#corticalvisionimpairment

[emmahastwomoms]

Tomorrow, February 29th, is 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲!! We will all be rocking our stripes in honor of this girl and her Rare Disease, Bosch-Boonstra-Schaaf Optic Atrophy Syndrome!! Be sure to wear your zebra (or black & white) stripes and use the hashtag #showyourstripes and #rarediseaseday to help raise awareness for the amazing people effected by rare diseases! Emma is one of less than 150 people in the world with her genetic mutation and it causes many of her health issues. We want to help raise awareness because without people knowing about it, funds and medical advancements can not happen! Let’s all stand strong for Emma and her friends with rare diseases!!! ⁣⁣ ⁣⁣ #emmaleimomi #rarediseaseday #showyourstripes #rarediseaseawareness #boschboonstraschaafopticatrophysyndrome #bbsoas #nr2f1 #autismspectrumdisorder #asd #sensoryprocessingdisorder #spd #developmentaldelay #opticnerveatrophy #opticnervehypoplasia #onh #ona #cvi #corticalvisionimpairment #hypotonia #dysphagia #gtube #gtubelife #tubielife #tubietoddler #tubiemom #gtubemom #specialneeds #specialneedsfamily #specialneedsmom #advocatelikeamother https://www.instagram.com/p/B9E8PxYFUJ4/?igshid=ep6rn5b5d66m

[autismafterschool]

Imagine how weird it would be if your blind child walked up and asked you, "Why aren't you wearing your glasses?" The combination of autism and cortical vision impairment makes Jess such a complex person. What she can and cannot see has always been a mystery. Her communication difficulties prevent her from being able to explain it to us. We know some specific things she can see, we are not sure what all she can't see, and every now and then she will see something that we would never have thought she could see. #corticalblindness #corticalvisionimpairment #visualmystery #functionalvision #autism #adultautism #brainct #ctbrain #circa1990s #congenital #birthdefect #hydrocephalus

[emmahastwomoms]

Happy World Braille Day!! Because we don’t know Emma’s vision acuity or how long she will have vision in her life we are taking baby steps to get her prepared for her possible future. She loves wooden toys so these blocks and tiles are amazing because they have both the lowercase and uppercase letters so she can learn to differentiate them. We have started learning Braille as well and it is one of the most difficult things I’ve had to learn, but anything for my baby to make sure she gets everything and anything she needs to progress and succeed in her life!! And you only get one of each letter, so Emma’s initials it is because of double letters in all of her names!! ⁣ ⁣ #emmaleimomi #bbsoas #bbsoasawareness #boschboonstraschaafopticatrophysyndrome #nr2f1 #nr2f1foundation #geneticmutation #visuallyimpaired #babyglasses #opticneverhypoplasia #onh #opticnerveatrophy #ona #strabismus #corticalvisionimpairment #cvi #braille #nationalbrailleday #brailletoys #brailleblocks #learningbrailleformybaby #anythingformybaby #specialneedstoddler #specialneedsmom #specialneedslife #preparingforherfuture https://www.instagram.com/p/B68sjdZFqRk/?igshid=1v8w4qixm6z1h

[emmahastwomoms]

New blog post is up!!! Find out what we’ve been up to since finding out Emma’s diagnosis of Bosch-Boonstra-Schaffer’s Optic Atrophy Syndrome. We thought we were busy before.. link in the bio!! ⁣ ⁣ #emmaleimomi #emmahastwomoms #newpost #blogpost #upontheblog #linkinbio #specialneeds #specialneedsfamily #specialneedsmom #specialneedstoddler #nr2f1 #boschboonstraschaafopticatrophysyndrome #sensoryprocessingdisorder #spd #hipdysplasia #hypotonia #raredisease #geneticmutation #nonsensemutation #babyglasses #opticnervehypoplasia #opticnerveatrophy #corticalvisionimpairment #cvi #strabismus https://www.instagram.com/p/B4BRKV1F2yd/?igshid=1nck502pg0mf0

[autismafterschool]

New Blog Post with Video - Negative Expressive Communication - link in bio. The reason I wanted to share a video like this is because I think it’s a good example of how I try to work through situations with Jess that could otherwise lead to a meltdown. Also, I think this video demonstrates how Jess can emotionally struggle even with an event that she’s looking forward to, work through the emotions, and then end up enjoying the event. . . #expressivecommunication #communicationdisorder #autisticadult #autism #specialneedslife #partyproblems #sitinthefront #travelpreferences #corticalblindness #corticalvisionimpairment #cvi #hydrocephalus #vpshunt #receptivelanguage #negativenancy