#vimom

Owen had his annual opthalmology appointment today! Not life changing news, but he was able to see the letters on the screen at 400 at 18 feet as opposed to last year seeing them at 15 feet. Basically what this means is that someone who sees 20/400 can see at 20 feet what those with normal vision can see at 400 feet. Although this is in a controlled environment this "test" has consistently shown improvement, despite zero changes to his optic nerves. He answered most of the questions himself and spoke about his sisters who he said he loved very much. He even got his math work done on the way there! Great job O! Picture descriptions: 1. Owen in his carseat holding iPad and smiling. 2-5. Owen in opthalmologist office chair doing various things with the tech and doctor. #OpticNerveHypoplasia #SeptoOpticDysplasia #VisuallyImpaired #VIMom #disABILITY #DukeEyeCenter (at Duke Eye Center) https://www.instagram.com/p/CLqDz0tnW32-UjxfbfRGFiZ_H-RGY_j1DbutzI0/?igshid=19ces0d41xodp

Late post but wanted to share that Owen made his lunch today all by himself. I guided him through the steps, stayed patient (👀) and am really proud of him. His response to making his lunch was that "one of his dreams come true..."🌟 · · Picture description: a collage of 3 pictures showing Owen making lunch (a sandwich) and 1 picture of him sitting at table smiling. #OpticNerveHypoplasia #SeptoOpticDysplasia #VIMom #disABILITY #Son #LunchTime (at Benson, North Carolina) https://www.instagram.com/p/CK0QmZpHxk2dB7IPs1e4HhaeLSsBaT1TECkJkU0/?igshid=u238br4rgxvy

September 11, 2013, Owen received the diagnosis of Optic Nerve Hypoplasia and Septo-Optic Dysplasia. Diagnosis dates are hard, yearly reminders to families who have children with a disability. They are reminders that your child is different...then you're reminded again that being different is more than okay; One of the reasons? Because there are people like Ms. Shirley who come into your life BECAUSE of this difference. People like Ms. Shirley never leave even when their "job" is over, or judge when your child is stimming, or send "thoughts and prayers" when shit hits the fan. They are dedicated, patient, and full of real advice. So, instead of wallowing in the pity of mom-guilt this day, I have reflected silently about each professional person who has made this journey easier. Ms. Shirley just takes the cake. #OpticNerveHypoplasia #SeptoOpticDysplasia #VisuallyImpaired #VIMom #disABILITY #DiagnosisDate #Braille #TeacherOfTheVisuallyImpaired https://www.instagram.com/p/CFBUmHkHunzdctEYIQcvyM4WRNH_LvkQyAuCec0/?igshid=1m34urp8snegb

These are just some of the professional pictures taken by @akiramedia from July 8 and July 9 at the @indojaxsurf camp in @wrightsvillenc. I can't get over how great they are. What amazing shots of Owen and his instructor! Check out Owen standing fearlessly on that board!!! · · · · #OpticNerveHypoplasia #SeptoOpticDysplasia #VisuallyImpaired #VIMom #disABILITY #Surfing #IndoJaxSurfCamp #IndoJaxSurfCharities #VISurfCamp #ItTakesAVillage #IndoJax #FutureSurfer #Fearless #AtlanticOcean #WrightsvilleBeach #WrightsvilleBeachNC #HangLoose (at Indo Jax Surf School) https://www.instagram.com/p/CCgm11jnDvi5pWd_V7IG-83FeSuDEVgea3FkWw0/?igshid=18xcaffgi0uh9

This past week has been just super cool! We spent Tuesday, Wednesday and Thursday at our favorite beach (@wrightsvillenc) and watched Owen experience the ocean in one of the most awesome ways with @indojaxsurf camp. Unfortunately the surf camp was cancelled Tuesday, but Wednesday and Thursday made up for it. His excitement and willingness to get out there and try his best made us so proud. He had a great and patient instructor named Will who can be seen in the photos. The reward of it all was hearing him say to me as we left the beach Thursday that HE was so proud of HIMSELF. · · · Thank you everyone who donated, shared, watched and cheered Owen on! It takes a village 🤙🏼❤️ · · · #OpticNerveHypoplasia #SeptoOpticDysplasia #VisuallyImpaired #VIMom #disABILITY #Surfing #IndoJaxSurfCamp #IndoJaxSurfCharities #VISurfCamp #ItTakesAVillage #IndoJax #FutureSurfer #Fearless #AtlanticOcean #WrightsvilleBeach #WrightsvilleBeachNC #HangLoose #ShakaSign (at Indo Jax Surf School) https://www.instagram.com/p/CCfSMCDHNIINLaRT4QEkWnN6BHXd4B4bSmL_FQ0/?igshid=cb8dliywk8fz

At bedtime each kid gets a story. Sometimes they’re long, sometimes they’re short (like more than sometimes), and sometimes they become reality! At bedtime tonight I laid with Owen and said “Once upon a time there was a little boy who had a blue bag and in the blue bag was something cool (Richard enters with blue bag). The little boy opened the blue bag and pulled out the items inside. What are the items inside? The little boy wondered?” So outside of the bedtime story the little boy aka Owen, a bit confused said hey that’s my name and my name in Braille... am I going to a Braille thing? We said nope! Those are rash guards and you wear them to the beach when you surf! So Owen says oh cool! Or to the pool or the lake? We said sure but THESE are special for the beach to surf. And he proceeds to talk about the pool and the lake again 😂. So we broke it to him straight! We said thanks to mommy and daddy we registered you and donated so you can attend a surf camp for the visually impaired this week! (Insert big smile!) Thanks to Papa for using his hotel rewards for us to stay! Thanks to a lot of other wonderful people who donated and shared, you and other VI kids can enjoy this experience! Thanks to Ms. Courtney for making you some awesome rash guards! • • He is SO excited! Indo Jax Surf Camp we will see you Tuesday! #IndoJaxSurfCamp #IndoJaxSurfCharity #OpticNerveHypoplasia #SeptoOpticDysplasia #VIMom #VisualImpairment #disABILITY #Experiences #Surfing #WrightsvilleBeachNC #ItTakesAVillage 📸: @richardp0615 Customized rash guards: @sprucedupbyceh (at Benson, North Carolina) https://www.instagram.com/p/CCSLs8tnbcCikWefSfTcSsYNNfBQBd7NnHAO2s0/?igshid=1hm49pnsdggg9

I’m getting really excited about the @indojaxsurf Charity Visually Impaired Surf Camp which is just two weeks away! I received the welcome packet today via email with all the information for the three days! I haven’t told Owen yet - any ideas on a good surprise!? •• I really want to thank everyone who has donated to this charity! If you would still like to donate, the link is in my bio (for Instagram) and will be in this post for Facebook! •• #IndoJaxSurfCharities #IndoJaxSurfCamp #VisuallyImpaired #VIMom #disABILITY #OpticNerveHypoplasia #SeptoOpticDysplasia #Surfing #Ocean #WrightsvilleBeach #WrightsvilleBeachNC https://www.instagram.com/p/CByVRJ1AMj0beo-KTNr91Bmz914eGazyJh1ztk0/?igshid=1fycgv8pxla9c

Owen's using the laptop for one of the tasks given by Ms. Gina, his TVI (teacher of the visually impaired). It's a fully accessible website/app called Accessibyte designed for Blind and Visually Impaired users. There's a bunch of different applications within the website/app; for users of all levels and includes clear audio, high contrast for users with low/some vision, and functions using the keyboard. Owen and I played Hangman, Samurai and Canteen today. @accessibyte #OpticNerveHypoplasia #SeptoOpticDysplasia #VisuallyImpaired #VIMom #disABILITY #Accessibility #Technology #Quarantine #LearningAtHome #LowVision #Accessibyte #TVI (at Benson, North Carolina) https://www.instagram.com/p/B-hj2QinothDgPMoGz6uAISqW5ESYP9LLJ8jfo0/?igshid=p4sx9w775xeg