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Stronger Every Day: For Parents of Children with Rare Diseases

You're a parent or caretaker of someone with a rare disease. It's crazy hard, but you can handle all the challenges that come your way, and Bo Bigelow will show you how.  Bo Bigelow is the father and primary caretaker of Tess, age 14, who has a rare genetic disorder that causes nonverbal autism, communication disorders, and epilepsy. Bo is an award-winning speaker, writer, filmmaker, and advocate for people with disabilities. He is also a practicing disability-rights attorney. Whether speaking up for Tess's education, navigating appointments and insurance coverage, or simply making Tess seen and known, he's developed tons of actionable tips to help you crush it and get it all done, without losing your own sanity and identity.   Bo is a co-founder of DISORDER: The Rare Disease Film Festival and The Disorder Channel. Over the years, he's told Tess's story to NPR, NBC News, ABC News, The Washington Post, and The Atlantic.
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Stronger Every Day: For Parents of Children with Rare Diseases
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Now displaying: Page 1
Oct 1, 2024

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2

Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?

Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overwhelming. This episode is filled with practical strategies that address the difficulties you face on the road, from getting power and internet to breezing through rental car lines.

- Adjust your mindset about power and internet, so you're ready for anything when you need to get work done on the road.
- Learn about two travel programs that can save you time and money.
- Hear about a special kit that I designed to optimize sleep for your whole family when you're away from home.

Tune in now and get the hacks that will transform your next travel experience into a calm and enjoyable adventure!

Oct 1, 2024

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2

Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?

Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overwhelming. This episode is filled with practical strategies that address the difficulties you face on the road, from managing long car rides to breezing through airport security.

- Discover two easy steps to prepare for a smoother trip, no matter what obstacles arise.
- Learn about a little-known service that can turn stressful airport experiences into a worry-free process.
- Get recommendations for budget-friendly travel products that ease your journey, from driving to flying.

Tune in now and get the hacks that will transform your next travel experience into a calm and enjoyable adventure!

How to Personalize Apple Headphones Using the Mimi Hearing Test App:
https://mimi.io/how-to-personalize-apple-headphones-using-the-mimi-hearing-test-app

Sep 22, 2024

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2

Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions?

For parents of children with rare diseases, balancing nutrition while managing symptoms like GERD and eczema can be overwhelming. In this episode, I dive into how we've customized Tess's diet over the years, using scientific research to guide our choices and making practical tweaks to keep her feeling her best.

1. Learn how specific foods, backed by scientific studies, can help manage common symptoms like reflux and inflammation.
2. Discover which simple dietary adjustments can improve digestion and prevent food sensitivities from disrupting daily life.
3. Get practical advice on using nutrient-dense foods and healthy fats to keep your child satisfied and energized longer.

Don’t miss out on these essential tips--play this episode now and start optimizing your child’s diet today!


SCIENCE! 

"Gluten and FODMAP Relationship with Mental Disorders: A Systematic Review" 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8228761/
Aranburu E, Matias S, Simón E, Larretxi I, Martínez O, Bustamante MÁ, Fernández-Gil MDP, Miranda J. Gluten and FODMAPs Relationship with Mental Disorders: Systematic Review. Nutrients. 2021 May 31;13(6):1894. doi: 10.3390/nu13061894. PMID: 34072914; PMCID: PMC8228761.

"Vegan Diet and Dermatology: A Review" 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10531971/
Lee H, Sim N, Fotouhi A, Daveluy S. Vegan Diet in Dermatology: A Review. J Clin Med. 2023 Sep 6;12(18):5800. doi: 10.3390/jcm12185800. PMID: 37762741; PMCID: PMC10531971.

"Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD)" 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11347905/
Khan M, Shah K, Gill SK, Gul N, J JK, Valladares V, Khan LA, Raza M. Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD). Cureus. 2024 Jul 27;16(7):e65552. doi: 10.7759/cureus.65552. PMID: 39192902; PMCID: PMC11347905.

Sep 17, 2024

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2

Have you ever wondered if a simple change in diet could dramatically improve your child’s cognitive function and overall health?

As a parent of a child with a rare genetic disorder, you’ve likely faced numerous challenges in managing their symptoms. This episode shares a real-life story of how a specific diet helped address multiple issues, from eczema to cognitive awareness.

1. Learn about the diet that transformed Tess’s life by improving her skin, GI symptoms, and cognitive engagement.

2. Discover the step-by-step process of eliminating certain foods and the remarkable effects it had on a child with rare disease.

3. Gain practical insights into how dietary changes can positively impact other children facing similar challenges.

Hit play now to hear how a simple dietary adjustment changed everything for Tess and how it could benefit your child’s health too!

Sep 10, 2024

From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your Child

What do you do when people stare at your child with a rare disease? How can you turn that awkward moment into an opportunity for connection?

If you've ever felt uncomfortable or angry when strangers or even loved ones don’t know how to interact with your child, this episode will help you shift your mindset. By assuming good intentions and leading with compassion, you can turn difficult moments into chances to educate and connect.

1. Learn how to handle public interactions when people stare at your child.
2. Discover ways to guide friends and family to better support your child's unique needs.
3. Find out how taking the lead in these situations fosters deeper understanding and inclusion for your child.

Hit play now and learn how to create meaningful connections with both strangers and loved ones when navigating life with a child who has a rare disease.

Sep 3, 2024

Are you looking to get organized and level up your productivity?

With the arrival of autumn, many of us feel the urge to hit the reset button and get our homes and lives back in order. But managing the influx of documents, communications, and daily tasks can be overwhelming, especially for parents balancing the unique challenges of caring for children with rare diseases.

Discover powerful tools to tackle document clutter, so you can regain control over your household.
Learn expert strategies to streamline your communications, making sure nothing slips through the cracks.
Equip yourself with the ultimate organization techniques to stay prepared for whatever life throws your way.

Tune in to this episode now to transform your chaotic fall into a season of calm and productivity!

David Friedman's how-to guide for opting out of snail mail, from his newsletter Ironic Sans. 

Aug 27, 2024

Empowering the Neurotypical Sibling

Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease?

This episode dives into how you can shift your mindset to see the hidden benefits your neurotypical child gains from growing up alongside a sibling with a rare condition, helping you address the common concerns of feeling overwhelmed or guilty.

  1. Learn how to reframe challenges into growth opportunities for your neurotypical child.
  2. Be a sturdy parent, as Dr. Becky Kennedy describes in her excellent parenting book Good Inside
  3. Discover the "carve out" technique to ensure your neurotypical child receives the attention and experiences they need to thrive.
  4. Understand the long-term emotional intelligence and resilience your child develops in this unique family dynamic.

Don't miss out—press play now and give your neurotypical child the gift of emotional growth and resilience today!

Aug 17, 2024

Quick update about Miss Tess and her adventures at summer camp. 

Aug 17, 2024

How could you change your mindset about taking your child with a rare disease to the doctor?

Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others.

1. Enlist two types of co-pilots for visits to make sure you don't miss anything.

2. Trust yourself, since you know your child better than anyone.

3. Hear from Harvard-educated pediatrician Dr. Bell about the best ways to help your doctor help you.

Tune in now to gain these actionable tips to make the most of doctor visits! 

Aug 6, 2024

Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor?

Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode tackles practical strategies to streamline these visits, ensuring your child's needs are met without leaving you completely drained.

1. Discover simple, time-saving tips you can implement from home to reduce stress and make doctor visits smoother.
2, Learn about a vital tool that will keep everyone informed and aligned on your child's medical care, simplifying communication.
3. Find out how to enlist a key partner who can help you navigate the complexities of medical care, ensuring no detail is overlooked.

Listen now to gain these essential tips and partner insights, and make your next doctor visit less stressful and more efficient!

Jul 30, 2024

Are you worried your child might be struggling with social interactions or communication, and wondering if it could be autism?

Navigating the challenges of parenting or caregiving can be overwhelming, especially when it comes to understanding and addressing potential developmental disorders like autism. This episode explores how to identify signs of autism, the steps to get a diagnosis, and why early intervention is crucial for setting your child up for success.

By tuning in, you'll:
- Gain a clear understanding of autism spectrum disorder, including key signs to watch for in social interaction, communication, and behavior.
- Learn practical steps to obtain a diagnosis, including free resources and expert insights from a pediatrician.
- Discover the importance of a diagnosis for accessing vital educational services and support that can significantly benefit your child's development.

Listen to this episode now to equip yourself with the knowledge and tools needed to support your child's journey with autism!

Jul 22, 2024

Health Insurance: 7 Tips to Beat the Insurance Company and Get Your Family's Bills Covered

Have you ever felt like navigating insurance claims for your child with disabilities is a full-time job?

As a parent or caregiver of a child with disabilities, you’re likely dealing with an overwhelming number of medical appointments and insurance claims. This episode addresses how you can simplify this process and ensure you get the coverage you deserve without the added stress.

1. Learn about two smartphone apps that can save you hours and help you stay organized with your insurance documents.
2. Discover the story of how shaming an insurance CEO led to top-level assistance and how you can leverage similar tactics.
3. Find out who your most powerful allies are in navigating insurance claims and how to get their support.

Hit play now to uncover these seven actionable tips and make your insurance company work for you!

Jul 16, 2024

Are you ready to navigate the complex world of special education and become the best advocate for your child?

This episode (part 2 of 2) dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you’re seeking ways to better support your child’s educational journey and ensure their rights are upheld, this is a must-listen.

By tuning in, you will:

- Gain 25 actionable tips to empower both you and your child in the special education system.

- Learn the critical importance of record-keeping and effective communication with your school district.

- Discover valuable free online resources and strategies for finding the right educational advocate or attorney.

Empower yourself and your child today—hit play and start your journey towards becoming a stronger advocate!


In this episode you'll discover:  

- inclusion, how to measure it, and why it matters
- why "extra time as needed" on tests and quizzes is as useless as a rubber crutch
- how to engage with your pediatrician and make them your strongest ally for your child's schooling

Jul 9, 2024

Are you ready to navigate the complex world of special education and become the best advocate for your child?

This episode dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you’re seeking ways to better support your child’s educational journey and ensure their rights are upheld, this is a must-listen.

By tuning in, you will:

- Gain 25 actionable tips to empower both you and your child in the special education system.
- Learn the critical importance of record-keeping and effective communication with your school district.
- Discover valuable free online resources and strategies for finding the right educational advocate or attorney.

Empower yourself and your child today—hit play and start your journey towards becoming a stronger advocate!

In this episode you'll discover:  
- why it's critical to keep records of your communication with your school district
- my secret weapon for ALL my meetings (not just education ones)
- online resources you can access for FREE  about all aspects of education
- how to find an education advocate/attorney in your area 
- the best language to use in your conversations with educators
- why good grades in school aren't the only measure of successful education
- why and how to talk to other parents in your school district
- the weakest word and why you should never use it 

Jul 2, 2024

I have watched you on the shore, standing by the ocean's roar. Do you love me? Do you, surfer girl?

Shout-out to Special Surfers, a non-profit organization sharing the empowering experience of surfing with children and adults with special needs of all diagnoses. specialsurfer.org 

 

 

Jun 25, 2024

One day, in a nondescript office building in Portland, three adults give something to Tess. And she comes alive.

Jun 19, 2024

Taking some time this week to reflect on community. The one we've built and continue to build, and what it means for Tess and our family.

Jun 12, 2024

If you have a kid with disabilities, your life is full of stuff you'd perhaps rather not do. Go to a million appointments, wind up in hospitals, deal with paperwork. But there are three letters that create more dread than nearly everything else.

Jun 4, 2024

I'm in the bleachers at a field. I watch two opposing lacrosse players collide with a massive crunch that's audible from the stands. Many parents gasp. I don't. I just watch in dismay and disbelief.

May 28, 2024

If you're trying to cure a rare disease, there are two tools that you can't live without.

May 21, 2024

It's a common problem in our house. A certain young lady who gets cuts from time to time. And who hates Band-Aids more than anything.

May 15, 2024

I want to tell you a story this week of someone who grew up here in Maine. I've gotten to know him over the past few months, and he recently raised his hand, boldly stepped forward, and made a massive difference for Tess and our foundation.  

May 6, 2024

To quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.

Apr 30, 2024

More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica. 

Apr 23, 2024

It's time. It's time to take Tess out of the United States and into another country.

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