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Stronger Every Day

You're a parent or caretaker of someone with disabilities. 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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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.

Apr 11, 2024

We have a saying in our house. We talk about "the age of independence". And yes, there are some eyerolls from our kids, but we push them to do stuff for themselves.

Apr 9, 2024

A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?

Apr 2, 2024
You're busy. Sometimes you think about how busy you were a year ago and think wistfully--man, that wasn't busy at all compared to now! But in spite of this busyness, there's something that's required from all Hao-Fountain patients. 
 
If you need to donate to our biorepository because you haven't yet, email me here: bo [dot] bigelow [at] gmail.com. 
 
Buzzy - personal vibrating ice pack for easier shots for kids. Order on Amazon here
Mar 27, 2024

I always tell you I got more questions than answers. But this week, I've come up with an answer. And it's helping me every single day. 

Mar 20, 2024

Student-athlete Tess. She's been on a team this winter through her school, and we've just come off a massive, colossal celebration of the whole shebang.

Mar 12, 2024

Sometimes when you're on the road, your plans go out the window. You have only a fraction of the stuff you need. But something unexpected comes up. And you have to MacGyver a solution.

Mar 5, 2024

Tess has this thing. It's not a superpower, but a way of seeing the world. The best way to describe it comes from a movie from 1982. 

Feb 27, 2024

Tess has developed a new habit. It's about her breathing. And it seems like she may be trying to tell us something.

If you're from the Hao-Fountain community and you see behaviors that you're working to address, give me a shout:  bo.bigelow@gmail.com

 

 

Feb 20, 2024

If you're like me, you're bombarded these days with articles all about the importance of regularly getting good sleep. My wife and I would do this if we could. But instead, we have children. 

Feb 14, 2024

I have aged. Since the last time we were together, I've passed the half-century mark. And I have a few thoughts for ya.

Feb 7, 2024

Come spend a day on a snowy peak here in Maine. Come watch our Tess as she puts on her ski coat and hits the slopes once again.

Jan 30, 2024

We're basketball fanatics in our house. And when I say we, I'm including Tess. 

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