Tag Archives: Amelia

The Power of Stories to Share Hope

On March 1, 2017, I saw a whole lot of awesome.

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.

[Download the booklet, PDF (6MB)]

sharing-hope-amelia
Amelia’s page in “Sharing Hope”.  By the way, that stone wall behind her is Chateau LaRoche, the Loveland Castle!

Amelia’s story is one of 26 articles featured in the booklet.  The article is a summation of the contents of my “Ten Important Things Amelia Needs You to Know” Ignite-style presentation.

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.

 

Ten Important Things Amelia Needs You to Know

Ohio’s State Professional Development Grant (SPDG) provides resources for select districts to participate in important work around changing outcomes and improving achievement for diverse learners.

I was honored to be asked to speak at a state-level meeting of SPDG district representatives at the Battelle for Kids “Connect for Success” conference.

My presentation was titled “Ten Important Things Amelia Needs You to Know”.  Big thanks to my friend Patti Porto for getting video of the presentation for me!

The slides are available at goo.gl/8YisM1.

Some useful, free ePub Readers

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.