Tag: Shannon Des Roches Rosa

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Disability

Understanding Autism Acceptance: A Parent’s Perspective

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Shannon Des Roches Rosa  www.squidalicious.com Sometimes I think I like sameness more than my son does. That’s why a persistent hindrance to increased independence for autistic kids like my son Leo is parents like me overlooking opportunities for self-care and competence. Sometimes this happens because we find it quicker and easier to take care of breakfast preparation or our kids’ tooth brushing ourselves, sometimes because in our day-to-day rush we forget to check in and see if new skills have emerged. It takes effort and vigilance to give Leo the chances he needs to demonstrate competence. Like this past weekend, when Leo asked me for mango juice. I was about to pour it for him, but instead stepped back and asked if he wanted to pour it himself. Which he did! He even put the lid back on the carton (a twisting/screwing motion) with one hand while drinking his juice…

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Disability

Does Your Area Have Disability-Friendly Museum Days?

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Shannon Des Roches Rosa   www.squidalicious.com    Parallel exploration is a very reasonable and comforting way to socialize We’re not a family that stays home. We’re a family of excursioners. Still, there are places my eleven-year-old son adores yet which we avoid completely, because our usual techniques of “go early or go off season” can’t guarantee him a good time. One of those local places is the sensory and exploration wonderland known as the Children’s Discovery Museum of San Jose — there is no time in which it is not thronging with tiny shrieking moppets, and kids Leo’s age are generally perceived as Too Big. Which is why I am so glad the CDM recently held their second after-hours Play Your Way event — essentially a private party for Leo and his crew. As my co-editor Jen Myers wrote about the evening at Dandelion: “It is an almost obstacle-free evening…

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Disability

Yes, You May Approach the Short Bus

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Shannon Des Roches Rosa www.squidalicious.com What I want people to know—and why I write—about parenting my autistic son   Photo © Jonathan Mandel [image: A white mother with orange hair holds a toddler  on her hip while standing with a young child, as a third child emerges, smiling, from a school bus.] When I realized my middle child was autistic and therefore disabled, I had a visual epiphany similar to the wide-eyed new parent who suddenly sees babies everywhere—except I saw short buses. Short buses. The kind of yellow schoolbuses that take kids like my autistic son to and from school every day. They’re everywhere, and if you don’t believe me, take a tally the next time you drive around any reasonably-sized town. Then think about all the kids who must be riding on those buses, and those kids’ parents and families. Think about all the kids who used to…

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Disability

Autistic Lives: Not Less Valuable

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Shannon Des Roches Rosa www.squidalicious.com www.blogher.com Two days ago, Patricia Corby was ordered to stand trial for the murder of her four-year-old autistic son, Daniel Corby. During testimony, the local District Attorney’s Office Investigator said that Corby “…felt like she had no life. She wanted Daniel to be normal.” This seems like a good time to revisit the post below, which I wrote for BlogHer.com after another Autistic, George Hodgins, was murdered by his mother Elizabeth — just three weeks before Daniel died. —- Obviously, I’m feeling angry and confrontational. Explosively so. With good reason: George Hodgins, a young autistic man from my son’s school, was murdered by his mother Elizabeth (who then committed suicide) earlier this month. Mainstream media reports have focused almost exclusively on how difficult life was for his mother, framing parents killing disabled children as an understandable tragedy, while parents killing typical children is considered a…

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Disability

On Gratitude (For New Autism Parents)

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Shannon Des Roches Rosa www.Squidalicious.com My son Leo has passed the eleven and a half years mark. I feel like I’m finally hitting my stride as an autism parent, in terms of accepting Leo on his own terms, and not giving a damn about the imaginary “easier” alternate reality society thinks I’m supposed to pine after. This means I think a lot about the information and attitudes I’d have wanted to jack, Neuromancer-style, straight into my brain eight years ago so I could instantly be the parent Leo needed me to be. And that’s silly — neural enhancements aside — because instant downloads do not equal instant attitude adjustments. There’s often no substitute for experience constructed out of progressive, natural epiphanies. Still, that experience can be altered dramatically by external factors, like consistent exposure to positive attitudes and helpful perspectives; they shape our final outlook as parents and as people.…

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Disability

Autism, Siblings, and Fairness

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Shannon Des Roches Rosa www.Squidalicious.com www.ThinkingAutismGuide.com Update: I now know there is such a thing as competing access needs, and that this article is not entirely fair to Leo’s siblings. Please see our 2018 article Understanding Competing Accessibility Needs for more context. -SR Photo © Shannon Des Roches Rosa [image: Young white teen girl whispering into her brother’s ear. They are seated on a picnic table in a park, surrounded by family reunion attendees all wearing light blue t-shirts.] Thirteen-year-old Iz is a wonderful big sister to Leo, who is just 21 months her junior. This photo is of the two of them at a family reunion earlier this month; she’s letting Leo know that the group photos won’t take that long, explaining that if he can just sit for one more minute, then he can go back to the playground, and that he’s being particularly awesome and patient (which…

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Disability

Autism, Parenting, and Summer: Keeping Busy

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Shannon Des Roches Rosa www.squidalicious.com What do we do when my eleven-year-old autistic son Leo is out of school for the summer? We plan, and we keep very, very busy. We rely heavily on visual schedules to structure Leo’s unstructured days. These can be laminated paper (below) or via iPad apps like First-Then Visual Schedule, Routinely, or ChoiceWorks. These schedules let Leo anticipate what his day will be like, and help reduce any related anxiety. Plus Leo is a visual schedule pro, and can now help put his schedules together. We figure out what Leo likes to do. We focus on the things he likes to do that we can make happen. Leo likes swimming and hiking. He likes balls, and trampolines. We can make those things happen. I cut out other activities, and responsibilities. Leo is an energetic, 1:1 kid, and I need to keep up with him. This…

Disability

TPGA Coverage of IMFAR 2012

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Can’t make IMFAR? Don’t worry, four of our TPGA editors are covering the International Meeting for Autism Research in Toronto, Canada, from Wednesday May 16 through Saturday May 19. Reporting starts with today ‘s 11 AM ET press conference (assuming Shannon & Jen make their flight, which has been delayed, eep — stand by).  Panel & presentation coverage will be posted here www.thinkingautismguide.com, via Twitter, and of course on the TPGA Facebook page. Follow us on Twitter at @thinkingautism, @jennyalice, @aspieadvocate, @ejwillingham and @shannonrosa. And if you’re at IMFAR, you can also buy our books at the Autism Science Foundation table — 100% of sales benefit the ASF. If you see one of us, say hi! Science devotees out!

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Disability

My Autistic Son’s Joyful, Successful Disneyland Trip

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Shannon Des Roches Rosa www.squidalicious.com As many of us are planning summer excursions, here are the whys and hows of one autistic boy’s successful trip to Disneyland. Look, I grew up in Anaheim. Disneyland’s fireworks exploded over our house every summer night, and I played Dopey the Dwarf in the Main Street Electrical Parade. I couldn’t be more blasé about the house of Mouse, so if you told me that my former workplace would one day make me happy enough to cry, I’d have scoffed. But crying with happiness is exactly what happened during my autistic son Leo’s birthday trip to Disneyland — he had two full days of pure joy that melted my cold, hard, meh-filled heart. For my son, it really was a Magic Kingdom. Photo of Leo by his uncle Mike Des Roches Leo hadn’t been to Disneyland since 2004 because the interim years were challenging ones…

Disability

How Autism Parents Can Listen to Self-Advocates

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Shannon Des Roches Rosa www.squidalicious.com Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. –Winston Churchill You’d think we parents of kids with special needs — righteous avengers that we so often are — would be extra-invested in listening to the self-advocates who share our children’s experiences, who in many cases used to be our children. You’d think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I’d written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You’d think that, knowing how many times even well-meaning people have dismissed my son’s needs or spoken to him as though he was an obedient puppy, I’d understand how self-advocates might have very little patience for parents…