Essential Safeguards and Hacks for Parents of Children with Rare Diagnoses

In 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 Moms

01:25 Five Personal Safeguards for Home

01:35 Freezer Door Alarm

03:56 Secondary Lock on Main Entrance

05:26 Ring Spotlight Camera and Chime

07:00 Adjustable Baby Gate and Play Yard

09:01 Motion Sensor with Plugin Pager

14:06 Three Good Things

20:52 Conclusion and Final Thoughts

Links:

Freezer Alarm https://amzn.to/4aBCsu9

Door Swing Bar Lock https://amzn.to/4gjS1Ir

Wireless Caregiver Pager Motion Alarm https://amzn.to/40ElmaD

Extra Long Fence Play Yard https://amzn.to/3PULIA4

Ring Spotlight Cam Sensor https://amzn.to/3WETrpH

Ring 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.html

KEEN 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.html

Walmart- https://www.walmart.com/browse/sports-outdoors/adult-tricycles/4125_1081404_1230089_7538787?povid=ETS_nup_bike_adultbikes

00:00 Introduction to Bradley Fisher

00:44 Bradley's Journey with Adaptive Biking

01:30 Early Adaptive Biking Experiences

04:18 Modifications and Community Support

05:41 Finding and Transporting Adaptive Bikes

09:37 Transitioning Through Different Bikes

13:53 Learning to Ride Independently

23:31 Inclusive Biking Adventures

30:01 Challenges and Overcoming Hesitations

37:15 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 Overview

00:39 Top 10 Toys for Kids with IDD

03:00 VTech GoGo Smart Wheels

05:27 Little Tikes First Slide

07:35 Step 2 Grand Walk-In Kitchen and Grill

09:53 Dress-Up Fun

13:01 Disney Bath Toy Set

14:31 Indoor Over-the-Door Swing

16:41 Giant Uno and Family Games

18:49 Outdoor Fun with Radio Flyer Ziggle

20:05 Razor Rip Rider 360

22:03 Yoto Player: The Ultimate Audio Book Toy

27:14 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 Moms

00:32 Reflecting on 11 Years of Birthdays

01:25 Birthday Emotions and Challenges

04:24 Navigating Doronophobia - The Fear of Opening Presents

08:32 Creative Birthday Celebrations

19:07 Three Good Things

23:52 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 Moms

00:14 Building a Community from Scratch

01:09 Creating 'Gals Who Get It'

02:46 Organizing and Growing the Group

06:23 Navigating Challenges and Encouragement

10:24 Personal Reflections and Final Thoughts

13:01 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 Journey

02:08 Discovering CBD for Tucker

03:44 Challenges and Initial Experiences with CBD

07:48 Research and Choosing the Right CBD

15:10 Administering CBD and Observing Effects

21:07 Growth Spurts and Seizure Management

26:52 Snack Time Routine

28:47 Gaming Adventures with Tucker

31:50 Neurologist Visits and Seizure Management

39:35 CBD Journey and Its Impact

42:52 Future Plans and Final Thoughts

47:10 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 Moms

00:16 Listener Shout Out: Abi and Annabel's Lobster Bisque Success

01:08 All About Eggs: Stories, Games, and More

01:56 Egg Story: The Great Egg Hunt

04:32 Creative Uses for Easter Eggs Year-Round

06:19 Egg Recipes and Hacks

08:12 Versatile Pull Cord Mixer

08:56 Mess-Free Scrambled Egg Bake

09:43 Cottage Cheese in Scrambled Eggs

10:22 Sneaking Protein into Kids' Meals

11:20 Banana Pancakes: A Simple Recipe

11:59 Eggs on the Go

12:53 Oven Scrambled Eggs for a Crowd

13:54 Creative Uses for Egg Cartons

14:52 Fun Egg Sign Language

15:31 Three Good Things

DINKY DOODADS- Speech Therapy Trinkets

https://www.etsy.com/shop/DinkyDoodads?ref=shop-header-name&listing_id=699798258&from_page=listing

InstantPot Hard Boiled Eggs Tutorial

https://amindfullmom.com/instant-pot-hard-boiled-eggs/

Pull Cord Food Processor

https://amzn.to/3AgeSFx

Additional recipes and resources found at www.MeghanWeaver.com

Instagram @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 Moms

00:13 Understanding and Addressing Tantrums

00:37 Personal Experiences and Seeking Help

01:16 Target Audience and Expectations

04:06 Preparing for Challenges and Consistency

05:29 Step-by-Step Tantrum Management

07:47 Staying Strong and Consistent

08:59 Handling Tantrums on the Go

09:58 Consistency Among Caregivers

10:54 Using ABA Therapy to Manage Tantrums

11:47 Dealing with Mealtime Tantrums

12:41 Final Thoughts on Tantrum Management

14:44 Three Good Things

17:40 Conclusion and Encouragement