 Preparing for Challenges and Consistency05:29 Step-by-Step Tantrum Management07:47 Staying Strong and Consistent08:59 Handling Tantrums on the Go09:58 Consistency Among Caregivers10:54 Using ABA Therapy to Manage Tantrums11:47 Dealing with Mealtime Tantrums12:41 Final Thoughts on Tantrum Management14:44 Three Good Things17:40 Conclusion and Encouragement

In this episode of Rare Meat for Moms, host Meghan Weaver discusses the importance of intentional breaks and quality time between spouses, especially for parents with children who have rare diagnoses. Meghan shares her personal journey of planning getaways with her husband, Chris, despite facing challenges like finding reliable sitters and dealing with unforeseen disruptions. She emphasizes the need for more than a 24-hour retreat to properly unwind and reconnect. Meghan provides practical advice on securing trustworthy caregivers and suggests strategies for planning short and extended trips to rejuvenate relationships. Throughout the episode, she shares uplifting stories from her own experiences, encouraging other parents to continue planning and seeking opportunities for marital connection.00:00 Introduction to Rare Meat for Moms00:28 The Importance of Time with Your Partner01:48 Finding Trustworthy Caregivers04:21 Overcoming Challenges in Planning Getaways06:28 Three Ways to Find Time Away Together10:40 The Value of Longer Getaways15:00 Our Recent Trip Highlights21:32 Final Thoughts and Encouragement24:05 Three Good Things

Episode 005: Demystifying the Invisalign Process: Tammy Ruh on the Process & Benefits for Children with Special Needs | Rare Meet for Moms PodcastIn this episode, Meghan speaks with Tammy Ruh, a dental hygienist and special needs mom, about the challenges and strategies involved in managing her son's dental care, given his diagnosis of GAND (gatad2b associated neurodevelopmental disorder). The conversation covers various aspects from consultation to completion of treatment, including dental cleanings, the use of specialized toothbrushes, and the transition to Invisalign for orthodontic needs such as palette expansion and straightening. They discuss the importance of routine, the role of supportive school staff, and leveraging grants and pro bono services to make treatment accessible. The interview also highlights the success of early intervention and the benefits of having a committed orthodontist.Tammy Ruh bio: Tammy's son, Hudson, was diagnosed with GAND in 2016 when he was 2.5 years old. She served as secretary of the non-profit Helping Hands for GAND for 1 year and is currently on her 3rd year as Vice President. She feels that being involved in continuing to build the GAND community has been a rewarding experience and a position she feels honored to be in. Tammy is a practicing dental hygienist of 14 years and as well as a travel agent that specializes in helping special needs families. 00:00 Introduction and Welcome00:06 Challenges with Dental Hygiene01:19 Overcoming Dental Cleaning Obstacles02:47 Sedation and Dental Procedures04:22 Starting the Invisalign Journey07:03 Invisalign Treatment Process11:09 Success and Routine with Invisalign18:37 Encouragement and Final Thoughts22:45 Three Good ThingsResources:Orthodontic Grant  https://www.uhccf.org/apply-for-a-grant/Additional info @ www.MeghanWeaver.comInstagram @ Rare.Meet.For.Moms

Transforming Mealtime: Gamify Your Kids' Eating Habits!In this episode of 'Rare Meat for Moms,' host Meghan Weaver shares innovative strategies to gamify mealtime and tackle picky eating habits in children, including those with rare diagnoses and sensory issues. Meghan talks about her personal experiences with her three children, particularly her middle child who has oral motor planning challenges. She offers practical tips on how to make trying new foods fun and engaging for the whole family, from using simple tools like a piece of paper to create a 'food list' to encouraging friendly competition among siblings. Meghan's approach has been successful in making mealtimes less stressful and more enjoyable, and she emphasizes the benefits of this method for fostering a positive eating environment.00:00 Introduction to Rare Meat for Moms00:14 Gamifying Mealtime for Picky Eaters02:25 Setting Up the Game: Putting It on the List04:03 Encouraging New Food Experiences04:51 Adapting the Game for Special Needs05:34 Incentives and Rewards07:21 Creative Food Ideas and Tips16:30 Grocery Shopping Adventures19:22 Final Tips and 3 Good ThingsProducts:Autobrush https://www.amazon.com/dp/B0BZWNVLWQ?tag=meghanweave05-20&linkCode=osi&th=1&psc=1www.MeghanWeaver.comInstagram: Rare.Meet.For.Moms

In Part 2, we dive into the practical application of AAC (Augmentative and Alternative Communication) devices in the classroom. Meghan Weaver and Mindy Youngs, both mothers navigating the challenges of AAC for their children, share their extensive experiences. They discuss the importance of adequately trained staff, the role of paraeducators, and the necessity of real-time data to measure device usage. Mindy elaborates on the specific challenges her daughter Olivia faces using the LAMP Words for Life system in a school environment, and how they ensure it aligns with educational goals. This episode is a vital resource for parents and educators striving to effectively integrate AAC devices into educational settings.Mindy Youngs bio: At the age of 18 months, Mindy's daughter was diagnosed with a nonsense variant in the GATAD2B gene. Mindy helped launch the non-profit Helping Hands for GAND in September 2015 and served on the Board of Directors as Secretary for 4 years. Mindy continues to stay involved in the GAND community and is committed to helping create a sense of community for those affected by this ultra rare disorder. Mindy also brings over 20 years of experience in marketing and is currently Senior Director, Marketing for Procore Technologies. Resources shared in this Episode are linked below and at www.meghanweaver.com00:00 Introduction and Recap of Part 101:02 Challenges of Using AAC in Schools02:10 Training and Support for School Staff02:55 Importance of Language Development Stages04:40 Ensuring Proper Use of AAC Devices07:02 Classroom Settings and Inclusion12:37 Legal and Advocacy Tips for Parents20:55 Three Good ThingsResources: Browns Language Stages here:https://www.speech-language-therapy.com/index.php?option=com_content&view=article&id=33:brown&catid=2:uncategorised&Itemid=117Realize Language: Online Service to collect data when the device is usedwww.realizelanguage.com/info

Mindy Youngs bio: At the age of 18 months, Mindy's daughter was diagnosed with a nonsense variant in the GATAD2B gene. Mindy helped launch the non-profit Helping Hands for GAND in September 2015 and served on the Board of Directors as Secretary for 4 years. Mindy continues to stay involved in the GAND community and is committed to helping create a sense of community for those affected by this ultra rare disorder. Mindy also brings over 20 years of experience in marketing and is currently Senior Director, Marketing for Procore Technologies. In this episode, Meghan welcomes Mindy Youngs, a fellow GAND (GATAD2B-associated neurodevelopmental disorder) mom, to discuss their experiences with AAC (Augmentative and Alternative Communication). They share the journey of obtaining a diagnosis for their children, discovering support groups, and exploring various communication devices like Proloquo2Go and LAMP Words for Life. They delve into the importance of AAC assessments, modeling, and consistent usage to promote language development. They also highlight challenges such as insurance battles, the need for dedicated devices, and ensuring backup options. The episode ends with both moms sharing their appreciation for the support community and the positive aspects of their children's progress.00:00 Welcome and Introductions00:09 Early Diagnosis and Initial Reactions00:46 Discovering the Community01:23 First Conference and AAC Devices02:00 Prompt Speech Therapy and Device Comparisons02:58 Communication Strategies and Challenges13:35 Modeling and Empathy18:30 Resources and Insurance Tips28:36 Final Thoughts and Three Good ThingsResources mentioned:  A Voice Discovered: RESOURCE HANDOUT  https://nebula.wsimg.com/983f725dbfb784ac804de8add380ebbf?AccessKeyId=5D57B555CFC509675808&disposition=0&alloworigin=1A Voice Discovered: NATIONAL RESOURCEShttp://www.avoicediscovered.com/funding-resources-1.html Lilly's Voice: NEW GRANTORhttps://www.lillysvoice.org/AAC apps go on sale in October and April of every year but each app is on sale at a different time that month and for a different amount of time.  A good person to follow who does an app round up each time is Lauren Enders who is an AAC SLP and quite knowledgeable.  https://www.facebook.com/LaurenSEndersMaCccSlphttps://www.instagram.com/engagingaacslp/

This is an introduction to what I hope will be a put it all out there, let’s figure it out together, laugh or vent about the current state of affairs. This is also a glimpse into what my life looks like raising a child with GAND. This will be conversations with other special needs moms and dads, sharing what’s working and what’s not. This is the resource I want to see in the world so I am creating it. It’s another tool for your ever growing “not so typical” tool box. Let's get to the meat of it!