Stronger Every Day: For Parents of Children with Rare Diseases

You're muted. Those two words. Part of every zoom call you've ever been on, amirite? If you're on mute, no one can hear what you're saying. Except this one time. Someone definitely heard. More about Tess's Mixed Receptive-Expressive Language Disorder . And a day when she busted right out of it. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types...

I recently had more time away from Tess than I've had in several years. Upon my return, we decided to listen to a distant city together. Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The...

Tess has a certain favorite activity . She's loved it for years. But as soon as you start doing that activity with her, she shuts it down. What is up with this? What happens with Tess and books ? Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. A...

Another year, another IEP team meeting. Our Tess is in sixth grade, and we learned something new. Something that we shoulda known a long time ago. Why isn't there a SportsCenter-style clip show for the best IEP moments? Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video ver...

Life with this disease can be pretty overwhelming for families. Especially on that day you first get your diagnosis. If that's you, and this is that day, you've come to the right place . This episode is a great starting point if you or someone you love has just been diagnosed with Hao-Fountain Syndrome or USP7. Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseas...

We're on a mountainside . Tess is raring to go, to get going on skiing once again. Dressed and ready. How does she do? This episode includes: a great escape , some laughs, and another installment of Where Does It Go? Stronger Every Day is sponsored by  The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versi...

A snowstorm blankets Maine. And one of Tess's favorite places opens back up for business.  Sit back and I'll tell you all about Tess skiing with Maine Adaptive , on a mountaintop. Ever thwarted by car key gnomes? Yeah, me too. This week: a brand-new segment called WHERE DOES IT GO??? Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabi...

There are times when Tess becomes a ball of tension. Jaw clenched. Brow furrowed. Fists of fury. How can we help her chill out? When Tess is tense, it affects everything--her mood, posture, and behavior. We're looking for ways to help her relieve that tension. Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film an...