No Boundaries

It's spring in MA, just like it was in Lake Konstanz, Germany, April 2011

Ben no longer has any good books to read. This is what he told me this morning. Zero Hour, the latest in the H.I.V.E series by Mark Walden, automatically downloaded to his Kindle this past Tuesday morning, is now finished. He said, “I might have to start reading A Children’s History of England“–referring to a book I downloaded on his iPad sometime ago. Yes, I got flack for this at the time, but today his comment was serious. A book about history from Ben’s perspective is definitely better than no book at all.

When Ben was 1 year and 1 week old (precisely August 4, 2002–who says that there is recall bias when talking to parents about their children’s health history?), he got his first pair of glasses. It wasn’t until he was 11 months old that we realized he had dislocated lenses–ectopia lentis–and it was this discovery that started our family on our clinical genetics path. I thought it had been absolutely adorable when Ben brought a board book up to his face and squished it against his nose, and it was equally precious when he would push his face into mine as I held him in my arms, as if he couldn’t get close enough to me. In reality, he couldn’t see anything. Boy, I was so stupid.

His first pair of glasses were truly hideous. They had whitish-clear plastic rims, with super thick lenses to account for his incredible refractory issues, with those sorts of rings that go around the ears in the hope that the child won’t yank them off. I was told that Ben would leave them on because he knew how much he needed them. Indeed, the moment he put those glasses on, he looked around and said “oooooohhhhh!”. I cried. At 1 year old he was finally seeing what we all thought he had been seeing all along.

But Ben has always been sassy, and at 1 year old he knew the best way to get our attention was to rip those glasses off and throw them, especially when were out in public. So despite the seemingly ergonomic and safe design, those glasses did not stay on his face.

Depending on Ben’s vision stability, we might still find Ben with glasses on or off when he reads his Kindle or his iPad. Right now they are mostly on, thanks to Sherin recently finding a really good fitting pair, which means Ben can actually use the bifocal part of the glasses. Because of Schwartz-Jampel syndrome, Ben has trouble bending his neck. It’s easier to not have to lean over a table or desk to read–but it’s even harder to bring something to eye-level due to lack of strength and flexibility in his arms.

It’s because of the Kindle and the iPad that Ben is such a voracious reader. Bookshare allowed him to be able to download for free up to 100 books a month, but he needed to be sitting at a computer to read them. All you voracious readers know that reading on a sofa or in bed is just heavenly–and Ben couldn’t do this with his PC (it was even unwieldy with a laptop). Santa of Christmas 2010 brought Ben a Kindle and reading changed forever. He uses the next to largest font size, there is no glare, and a small light in the case allows him to read in the dark. Sometimes Ben is “missing’ in our house, but I now know to look in the family room. He’s somehow heaved his body onto to the sofa and is curled up with the Kindle.

About a year ago, an amazingly generous friend donated his “old” iPad to Ben when he upgraded to a new one–saying that Ben needed the iPad more than his own children did! With the iPad, Ben can download his Kindle books to the iPad using the Kindle app, but he can also download books from Bookshare using the Read2Go app, which works with Bookshare. It cost $20 to get the Read2Go app, but given that up to 100 books can be downloaded a month for free, this was small change.

We’ve run out of new ideas for books, so please send your recommendations! It will be a long weekend if I don’t get a book before tonight. Lucy, another voracious reader, and I will be at the Hunger Games opening tonight, to see if the movie can in any way compare to such an incredible book and series. But that’s another issue!