Shannon Des Roches Rosa

Sometimes Autism Means Missing Important Family Events

Baby Leo and toddler Iz with their beloved auntie[image: two part-Portuguese little kids with their olderPortuguese auntie, sitting together on a floral print sofa.] The funeral for Seymour's wonderful aunt is in a few days. He and the girls and I are going, but Leo is staying home.I wish things were different, for Leo's sake and for ours, but this is our reality, and I think more families like ours need to know it's OK to talk about being sad about missing family events—as long as we also acknowledge that when autism is the reason, that's just the way your life looks. It's not an opportunity for blame or resentment ....more

The Key to Our Happy Life: Autism Acceptance

This Thursday 5/25 I'll be onstage in Oakland at the very worthy social justice storytelling event Listen for a Change, talking about why autism acceptance matters, from my (parent) perspective. If you're local, you should come! Tickets are free, donations are optional but appreciated, and it always reaches capacity ....more

Skooging!

Our lucky young man was recently gifted a Skoog, a Bluetooth musical device that syncs with an iPad to play music through its squishy tactile interface. Leo LOVES it, as you can see, and enjoys playing it with hands, elbown, and even his chin. [video description: Leo, a white teenage autistic boy, sitting at a kitchen counter, playing music with a Skoog: a semi-squishy cube that connects to an iPad and plays a different musical notes when each of its different sides are squeezed.] While the setting in the video is for eerie reverb music, the available musical styles are many -- and the Skoog app can even play music from the iPad's iTunes library so the user can bop along on the Skoog to favorite tunes ....more

Truly Awful Pseudoscience: Jill Escher's "The Autism Matrix."

San Francisco Autism Society president Jill Escher recently used that society's website to publish "The Autism Matrix," an opinion piece about what she considers "the autismS." Its most prominent feature is a graph of photos of autistic people Escher has categorized not by any legitimate means, but instead by what she assumes their abilities to be. Reader, please know: this is not only horrifying, but also not how valid autism information works.Since unsuspecting readers may assume that being published on an official autism organization site lends Escher's "analysis" legitimacy, let me tell you why The Autism Matrix is in fact a steaming pile of hostility, hubris, pseudoscience, and ignorance.Short Version of Why "The Autism Matrix" is Bunk Once Escher took over as President of the San Francisco Autism Society of America—an organization that does not bother including or working with autistic people themselves, by the way—she began to publish whatever she pleased on the org's blog. But her writings are not representative of the Autism Society's or even her branch's outlook, as per the disclaimer the national branch insisted Escher put on the blog after they began receiving complaints about her negative and misleading postings ....more

On World Autism Acceptance Day: How to Find Good Writing By Parents

Sitting on Rocks Is a Legit Thing....more

Reporters: Stop Excusing Murders of Disabled Children, FFS

While the internet is often a black hole, and articles published online can fade away after a news cycle or two, rarely to be read again, it is also a holding tank from which outdated and harmful articles can easily be retrieved. Case in point: A filicide-excusing article from 2008, by Nancy Lofholm of the Denver Post, is apparently making the parenting group rounds again -- and being shared with approval, damn it all.Since the article does not have comments, and my email to the writer bounced, I'm posting my response here:----Hello Nancy,I read your article on Autism's Terrible Toll with some dismay. I am the parent of a high-support, non-speaking autistic teenager, Leo, and I really worry that articles like yours are doing families like mine a disservice by making murder of autistic people—that is, my Leo—seem somehow understandable.I don't believe you mean harm, quite the opposite ....more

Happiness Is Resistance: Disneyland Version

We're still trying to visit Disneyland every year: Leo remains a huge fan, and making him happy usually means universal family happiness. And also because, given the current administration's dog-in-the-manger attempts to make everyone who is not a lock-step loyalist miserable, choosing to do things that make us happy is a form of resistance. [image: J, a white tween girl,sitting and reading at a tableoutside in Tomorrowland.] And we were happy at Disneyland, mostly ....more

The Boy Who Can No Longer Have Green Straws

Sadness.[image: photo of Leo reaching for a greenstraw at Starbucks, even though he knowshe shouldn't have one -- and why.] What you see to your left is a very, very sad young man.After years of finding solace and calm in his beloved green straws, it turns out that chewing on those straws exacerbates a chronic headache issue. They don't cause the headaches, but they do make them worse. Which means that Leo shouldn't have green straws any more.As with most matters, he is being a good sport about the green straw restriction ....more
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