Stronger Every Day: For Parents of Children with Rare Diseases

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

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

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

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.

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.

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.

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

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.

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.

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