Headstands and Handwriting

With all the "big-ticket" issues associated with disabilities and rare disorders, it can be easy to overlook the small, seemingly random things people have in common.

This week, I was scrolling through a Joubert syndrome group on Facebook and saw a photo posted of a little girl doing something similar to what I'm doing in the photo above. My parents and I have always called them headstands, and I've seen other photos of kids with JS doing the same thing, So, I shared that photo and asked if any other kids do/did it. I was shocked and amazed by how many parents responded with their own headstand stories. There were even a few photos, which were awesome and pretty cute!

We never knew why I did it, but according to some comments on the post, it has something to do with sensory regulation and stability, which makes sense given other things I've learnt about Joubert syndrome.

Another example of something small turning out to be a big similarity to others with Joubert is handwriting.

Several months ago, this article circulated on social media. The article is about a man missing part of his brain, the cerebellum, how he functions without it, and what can be learned about the cerebellum's function because of it. The cerebellum is one of the main parts of the brain associated with Joubert syndrome. The syndrome's effect on the cerebellum can cause issues with tasks like coordination, learning ability and handwriting, apparently.

In the article, there is a photo with an example of the man's handwriting. Well, it's my handwriting too.

And, from the comments of a couple of parents in the Joubert community, it's THEIR kid's handwriting as well!  Kind of interesting.

I guess the takeaway here is don't hesitate to share the small details, regardless of how goofy or random they may seem. You might just learn as much from these as from the bigger things.

Cheers!