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 and low-vision in infants and children.
In Optic Nerve Hypoplasia, Part 1, Joanna Mathewson recalled her young daughter’s diagnosis of ONH. Today we’ll hear the advice she has for other parents.
Joanna’s Recommendations for Supporting Children With ONH
In her quest to empower others to advocate for their children with ONH, Joanna Mathewson shares the following:
- You’re not alone; join an ONH support group! It can feel isolating to have your child receive a diagnosis of a rare condition. Joanna recommends talking with those who have, or who have family members who have, ONH. Talking with others with shared experiences is a fantastic way to share resources, experiences, advice, celebrations, grief, and frustrations. Joanna co-leads the 4,000+ member Optic Nerve Hypoplasia and Septo Optic Dysplasia Support Group found online; check it out! The group, Joanna shared, “seeks to support each other like family.”
- Don’t be afraid to pursue second opinions from medical professionals. If you’re questioning a diagnosis or treatment plan, visit an additional expert. Joanna recommends contacting your local children’s hospital and asking for a recommendation of an expert who has experience with ONH. Children’s hospitals compile lists of resources.
- Schedule your child with an endocrinologist. Endocrine (hormone) issues are very common in individuals with ONH. Your child will need their hormone levels assessed at key stages beginning at birth. When a child is diagnosed with ONH, it’s important that a specialist is looking at the brain by way of an MRI to determine if there are deficiencies and if medication is needed.
- Schedule your child with a pediatric neuro ophthalmologist. Specifically, find one who has extensive knowledge of optic nerves.
- Obtain your medical information about ONH from medical journals and scientists. It’s easy to Google a diagnosis such as ONH and receive inaccurate or out of date information. You want to know from where you’re acquiring information. Joanna recommends The MAGIC Foundation and the files in her ONH support group page for obtaining medical documents from trusted sources.
- Obtain early intervention services as soon as possible. One of the first things parents should do after receiving a diagnosis is sign up for early intervention services, which are services for children birth through three years of age. Talk with your child’s pediatrician to discuss how to obtain services.
- Fight the good fight—you’re an advocate! Joanna recommends writing a letter to the students (and their parents) in your child’s class; share about your child and how to interact with them. You can also ask your child’s teacher if you or your child can share about ONH and braille to your child’s peers. Additionally, consider writing a short bio of your child; include strengths, proper language to use, what your child avoids, etc. to the classroom teachers at the beginning of the year.
- Advocate for braille. Braille should be taught unless assessments reveal it is not appropriate for your child. Braille is not going away!
- Find an educational advocate. You don’t have to go to an IEP meeting alone. Whether you utilize a volunteer IEP Parent Partner or a professional lawyer or advocate, it’s helpful to have a second set of ears and eyes in the IEP meeting who can help you advocate for your child’s free and appropriate public education. To help you find an advocate, do an online search for the keywords “disability resource center” or “local IEP help”.
- Transition advocating for your child to your child self-advocating. Joanna stated she was always the one to advocate for her child, but she has since learned the value of teaching her child to advocate for herself.
- Find a place where your child feels they belong. Whether it’s through participation in a certain extra-curricular activity, through meeting others with ONH, or through events for children/ teens with visual impairments, help your child meet others who share similarities. It’s healthy for your child to feel they belong and they’re not alone.
- Help your child find a trusted adult they can talk to. Joanna recommends locating a therapist and mentors for your child to talk to and learn from.
Joanna also recommends the following resources to help you learn more about complex ONH:
- The MAGIC Foundation, 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)
Additionally, please join FamilyConnect’s upcoming ONH webinar in partnership with Teachers of Students with Visual Impairments, Julia Bowman and Sara Edwards. On Monday, April 11, 2022 at 2:00pm. Julia and Sara will break down the visual, medical, and behavioral components of ONH in a way that will empower parents in terms of daily adaptations as well as lifetime advocacy. Register Here.
There are three parts to the article. You can read the full articles here:
Optic Nerve Hypoplasia, Part 1 Joanna and Chrissa’s Journey
Optic Nerve Hypoplasia: A Journey, Advice, and Instructional Strategies