Tag: Shannon Des Roches Rosa

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Disability

An Interview with Seth Mnookin, Author of The Panic Virus

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It is bizarre that claims linking vaccines to autism have persisted for more than a decade when they can be debunked by a sixty-second Google search. But, as investigative journalist Seth Mnookin explains in his new book The Panic Virus, vaccine facts can’t always compete with parent-, internet-, and media-generated vaccine beliefs. The Thinking Person’s Guide to Autism talked with Mr. Mnookin about his book, about the risks of complacency regarding public opinion on vaccines and autism, the flaws of modern science journalism, why and how pediatricians need to step up their participation in vaccine education, the tragedy of an autism community divided, and why we need to keep blasting holes in echo chamber walls. —– Why did you feel compelled to write this book? It was not because I had a personal connection, which is odd because it’s such an emotional topic. But I was shocked at how people…

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Disability

Autism and Holidays: Success Through Meticulous Planning

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Shannon Des Roches Rosa www.squidalicious.com As the 2008 holiday season sputtered out and the last relatives left our house, I exhaled, then smiled. I’d really enjoyed all the feasting and fun, from the morning moment the kids’ cousins started frolicking underfoot, until the last precious late-night conversation wound down. But there is no way in hell we can manage another holiday season like that one, because floundering in all the happy happy joy joy was one miserable, disoriented, sleep-disturbed little boy with autism and his equally disoriented parents. Please, learn from our mistakes and successes so that your holiday season can be as enjoyable as ours was but suck less than ours did. Your advocacy skills need to go into overdrive during the holidays. Of course you need to advocate for your child, to ensure they’re accommodated — but you also need to advocate for yourself. Your children are sensitive…

Disability

When You’re Gone: Practical Planning for Your Child’s Future

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Shannon Des Roches Rosa www.squidalicious.com A lot of us parents like to put our hands over our ears and shout LA LA LA LA LA when asked to think about formulating a life care plan, because that means we’re envisioning the future of our children with special needs without us at their sides. But denial and avoidance do both us and our children a disservice. The time to think about planning for our children’s future is now — the earlier we start, the more comprehensive our planning will be. And the steps involved are both more involved yet less daunting than you may think. The following summary is based on a 2010 SEPTAR.org presentation on Financial Planning and Your Child’s Future, given by Nick Homer, a Special Care Planner from MassMutual’s general agency in San Jose, Miceli Financial Partners Wealth Management and Insurance Services (MFP). While the following information is…

Disability

Quality Time

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TPGA is taking a wee break as all but one of our editorial staff is traveling — with our children with autism — and that is a rather time-consuming and internet-unpredictable undertaking. We’ll resume posting essays on Wednesday, August 25th. We’re very grateful for the fat pile of submissions both published on the site and upcoming, and encourage you to submit more, share more, build community more. The discussions in the comments  have been fantastic! Our thanks to everyone who has helped our community thrive. While we’re away, you can check out what our editors have been up to: Liz has been doing helpful TPGA round ups: Thinking Person’s Guide to Autism: Authors June 6 to August 2: What A Lineup! Thinking Person’s Guide to Autism: June 6 to August 2: Posts By People With Autism Thinking Person’s Guide to Autism: June 6 to August 2: Autism from Diagnosis to…

Disability

Does Your Child With Autism Have a Daily Record?

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Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa There are so many factors that can influence or illustrate how our children with autism are wearing their own skin, including but not limited to: health, toileting, aggressive and/or self-injurious behaviors, sleep patterns, medications, language usage, diet, and school performance. We’ve used a Google spreadsheet to successfully track important factors for my son Leo for the past several years. A daily record of Leo’s important variables helps track and explain underlying patterns if and when things go awry — or go well. Because we keep Leo’s record online as a Google docs spreadsheet, it can be shared with his entire school and home program team, as well as with interested family and friends. Once a behavioral record has been set up, it takes only a few minutes each day to fill it out. An online behavioral record spreadsheet has been an invaluable tool…

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Disability

Autism, Parenting, and the Importance of Attitude

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Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa Consider the same day, the same circumstances, the same children, the same parent – but filtered through two different attitudes: Leo and I had the worst day ever. Leo and I had the best day ever! Why does Leo always wake up so early? His sisters sleep until we shriek at them to get up, like self-respecting children should. I’m so irritated that he’s sometimes wet in the mornings. He’s never going to be fully self-sufficient. Leo got up at 6:30, but that’s certainly better than yesterday’s 6:00, and then it was his dad’s turn to attend to our early riser. And how amazing that Leo now spontaneously asks to go to the bathroom when he gets up, and is frequently dry. If you’d told me three years ago how well he’d be doing with his self-care at age eight, I wouldn’t have…

Disability

Identifying and Avoiding Autism Cults

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Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa A child’s autism diagnosis can mess with parents’ heads. Media portrayals of children with autism and their adult spectrum-mates dwell almost exclusively on negatives and challenges, so when a parent is told that their child is autistic, they are usually incredibly upset. It doesn’t help when doctors lack the bedside manner to soften the emotional impact of their diagnoses, or have no information about contemporary autism therapies and resources. When that happens, parents are both freaked out and flapping in the wind. Their child’s doctor was supposed to give them answers and guidance, but instead upended their lives, then shoved them out the door. No one can explain why they have a child with autism, and they know nothing about autism. They are emotionally reeling, angry with the medical establishment, and hungry for any information that will help their child. Most parents start…