Hi everyone, we hope you are well. We’ve been a little quiet over here, dealing with Kai’s new diagnosis, treatment, college applications, music auditions and a family death. (We’re always keepin’ it real over here!) So, you probably wont hear much from us over the holidays as we attempt to regroup and recharge. However, we wanted to take a moment to wish you a healthy, peaceful holiday season and tell you about something that is making us smile right now. Y’all need to check out the Touch Pad Pro! It’s everything we’ve all dreamed of and more! Below are a few highlights and for more information you can visit the website or listen to an audio interview with founder Daniel Lubiner and Bold Blind Beauty.
Touch Pad Pro will allow people who are blind and low-vision to:
Experience illustrations, graphs, photographs, and selfies – Feel a face rise out of the surface with the contours of the nose, the eyes the cheeks.
Read and write anywhere with 12 lines of Braille.
Experience the Internet like never before.
View, feel and zoom in on a full-color tactile display.
Use a specialized stylus to instantly create, touch, and save tactile drawings with multi-sensory feedback.
As the pandemic throws curve ball after curve ball and families and schools struggle to adapt we, at Navigating Blindness, are excited to launch our new series entitled “It Takes a Village.” Today we will hear from Sarah Immerfall as she explains what her son’s village looks like in the midst of a pandemic.
We’d love to hear from you too. If you’d like to share your story, please reach out for specifications using our contact form. Thank you!
As you may know, our son Kai was recently diagnosed with Autoimmune Retinopathy. When we received the new diagnosis we were shocked and we are still adapting to the news. Thankfully, we had already built a strong network through this blog and our social media presence. We reached out to our community and thanks to your shares, our post was viewed more than 8,000 times. Autoimmune Retinopathy (AIR) is extremely rare, but with your help, we were able to connect with 12 people who are navigating AIR and were pointed to a FB Community for Autoimmune Retinopathy with 166 members (#Rare). Becky is one of the people who immediately responded to our pleas for help with an abundance of support and information. I am honored she agreed to share her story here. Thank you Becky.
Guest post by Becky Jayakumar
Hello, I am Becky Jayakumar and I was recently diagnosed with autoimmune retinopathy (AIR). AIR is a rare autoimmune disease that destroys the retinal cells of the eye leading to progressive vision loss. There are different causes of AIR, no set diagnostic criteria, and no standard treatment which makes it a challenging disease to manage.
A year ago, I suddenly experienced visual changes and lost part of my left peripheral vision. Nothing seemed to cause it, nor did anything make it better. That evening, I was hospitalized overnight for an eye ultrasound, brain imaging, and labs and ultimately, these exams came back normal.
Over the next few months, my vision continued to worsen with progressive peripheral vision loss and increasing visual disturbances. During this time, I had more testing than you can imagine with many potential diagnoses which typically eventually got ruled out. My abnormalities included an enlarged blind spot on the left and a slightly reduced thickness of my left optic nerve. My local retinologist and neuro-ophthalmologist weren’t able to do the additional testing to look at function of the eye in NV, so I was referred to Mayo Clinic. Continue reading “Diagnosis of Autoimmune Retinopathy: Becky’s Story”→
To wrap up our month of braille literacy guest blogs, I’ve asked Kai to share his thoughts about braille literacy. Kai has helped several families, with children who are losing their sight, to understand how braille is helpful & relevant in 2020. Kai is now a college-bound senior in a mainstream, public high school and he is at the top of his class. Here’s what he wants you to know about braille.
Feel the Facts by Kai Owens
30% of all blind people are employed, which means 70% are not. 90% of the employed are braille readers. This means that if you do not read braille then there is only a 3% chance that you will be employed in your lifetime. THREE PERCENT!
So, for every 100 blind people who do not read braille there will be only 3 who are employed.
Yesterday, we learned that Kai has been misdiagnosed for 7 years! It’s not RP or Stargardts, it’s autoimmune retinopathy (AIR). If docs had listened & run proper testing his sight may have been saved. 😭😡😭
When Kai was 10 and first diagnosed with degenerative sight loss, he was scared. He began to have trouble seeing at night and his first reaction was to build a nest on his bed out of blankets and pillows. One night as mom was tucking him into his nest, he said that he felt bad for all the kids around the world who do not have comfortable places to sleep. Mom had no idea how to tackle that issue on a global scale while also helping her son deal with sight loss, but after many conversations together: Kai’s Comforts was born. Kai decided to collect new, soft, highly tactile pillows and blankets from his community to deliver to his peers who are living at schools for the blind. At first, it started out as a great way for us to do something positive, and connect Kai to peers dealing with sight loss. His first collection was delivered to kids at the Georgia Academy for the Blind. A school for children who are blind and visually impaired about 3 hours from Kai’s mainstream school. The first delivery was a huge success the kids were thrilled to receive their comfort items, and Kai got to meet lots of kids who were “like him.”
A few months ago my oldest, typically-sighted son, Cash, called to say that he and his girlfriend were out hiking and found a beautiful log bridge over a stream. As they were crossing the log bridge, they decided to sit down and relax a bit. After getting comfortable they found themselves free-falling into the water below. The log broke! After air-drying in the sun he realized that his wallet was no longer in his pocket. (I later found out that he’d also lost his passport! But that’s a different story.)
Knowing that he was away from home without a wallet stressed me out and I immediately spun into full-blown-problem-solving-mom-mode. But in the midst of lecturing him and outlining all the steps that would be required to replace his items, I realized that this is his problem to solve and he can handle it. I relaxed, took a deep breath and offered suggestions while feeling a wee bit of satisfaction knowing he was about to embark on a total pain-in-the-butt journey and learn a lot of valuable lessons along the way.
So when my husband found our missing credit card laying on the floor in the van, I’m sure he felt a twinkle of justice knowing that I had been feeling the stress of my disorganized money management methods. Typically, I pay for my purchase then drop my payment method or change into my cavernous disorganized pocketbook. And, sometimes, when I hit the brakes just right the disorganized contents spill out of my unzipped purse onto the floor of the van.
When the hubs pays for something, no matter how long the line is behind him, he painstakingly places his change, payment method, and receipt into the proper spot in his wallet. It. Drives. Me. Nuts.
I’m happy to share this incredibly educational video by YouTuber “Cayla with a C” that I think parents of children who are blind and visually impaired will appreciate. Her topics of acceptance, understanding, compassion, independence, and community are spot on. Continue reading “Video Spotlight: YouTuber “Cayla with a C””→
Hi, I’m Kai Owens. I am a 16-year-old athlete, drummer, and mainstream high school student. I’m also legally blind from Retinitis Pigmentosa. I’ve done a lot of Orientation & Mobility training locally, and I’ve also traveled extensively in the US and Vancouver, BC. I use my mobility cane at all times and I’ve recently been approved for a guide dog. I’d like to share a few of my observations about when drivers and mobility canes intersect.
At some point, most sighted people have been driving and seen a blind person and panicked. Some of the encounters are full of mistakes that really do not make any sense. I’m going to walk you through a few common mistakes drivers make in hopes of raising awareness. Continue reading “When Drivers & Mobility Canes Intersect”→
Hi there Navigating Blindness followers, this is Victoria Claire from www.victoriaclaire-beyondvision.com and I’m excited to share how creativity has helped me cope, grow and find joy with vision loss.
“Disability is not an impairment to creativity.” This is one of my statements when engaging with the public while speaking as a sight loss awareness advocate.
As a professional artist in contemporary sculpture, with a career spanning 25 years, I would like to share with you the importance of my creativity whilst traveling along my pathway of sight loss. Creativity became my first port of call when I was at my lowest point after being diagnosed with RP at the age of 19 in 1994. I was a young art student studying graphic design at art college when I found out I was going to go blind. Initially, I didn’t know how to take in what I had been told. For a while, I tried to ignore it and carry on with my life as an art student.Continue reading “KnowledgeABLE Featuring Victoria Claire: Seeing Through My Creativity”→