My October TEDx Dayton Talk, “Lessons My Daughter With Autism Has Taught Me” is now live on YouTube.
This presentation was probably the most difficult to prepare for of any I’ve done. The process made me deeply search what I think, what I feel, and what I believe – not only about Amelia, but about education and all students. I hope the result, and Amelia’s story, can serve as an inspiration to think deeper about learning and expectations.
The 6th annual TEDx Dayton event has come and gone. The theme for this year’s program was “Shift”.
I was so honored to be included as a speaker for this year’s program. My talk was about lessons I have learned from my daughter, Amelia. Amelia just turned 9 years old, and was diagnosed with Autism just before her third birthday.
I have told versions of this story in other formats – as a five-minute Ignite session at the Ohio Educational Technology Conference a few years ago, in an article that was published in a booklet called “Sharing Hope”, and as a brief keynote address to special education and school improvement consultants in Ohio. But, the presentation was never as “polished” as it needed to be for TEDx Dayton.
The process of breaking my thoughts down to their bare essence, and then building back up to a connected and meaningful series of thoughts, was one of the hardest things I have ever done professionally. I am deeply grateful for all of the support that the TEDx Dayton organizers offered me to help get my talk to that point – after all, it will soon be available on the Internet for the world to see. (Yikes!)
It takes several weeks for the recordings to be finalized and posted among the videos on the TEDx site. But you can bet that once it is there, I’ll happily share Amelia’s story with anyone who would like to listen!
Earlier this year, I submitted a TEDx Talk proposal for this year’s Dayton event. Mine was one of nearly 200 proposals submitted. I was very pleased to be chosen as one of about 50 to get to audition. And now I have the honor of being chosen as one of the speakers at this year’s TEDx Dayton!
My talk is titled “Ten Things I Have Learned from Amelia.” Amelia is my soon-to-be-nine-year-old daughter, who was diagnosed with autism just before her third birthday. This talk has been brewing in my mind for years, and I have already used it as the basis of a five-minute “Ignite” style talk, and it appears in the CCHMC booklet “Sharing Hope”, which is given to families of individuals who are beginning a plan of care at their Department of Developmental and Behavioral Pediatrics. While there have been many discussions over the last six years about what and how we might teach Amelia, I have found it to be much more powerful to pay attention to what and how she is trying to teach me about herself and the way she sees the world.
The organizers of TEDx Dayton have pushed me (and all of the other speakers), to make sure that we are able to give the best quality delivery we can of the best quality construction of our message that we can. On Friday, October 12, Amelia’s will be one of several stories that are told that day, on the stage of the Victoria Theatre.
I have many, many people to thank for their contributions to Amelia’s development over the last nine years, and I won’t have time to thank them all on October 12. But, my goal is to let Amelia, and all of her friends and family, and everyone out there who can identify with her, know just how amazing she is and how much we can all learn from one another if we’re willing to pay attention to the lessons being taught.
My daughter, Amelia, was invited to attend a private “Launch Party” for a brand new booklet, published by Cincinnati Children’s Hospital Medical Center’s (CCHMC) Division of Developmental and Behavioral Pediatrics (DDBP). The booklet is titled “Sharing Hope: The Stories of our Patients and Families”, and it will be distributed free of charge to families of individuals who are referred to DDBP for various reasons. The booklet contains brief articles written by individuals who have previously been referred to DDBP, and their family members.
I had an opportunity to meet some of the other honored guests there, and I feel very privileged to have met such wonderful people! Reading some of their stories after meeting them just makes it even more powerful to me. Families of people like Lily, Vineet, Patrick, Andrew, and so many more, have willingly told their stories with the intent of conveying encouragement and hope to others who are just learning what a diagnosis of “autism” or “down syndrome” or “spina bifida” will mean for their lives.
The impact of a powerful network of caring professionals is what keeps CCHMC near the very top of U.S. News & World Report’s list of best children’s hospitals. But, there is something extra to be gained from hearing the experiences of others at a time when most families find themselves starting a journey nobody they know has gone through.
Alongside the best medical treatment available, there is something soothing about a voice that can tell you honestly, “I know how you feel.” That’s something no medicine can provide. And, it has a lot to do with why these families chose to own their story and tell it, rather than try to hide the diagnosis that, quite honestly, changed their lives forever.
Amelia’s diagnosis is a challenge, but it is not a shame. She rises to meet that challenge every day. That message of love, belief, and hope is conveyed throughout the pages of this booklet, and I am proud to be dad to such an inspiring young lady.
Today, it’s easier than ever to write, edit, and publish your own material. Until recently, if you wanted your material to be viewable by the broadest range of people, you were pretty much stuck with using the Portable Document Format (PDF) for your work. PDF is a light (compared to images) format, and allows you to produce print-quality page-size copy in color. But, eventually you will want to dabble with Interactive Media, and you’ll outgrow PDF like your first pair of baby shoes.
Enter ePub. The ePub format takes a standard book-page format (with text and images), and adds the ability to incorporate various multimedia elements (like sound and video). To view an ePub document, you’ll need an ePub viewer. Depending on the device(s) you like to use, several good free ones are available!
Free ePub Readers
Depending on what type(s) of devices you use, you’ll need to find a program or app that will read the ePub format.
iBooks (iOS) – If you have an iPhone, iPad, iPad Mini, or iPod Touch, iBooks is the way to go. Lots of free books are available from the iBooks Store, and it will view PDFs and of course ePubs. The iBooks Store offers “Enhanced Books” that include multimedia elements embedded in certain pages.
Booki.sh (Web-based) – Booki.sh is a web-based service that lets you manage and read ePub (and other format) documents online. This is a great option for a user with multiple devices who has Internet access practically any time.
ePubReader (Firefox extension) or Readium (Chrome extension) – Read and manage ePubs right inside the browser. Chose the one that matches the browser you are currently using. If you’re not using Firefox or Chrome (why not???), try Booki.sh above.
Adobe Digital Editions (Mac, Windows) – If you insist on reading ePubs on a Mac and not doing it through the browser, Adobe Digital Editions is my first suggestion. Also, some screen reader programs have difficulty navigating and handling ePubs inside a browser window, so Adobe Digital Editions may clear up some of those issues if you’re trying to use, for instance, NVDA on Windows or VoiceOver on a Mac.
MobiPocket (multiple)- Some of my friends love this one. I haven’t used it yet, but it looks nice. Allows annotation and can be used across multiple devices and platforms. The one-click dictionary is an impressive looking feature as well!
Now that you have an ePub reader, you need an ePub to read! How about this one I made using the Book Creator app on an iPad Mini? It is all about Amelia’s trip to the Cincinnati Zoo with her pre-school class. Book Creator is available for both the iPad and Android tablets.