On March 5, 2019, my son Russ shocked the delivery room with a full head of bright white hair. The nurses called it “rockstar” hair! He was the cutest little dude, with folks all over the hospital stopping by to see “the baby with the white hair” that all of us blonde ladies pay the … Continued
Breaking a habit can be extremely challenging. One such habit common to children who are blind or low vision is eye pressing, poking, or rubbingâa habit that can damage the eye. HabitAware and APH have teamed up to create a device to help children with eye-poking and eye-pressing behavior. Traditionally, it has been recommended to … Continued
Editorâs note: September is Albinism Awareness Month. In effort to increase awareness of albinism and subsequent low vision in children, APH FamilyConnect shares a dadâs story of learning his young son has albinism. A Dadâs Perspective: Learning My Son Has Albinism Benjamin was born in November 2017. He was fair-skinned and blonde and looked exactly … Continued
Editorâs note: Alissa DeSousa shares memories of her son receiving multiple medical diagnoses, both in utero and in early childhood, including cerebral/ cortical visual impairment (CVI). She also shares how she recognized a need for CVI-friendly videos and proceeded to meet the need. Behind the Scenes: Mom Creates CVI-Friendly YouTube Videos When my pregnancy was … Continued
Editorâs Note: Parents of children and young adults who are blind or low vision can take note of Gena Harperâs transformation from a young person who was self-conscious of blindness to an adult who is self-confident and successful. It is common for young people to desperately want to fit in with their peers. For this … Continued
If your child has been diagnosed with Optic Nerve Hypoplasia (ONH), you are not alone! According to Dr. Borchert for The MAGIC Foundation, Optic nerve hypoplasia (ONH) is the leading cause of blindness in infants and children. Joanna Mathewson recalled her young daughterâs diagnosis of ONH in Optic Nerve Hypoplasia, Part 1: Joanna and Chrissaâs … Continued
We all have a story to tell. Your heritage and culture, family and friends, home and school and work environments, interests, habits, and choices, and your experiences shape your characterâthe character of your story, that is. The same is true for your child who is blind or visually impaired. Crafting the story Wouldnât it be … Continued
If your child has been diagnosed with Optic Nerve Hypoplasia (ONH), you are not alone! According to Dr. Borchert for The MAGIC Foundation, Optic nerve hypoplasia (ONH) is the leading cause of blindness in infants and children. Letâs look at a brief summary of ONH and listen to a mom share her story of her … Continued
Parents and family members of children with cerebral visual impairment, a brain-based visual processing disorder, are far from alone. According to the Boston Childrenâs Hospital, cerebral/ cortical visual impairment (CVI) is the most common cause of permanent vision loss in children.Despite its prevalence, it isnât widely understood. Advocating for Your Child Because CVI research is … Continued
Such a whirlwind of bittersweet emotionsâkindergarten is approaching! Itâs hard to believe how quickly the years have passed, isnât it? Your little one went from complete dependence on you to making strides toward independence. Thankfully your childâs absolute preciousness hasnât changed, but their level of autonomy has. So, letâs take a look at how you can be preparing your child for increased independence in preparation for kindergarten. Working … Continued