parenting Archives

Peter’s Tale of Triumph and Batten Disease

Posted on June 11, 2024 - 10:46 am by Melissa Schenkel

Peter holding the book, "Marshmallow and Peter"

Beth’s world shifted dramatically when her son, Peter, at just six years old, was diagnosed with Batten disease. “Honestly, I was overwhelmed learning that there was no treatment or cure. My sweet boy would slowly lose all of his abilities,” Beth recounts. The diagnosis was much to digest. However, instead of succumbing to despair, Beth […]

APH FamilyConnect Parent Advisory Board: When Personal and Professional Roles Merge

Posted on January 9, 2024 - 10:59 am by Amy Lynn Smith

For Amy Shepherd, M.Ed., transitioning her career from teaching in elementary school to being a resource for students who are blind or low vision. Most recently joined the APH FamilyConnect Parent Advisory Board – was the direct result of her son Austin’s vision. Now 23 years old, Austin was shaken as a baby by a […]

Letters to Parents: What a School for the Blind’s Principal Wants Parents to Know

Posted on November 6, 2023 - 10:53 am by Peggy Sinclair-Morris

A teacher leaning over to help a student sitting at a table.

As I enter my fourth year as principal at the Kentucky School for the Blind, I find myself reflecting on my time as a Teacher of Students with Visual Impairments (TVI) and Orientation and Mobility Specialist working with students and families in public school. There were times when I was a child’s first TVI, and […]

For One 11-Year-Old, Self-Advocacy and Teamwork Are the Name of the Game

Posted on August 7, 2023 - 8:03 pm by Amy Lynn Smith

Brysen Reid wants to do all the same things every 11-year-old boy does. And he’s been learning to advocate for himself for most of his life. Born with autosomal dominant optic atrophy – a progressive, rare eye disease resulting in fraying optic nerves – Brysen has difficulty seeing things at a distance. Even with his […]

National Center on Deaf-Blindness: Family Leadership, Engagement, and Empowerment

Posted on May 9, 2023 - 4:02 am by Melisa Matthews

Child with hearing aids playfully gives eyeglasses to an adult

Families are the experts in knowing their child, which should positively impact the decisions made for a child who is deafblind. Children who are deafblind have specific needs and considerations that are “compoundingly complex.” Families with a child who is deafblind will go through many stages of emotions and have different needs as they support […]

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