Empowered by Hope

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Welcome to our intimate chat about the tumultuous yet enlightening journey to acceptance when parenting special needs children. We, Ashlyn Thompson and Emily Whiting, invite you to join us as we navigate the ebbs and flows of acceptance, a state that we revisit on a regular basis, supercharged with hard-earned wisdom and grace. Listen to our personal tales of the trials and triumphs that have peppered the landscape of our own journeys to acceptance, time and time again.

This episode has us candidly discussing the unique challenges and joys we encounter as parents to children with special needs. We share how redefining "normal" and seeking support from even our pets, such as Ashlyn's new puppy Letty, can provide comfort during testing times. We also delve into "mastering" the art of being your child's primary caregiver, while simultaneously grieving the dream you thought parenting would look like.  As we venture further, we touch upon the importance of letting go of unrealistic expectations, the power of advocacy, and the significance of self-care, for both ourselves and our families.

Our conversation concludes on a hopeful note, underscoring the gifts of acceptance—the miraculous ability to love our children for who they are while finding joy amidst the chaos through our evolved perspective. We reflect on our personal journeys, the struggle to come to terms with our children's medical conditions, and the importance of maintaining a hopeful outlook even during challenging times. Embark on this journey with us to find understanding, comfort, and hopefully a sense of camaraderie.

Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon today: https://www.amazon.com/She-Charlotte-Emotional-Spiritual-Complexities/dp/1735401994/ref=sr_1_1?crid=3B8LVR7E5PLSH&keywords=she+is+charlotte&qid=1697506854&sprefix=she+is+charlotte%2Caps%2C152&sr=8-1

Subscribe to the Empowered by Hope podcast to receive alerts about new episodes and exciting updates from Charlotte’s Hope Foundation: https://charlotteshopefoundation.org/

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

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Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

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Do you ever find yourself wanting to ask your child's doctor(s) more questions, but find yourself holding back?  Today is all about arming you with strategies to take control of medical decisions for your child. We share how we confidently question our daughters' medical providers and expand on the importance of questioning  in our role as advocates. You'll learn how to push past  "white coat syndrome," weigh risks and benefits of treatments, and learn the value of hitting pause so you aren't rushed into a decision before you are ready. We highlight the importance of considering the impact of these decisions on your entire family and emphasize the necessity of choice in selecting your child's medical team. It's no secret both Emily and Ashlyn are big supporters of seeking multiple opinions when possible! So press play, prepare to be empowered by hope, and together, we'll navigate these challenging waters.


Get your copy of She is Charlotte: A Mother's Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon today: https://www.amazon.com/She-Charlotte-Emotional-Spiritual-Complexities/dp/1735401994/ref=sr_1_1?crid=3B8LVR7E5PLSH&keywords=she+is+charlotte&qid=1697506854&sprefix=she+is+charlotte%2Caps%2C152&sr=8-1

Subscribe to the Empowered by Hope podcast to receive email updates about new episodes and exciting updates from Charlotte's Hope Foundation (scroll down to see where you submit your information): https://charlotteshopefoundation.org/

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

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There is so much joy to be had in the midst of the chaos. That is the key takeaway as Emily K. Whiting shares a month in the life of pediatric complex care for her daughter Charlotte. 

As Emily recounts the last month's wild journey of outpatient appointments, ER visits, infections, unidentified excruciating pain episodes, fevers, DME orders, IVs, catheters, blood draws, ultrasounds, x-rays, prescription refills, side effect management and even a vacation snuck in there somehow, you'll get a sneak peak into the constant barrage of medical management for a child with complex needs. 

As Emily shares the sometimes overwhelming amount of issues that arise in Charlotte's care, she coaches listeners on how to find the joy in the midst of the chaos. 

In this episode you'll learn how to focus on a mindset that allows for reality and emotion, while also holding onto the positive aspects of the situation. Many listeners will relate to Emily's 'month in the life' because your life looks very similar. 

If you're looking for relatability and some help with your mindset about your life of pediatric medical complexities, this episode is for you! 

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

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On today’s episode, Ashlyn takes the reins while Emily navigates 12 big appointments for Charlotte crammed into 4 days. While Emily is greatly missed, this episode was so much fun to record with our 3 guests, DMI Experts & owners of Beelievability: Allie Watkins, OD OTR and Maggie Pisano, PT, DPT, along with their trusty therapy assistant, yellow lab Thistle.

The dynamic between Allie & Maggie is full of so much positive energy and passion, you can’t help but instantly be drawn to them and love their hearts for children with medical complexities.

The main goal is to introduce you to the groundbreaking therapy technique, Dynamic Movement Intervention (DMI). DMI is disrupting outdated views on therapy and the belief system that children will only achieve as much as their diagnosis says is possible.

Charlotte’s Hope Foundation and BeelievAbility share the belief that it should be up to the child to tell us what they can do and not let others such as geneticists, doctors, even other families navigating the same diagnosis, place limitations on them. DMI is all about embracing that thought process and supporting each child while challenging them to reach their highest potential. As Allie and Maggie say, “The first step is Beelieving.”

Allie & Maggie go on to explain the history of DMI and the core principles that make it so different from traditional occupational and physical therapy. They describe what an intensive session entails and why they often lead to many breakthroughs at a faster pace than traditional therapy. You will hear the helpful ways they guide parents to accept and embrace appropriate goals that are the best thing for their child at that time and how to celebrate every small win like they won the lottery.

With DMI being so new to the therapy field, many families travel across state lines seeking Allie and Maggie’s expertise. You can also view the resources below to learn how to find a certified DMI practitioner in your state. While DMI intensives are not yet covered by insurance, there are opportunities for grants that can be found by searching the web.

If you haven’t hit play yet, don’t wait another second – you are going to love this episode and walk away feeling invigorated and full of hope for the future of complex medical care for our children! Please help us share this podcast with as many people as possible so we can spread the hope.

BeelievAbility is an outpatient pediatric clinic founded by co-owners, Allie (Occupational Therapist) and Maggie (Physical Therapist). We offer intensive therapy utilizing dynamic movement intervention (DMI) as a main treatment tool. Our mission is to greatly improve a child’s quality of life and empower families in a safe and caring environment. Our goal is to never give up on a child’s potential and to help guide them to reaching their greatest abilities. The first step is Beelieving.

Socials: @beelievability instagram/facebook/tik tok

website: www.beelievability.com

The foundation we are on social media is:

@lightforlevi facebook and instagram

website: www.lightforlevi.com

DMItherapy.com – Select Registered Practitioners from the top menu to search by location. Make sure a practitioner is at a level C or higher if you wish to pursue an intensive for your child.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

Send us a text, we want to hear from you!

Have you found yourself in the grasp of complete overwhelm & despair at least once (or maybe hundreds) since receiving the shock of your child's medical challenge(s)? Does it feel impossible to find joy and acceptance in the midst of chaos and heartbreak? Join us, as we candidly share our personal journeys to acceptance, full of ups and downs, and the many surprising gifts we never could have imagined. Personal experiences, reflections, and lessons learned are laid bare, offering insights that are not only enlightening but also inspiring.

Our discussion touches on the importance of acceptance, advocacy, balancing expectations, and how adapting to new roles and realities can be REALLY hard . Hear our stories of how we have come to embrace acceptance, redefining norms, and the power of letting go of perfection. Our hope is to help you understand that acceptance is not just about coping, but it's about transforming our perspectives and growing in the process. We share how the beauty of acceptance has allowed us to understand our children's needs better and become more assertive in medical situations.

Lastly, we explore the freedom of embracing imperfection and letting our children explore life. Balancing parental support and a child's independence is crucial, and we talk about how acceptance plays a significant role in this. We underscore the importance of being kind to ourselves and having a strong support network. On this journey, celebrating our children's strengths and seeking support when needed becomes an important aspect of acceptance. So, join us on this enlightening journey of acceptance, transformation, and finding joy even in the most challenging situations.

Additional resources:
For more information on acceptance, we recommend looking into  Nobody’s Perfect: Living and Growing with Children Who Have Special Needs by author, Dr. Nancy Miller.

Parent to Parent USA: Our mission is to support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.
https://www.p2pusa.org/

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

Send us a text, we want to hear from you!

1. The first foundation newsletter will be shared out in the next couple weeks, providing an overview of the wins and progress the foundation has made and overview of next steps. Email [email protected] with your name, email, and address if you would like to receive a copy of the newsletter or subscribe to the podcast on our website to be added to our email list.
2. Mark your calendar for the inaugural Celebration of Hope event, to be held on May 4th, 2024 in Wooster, OH. More details to come over the coming months!
3. Since the release of episode 21: Charlotte Has a Diagnosis, numerous families have reached out to connect with the foundation and Emily over their shared diagnosis of Hardikar Syndrome for their child. 

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

Send us a text, we want to hear from you!

Are you grappling with the added logistics of raising a medically complex child? Yeah. Us too. 

How do you keep track of countless appointments, medications, treatments, therapies, and durable medical equipment (DME) orders? What resources are out there to help parents and caregivers stay organized and not lose their sanity? Meet our returning guest, Lily Brown from Parent to Parent USA, who shares what she fondly calls "brutally practical tools" and resources to simplify and support the caregiver's life.

In this conversation, Lily shares tips, tools and organizations which have helped her in her personal parenting journey, and which might help you, too. Some of the tools mentioned include: 

• Stages of adaptation 
• Parent to Parent USA 
• Parent Training and Information Centers, 
• Project Sunshine, 
• Hear Your Song
• Personal Kanban
• She is Charlotte

This list is by no means exhaustive, but barely scratches the surface of the many tools available for those raising children with complex medical needs. 

Wrapping up the episode, Emily and Lily discuss the book She is Charlotte, and how Emily transformed her real-time journal entries into this detailed book about her personal medical parenting journey. There's immense value in connecting with and learning from other parents who have shared experiences. This conversation is woven with practical advice, shared experiences, and endless compassion and understanding—a conversation that promises to leave you better equipped for the journey ahead. So, join us, listen in, and remember that you are not alone.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

Send us a text, we want to hear from you!

Ashlyn introduces her own personal support systems, her trusted therapist, who is rose loving, and an aspiring stick figure artist (not really, but she could be!), Chelsea Cassel.  We unmask the often overlooked truth—caregivers and parents are also victims of trauma, even when they are not the direct recipients of a traumatic event. In this discussion we navigate the murky landscapes of trauma, grief, and guilt, shedding light on the varying reactions to trauma across genders. Our exploration of pain triggers and the necessary practice of processing traumatic experiences opens the doorway to how we can begin the healing process.

Between the two of us, we dig deep into the realm of emotional processing. Chelsea, with her expertise as a Marriage and Family Therapist, guides us through the healing potential of journaling, scheduling time to process, and being compassionate towards ourselves. We contemplate how trauma can take the reins of our lives, seeping into our everyday routines, and how essential it is to take back control. Towards the end of the episode, we touch on the liberating power of acknowledging our traumas and how to move forward when our bodies harbor memories that our minds might not recall.

We stressed the importance of not minimizing our experiences and admire the resilience that emerges from this process. We explore the power of self-dialogue and encourage listeners not to shy away from seeking professional help. Chelsea and I conclude by emphasizing the healing force of support and connection, advocating for self-care and self-expression. This emotional odyssey, laden with insights and revelations, is an invitation to us all. Come, join us, as we traverse this uncharted terrain together so we can take the necessary steps to free us from the strongholds of "trauma brain" and be the best advocates for our children while reclaiming our own lives. 

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

Send us a text, we want to hear from you!

Do you ever feel like you’re barely surviving while raising a child with medical complexities? You’re not alone. Join us as we connect with Lily Brown from Parent to Parent USA, a parent herself, who shares her personal journey and the transformative stages of adaptation that often come with this unique role. These stages, as identified and written about in Dr. Nancy Miller's (PhD, MSW) book Nobody's Perfect: Living and Growing with Children who have Special Needs, are so very relatable to those seasoned parents of children with medical complexities. For those who are new to the journey, the stages provide context to what you're experiencing.

We kick things off by diving into the initial stage of ‘surviving.' Dr. Miller says it best in her book, "being in a state of Surviving doesn't last forever. It just seems that way at the time." One NICU mother's reflection describes it well, "there was so much grief ... It was like a death, but no one had died."

Then comes the 'searching' stage where a parent moves into action, purpose, and the quest for control. Lily shares her insights on transitioning into the ‘settling in’ stage, a calm after the storm where new routines emerge and a different sense of stability is established. 

Then comes stage 4: 'separating.' Often as parents of children with medical needs, setting them up for successful independence from you comes with added obstacles and even severe limitations. We reflect on the vital role of introducing children into conversations about their medical care and its empowering effect. We emphasize the importance of recognizing our children’s capabilities, fostering their independence, and celebrating small victories in parenting.

We discuss the importance of understanding each stage, how it can offer resounding support, and provide a sense of shared experience that can fast-track bonding between parents on a similar journey. Lastly, we signpost you towards Parent to Parent USA, a resourceful compass for parents navigating similar terrains.

So, tune in, gain insights, and perhaps discover a new perspective on your journey.

For reference: 

The Four Stages of Adaptation Are: 

1. Surviving

2. Searching

3. Settling In

4. Seperating 

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon 

Send us a text, we want to hear from you!

What if you could navigate the emotional landscape of raising a medically complex child without being consumed by guilt? Join us as we journey through such a life, reflecting on our victories, challenges and the invaluable lessons we've learned along the way. We talk about maintaining confidence amidst adversity, finding the right feeding methods, preventing urinary tract infections, and dealing with hearing and vision issues - a testament to the resilience all parents must embody.

From managing ostomy bags to celebrating our children's milestones, we explore our lives with raw honesty. We shed light on the crucial role of medical professionals and the importance of their advice in our decision-making process. We reveal the strides being made by the Empowered by Hope Foundation, discussing the milestones and updates from our personal lives - always celebrating the power of hope and resilience.

We dive into a candid discussion about the role of guilt in our lives as parents of medically complex children. We share our coping mechanisms, how we let go of self-blame and how we let research guide our decisions. We emphasize the need to confront guilt constructively, maintaining perspective, setting an example for our children and building resilience. Join us on this journey, find hope in our shared experiences, and be reminded that you are capable, equipped, and not alone.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon