Talking About TPGA, Autism Acceptance, & iPads With Health Central's Jeremy Shane

One of the pleasures of IMFAR was meeting HealthCentral's Jeremy Shane in person after corresponding online, and I was honored when Jeremy asked to interview me. The interview is broken up into three segments, each with the same intro about me and Leo.

The first segment is on how the Thinking Person's Guide to autism website and forthcoming book provide the "crash course" parents of kids with new autism diagnoses need (and which doesn't currently exist), and also addresses the importance of finding positive role models, community, and information as soon as possible after an autism diagnosis:



The second segment is on accepting our children for who they are; and on steering clear of negative parenting attitudes, and flawed information on matters like vaccines:



The third is about iPads being so much more than AAC devices, and how much I wish experienced app developers would work with experienced autism and special needs professionals to create the ideal apps for Leo and our community. I also talk about the need for parents to continue broadening their perspectives on what it means to have autism by reading sites like Kristina Chew's blog at autism.typepad.com, about parenting a teen with autism, and through watching movies like Todd Drezner's Loving Lampposts.

Blogging IMFAR

I'll be at IMFAR, the International Meeting for Autism Research, for the next four days. I'll be blogging as much of the conference as I can, at the Thinking Person's Guide to Autism, starting with today's 11 AM PST press conference -- so stay tuned!

The number of IMFAR sessions and panels [PDF] is incredible. If you want to make a case for a specific session I should report on, leave a comment and I'll do my best.

Thanks again to the Autism Science Foundation for the travel grant that made my attendance possible. And if you're actually at IMFAR, do find me and say hello, or DM me on Twitter: @shannonrosa.

Also -- if you'd like to come to Sunday's San Diego iPad workshop, please let me know ASAP so we can fit you in.

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Apparently Leo is not very happy that I'm gone. Nor that I, uh, took his iPad 2 to lead Sunday's workshop -- guess I should have had that original iPad raffle next week, eh? He does have his iPod touch, but not great planning in hindsight. No (other) regrets -- Leo's former iPad went to a teacher in our very own resource-challenged school district, a teacher who has an included child with autism in her class. So even though folks entered the raffle from all over the country, I got to hand-deliver the iPad, and it couldn't have been a better match.

Poor Leo. I'll miss him too. There will be lots of Skype video chatting going on, methinks -- we'll see if that will make him feel better or just makes him more sad. How do all y'all keep connected with your kids, if and when you travel away from them?

Vrrrrrooooom!

Here's Leo riding his first-ever go kart racer with his dad, while we were in Phoenix over the holidays. He had a great time!

This is also a good representation of the clip at which are days are going lately. Don't blink, is all I can say.

There are two massive top secret projects on the front burner, I'm hoping I can share the news about them eventually.  But even just living the lives we've arranged for ourselves is not an endeavor for the faint-hearted or the easily winded, not lately.

So I'll likely be re-evaluating participation in a number of those day-to-day things, mostly with an eye towards improving quality of life with my family by being less tired and therefore less grumpy and twitchy, and snagging more hours of sleep than I can count on one hand per night. Reasonable goals.

I have to say, I am really proud of The Thinking Person's Guide to Autism, even though crafting the associated book in a manner than does its content justice has taken longer than we editors anticipated. But as for quality of content: In the last two weeks on TPGA I interviewed vaccine expert Dr. Paul Offit about the most commonly held public myths about immunizations,  I interviewed investigative reporter and The Panic Virus author Seth Mnookin about why we need to hold the media resonsible for allowing vaccine fears and misinformation to proliferate, we featured Mark Osteen's powerful insights on his son's never-ending attempts to talk despite largely uncooperative wiring, and Jennyalice wrote a barnstormer, When Medication Is the Right Choice -- a post I think should be posted on every parenting forum in the country (or dropped on the head of every parent who has ever gone around proclaiming "I could never medicate MY child" because they've been fortunate enough to have a child who doesn't require medication just to get through five minutes of a day, let alone an entire day).

I'm also considering going to the IMFAR conference this year. Have any of you ever been? What did you think? From the INSAR website:

The International Meeting for Austism Research (IMFAR) is an annual scientific meeting, convened each spring, to exchange and disseminate new scientific progress among ASD scientists and their trainees from around the world. The first and primary aim of the meeting is to promote exchange and dissemination of the latest scientific findings and to stimulate research progress in understanding the nature, causes, and treatments for ASD.

Also, I'll be speaking on iPads for people with special needs at the UCSF Developmental Disabilities Conference on March 10th. Our key note speaker will be Surgeon General Regina Benjamin:

Dr. Regina Benjamin, [...] our major keynote speaker [will] address issues related to diversity among health care providers serving an increasingly diverse population of children and adults with autism and other disabilities.

Here's info about the conference itself:

This conference provides a practical and useful update for primary care and subspecialty health care professionals caring for children, youth and adults with complex health care needs and developmental disabilities. This year’s topics offer new perspectives, research findings and clinical guidelines, including an overview of relevant information for pediatricians, family physicians, internists, and nurse practitioners who are involved in the care of individuals with autism spectrum disorders, cerebral palsy, and other disabilities.

Even though the conference is geared towards health professionals, much of the information will be useful for families, too. I'd be so grateful to see familiar names and faces.

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By the way, it's Jennyalice's birthday today. Please go wish her joyeux anniversaire (she has a thing for French).