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Terri Mauro

From My Inbox: Autism Education and Outrage

By November 19, 2012

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InboxHere's my weekly gathering of events, activities, and sites of interest that have landed in my e-mail queue or otherwise caught my attention this week:

+ An e-mail from the folks at HandHold Adaptive alerted me to a free app from another developer, ActiveHealth Management, called "Questioning Autism?" According to the iTunes preview page, it's "a free, easy-to-use educational app designed to help parents and caregivers understand more about autism, and to provide a starting point for conversations with pediatricians."

+ A recent comment on my post about transplants for kids with special needs mentioned a boy with autism being denied a heart transplant, and provided a link to a petition against such discrimination. I contacted the commenter for more information, and Susan directed me to a video of the young man in question, Lief O'Neill, entitled "To Type Is to Love." From there you can go to his mother's Facebook page and find a link to Life for Lief, a page set up to document his medical crisis. There's information there on how you can help the family financially and with prayers, if you're moved to go above and beyond petition-signing.

+ The National Down Syndrome Society will be hosting a webinar on November 29, 1-2 p.m. ET, on the topic of "Achieving Meaningful Employment for Youth With Intellectual and Developmental Disabilities: High School Transition the Project SEARCH Way." The guest will be Maryellen Daston, Ph.D. and Susie Rutkowski, M.Ed. co-authors of High School Transition that Works: Lessons Learned from Project SEARCH.

+ If you're going to be traveling abroad with your food-allergic child over the holidays -- or if you live in a non-English-speaking country all the time, for that matter -- there are some downloadable foreign-language allergy-explaining cards available for download on the BrokerFish site. Sure wish they had these in English, too, because the way some restaurants respond to allergy requests, you'd think we were speaking a foreign language.

Has something interesting rolled across your computer screen this week? Share in the comments.

Photo by Terri Mauro

November 20, 2012 at 10:31 am
(1) Vanessa Truett says:

From Lief’s mother: want people to know, especially those in the autism community, what Stanford doctors told us today. He was flown here, red tape thrown to the side and is alive today with a hook to hang hope on precisely because they were outraged n appalled of hearing about the other hospitals that rejected him outright because of his autism. I have always thought that Lief, and all our children are opportunities to develop and use our compassion. The people at those other hospitals were given an invitation to be compassionate n expand their conception of what it means to be fully human. They turned their backs on that invitation but Stanford accepted him with open arms. Our children with disabilities are truly here to make us bigger people. I am thankful today for compassionate people.

If you want to follow the story it is a public page on FB:

November 20, 2012 at 4:43 pm
(2) Susan says:

The latest news on Lief:Tomorrow we find out if Lief will be accepted on the donor list. He would be given the most urgent status but it is usually a hundred day wait on average. He would have to become very stable and move to other machines that are less supportive. Many ifs but hope is still here with us. We are feeling very grateful for the chance to offer his spirit more life. -Jessica, Lief’s mom.

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