Tag Archives: deaf blind
Despite all of the challenges…..the device failures, the vestibular loss and struggle to balance, the too-frequent falls with bloody noses and a scraped face, the night-blindness, the communication breakdowns, the constant struggle to learn more in as short amount of time as possible, and all of the appointments……… Rebecca is thriving. There may be falls, […]
Rebecca had testing of her cochlear implants today and more failures were discovered.
Time changes everything, sometimes more quickly than we’d like. When you know what’s coming, you should be prepared for it, right? The time table we were given just doesn’t make sense, it wasn’t accurate. In the beginning, when we were absorbing information as fast as we possibly could, we held onto every word that every […]
On Tuesday the 31st I made a trip up to the Perkins school for the blind in Watertown to meet with a couple of the staff there and show them the BecDot, a braille educational toy I am developing to help provide access to blind and visually impaired people ( more on the device […]
This a project I am working on called the BecDot which is a literacy teaching tool I invented for our daughter Rebecca that could be used to teach visually impaired children Braille concepts.. This video talks a bit about our mission. Learn more about Usher syndrome and get involved We are telling the world about […]
I took Rebecca to story time this morning as I usually do on Thursdays. We walked in and sat on the floor with the rest of the moms/grandmothers and their toddlers. A few minutes into story time Rebecca was curious and got up to go look at something at the back of the room. A […]
This past weekend I spent a good portion of the day at a visions seminar hosted by the Foundation Fighting Blindness. It was not until I received a text from Beth that I realized that exactly one year prior was when we found out that Rebecca would eventually go blind. Before that day I would not […]
Beth and I have been reading a book titled, “No Barriers” authored by Erik Weihenmayer. Erik is an adventurer who is telling his story about kayaking the Grand Canyon and also discusses his adventures of hiking Mt. Everest. He is also vice president of the board of the not for profit, No barriers USA, which began […]
My experience as a parent of a disabled child.
When you take a look at the clinical trial space its difficult not to see the major flaw with studies that target diseases that are considered rare. The big problem is patient enrollment and retention. Patients with rare diseases are, well rare… There are a number of efforts that help with the recruitment and […]