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 daughter’s diagnosis of ONH in Optic Nerve Hypoplasia, Part 1: Joanna and Chrissa’s Journey, and Joanna shared advice she has for other parents in Optic Nerve Hypoplasia, Part 2: One Mom and Advocate’s Recommendations. Today, we hear advice from two teachers who regularly work with students who have ONH.
The Expanded Core Curriculum and Instructional Strategies
Teachers of students with visual impairments, Julia Bowman and Sara Edwards, seek to empower parents in terms of daily adaptations as well as lifetime advocacy.
Regarding children with ONH interacting with their environment and learning, they state children with ONH often exhibit atypical behaviors and unusual reactions to sensory stimuli.
Understand that to help any child who is blind or significantly visually impaired interact with their environment and learn, it’s important to become familiar with the Expanded Core Curriculum (ECC). Whether your child is in a residential school for the blind, a resource room, or has an itinerant teacher of students with visual impairments (meaning the teacher travels to schools within a school district), your blind or low vision child’s education should include the ECC subject matter, as it (1) enables children to access the core curriculum, and (2) it teaches the concepts and skills sighted children learn incidentally (through observation).
Teachers Julia Bowman and Sara Edwards suggest the following strategies in order to assist a child with ONH in learning and developing the skills of the ECC:
Social skills strategies
Social skills are often a challenge for young children with ONH, and the foundation for these skills is established in the first few years of life. Children with ONH require targeted instruction in this area, due to the highly visual nature of social interaction. Strategies to support this area of development focus on the unique learning needs of children with visual (and other sensory) impairments.
Sensory needs strategies
Children with ONH may process sensory information differently than a typically developing child. Some children may crave additional sensory input or be overwhelmed by sounds, smells, tastes, and/or textures. For the latter group, the amount of sensory information a child is required to process may be adjusted, both in terms of environment, target object, and/or task.
Using songs and fingerplays has long been an effective strategy for teaching language, social skills, and motor skills to young children. Many families of young children with ONH report that their children enjoy music or are calmed by music. Due to its structure and motivating qualities (rhyme, rhythm, and repetition), incorporating music into daily routines is an enjoyable way to teach concepts and skills to young children with ONH.
A team approach
Supporting young children with ONH and their families requires a team approach. As students with ONH may have delays in motor skills, secondary to midline brain differences, the child may benefit from a myriad of specialists. A physical therapist and an occupational therapist may be members of the educational team; an occupational therapist may also provide assessment and strategies for sensory integration issues (as described above); a speech language/feeding therapist can support the child and family in terms of language and social skills, as well as feeding issues related to sensory preferences and/or oral motor skills.
To diver deeper into the formerly-mentioned strategies, watch ONH 101: Strategies for Students with ONH in the Home and Classroom (Part 2) – YouTube, a recorded APH ConnectCenter webinar in partnership with teachers of students with visual impairments, Julia Bowman and Sara Edwards.
Additionally, consider the following resources as you seek to understand ONH and advocate for your child:
- The MAGIC Foundation, is a national nonprofit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes, and diseases that affect a child’s growth
- ONH/SOD Parent Support Group, hosted by The MAGIC Foundation and co-lead by Joanna Mathewson
- Optic Nerve Hypoplasia: A Guide for Parents, a description of the spectrum of problems that can occur in children with ONH
- Optic Nerve Hypoplasia, a brochure on ONH from The MAGIC Foundation
- “Families’ Experiences Raising a Child With Optic Nerve Hypoplasia” by Amber L. Rundle Kahn (unco.edu)
- Optic Nerve Hypoplasia and Autism: Common Features of Spectrum Diseases
- Reappraisal of the Optic Nerve Hypoplasia Syndrome: Journal of Neuro-Ophthalmology (lww.com)
- Prevalence and risk factors for disrupted circadian rhythmicity in children with optic nerve hypoplasia – PubMed (nih.gov)
- Optic Nerve Hypoplasia – NORD (National Organization for Rare Disorders) (rarediseases.org)
- Optic Nerve Hypoplasia | Children’s Hospital Los Angeles (chla.org)