The following is a sampling of resources to information and supports concerning the various aspects of life with Optic Nerve Hypoplasia (ONH). This list of resources is not meant to be comprehensive. However, it will give you as a parent or family member an overview of the many unique challenges that go along with raising a child with ONH. Some of these sites point to supports that were crucial to my own personal growth and development as an adult with ONH. This list is divided into categories. They include:
· Support groups and organizations operated by families of children with ONH and related conditions
· Blindness and vision-related resources
· Sites on Autism and sensory integration
· Assistive technology related organizations and resources
· Sites on the education of children with ONH and resources for educational advocacy
· Sources of information on related medical conditions, such as Diabetes Insipidus and Panhypopituitarism
· Links to professional organizations and government benefits that you might encounter on your journey of raising your child.
I also have a miscellaneous category of links to information about what interested me as a child with ONH and Autism Characteristics.
If you have any questions about this list or know of a link that’s not included, please feel free to send me e-mail at firstname.lastname@example.org, and I will add it.
Organizations operated by families
One Small Voice Foundation- Organization that funds research on Optic Nerve Hypoplasia and Hydrocephalus operated by the family of a child with both conditions. Also contains links to the latest research on ONH being conducted at Children’s Hospital Los Angeles, one of the world’s leading research centers on ONH in children.
The Magic Foundation- Organization for families of children with conditions affecting growth, such as adrenal and growth hormone insufficiency.
ONH/SOD Optic Nerve Hypoplasia/Septo Optic Dysplasia Parent Support- MAGIC—Facebook support group operated by the MAGIC Foundation for families of children with Optic Nerve Hypoplasia, Septo Optic Dysplasia and related conditions.
Parents of Teens and Young Adults with ONH / SOD – The MAGIC Foundation Another Facebook group for parents of teens and young adults.
Information on blindness and vision impairment.
American Foundation for the Blind- Major national non-profit organization that serves to expand possibilities for people with blindness and visual impairment. This organization has divisions concerned with improving literacy, education, and employment for all who are blind and visually impaired.
National Federation of the Blind- The most influential organization operated by people who are blind or visually impaired, with affiliates in all 50 states plus Washington, D.C. and Puerto Rico and over 700 local chapters. One of this organizations main special-interest affiliates is the National Organization of Parents of Blind Children, which supports families of children who are blind and visually impaired and produces Future Reflections, a quarterly publication for parents and teachers of children with blindness and visual impairment.
American Council of the Blind- Another consumer-operated organization of people who are blind and visually impaired with affiliates in all 50 states plus a number of special-interest affiliates.
American Printing house for the Blind- National organization providing a host of products and services for the education and training of the blind and visually impaired since 1858. This organization is the administrator of the Federal Quota Program, which is a repository of products and services for children with vision impairments available to designated agencies in each state that serve blind children.
Orientation and Mobility Training- Fact sheet on orientation and mobility training from the Texas School for the Blind and Visually Impaired.
ACB Radio- Website operated by the American Council of the Blind that offers live and on-demand audio programming by and for people who are blind online. This site includes a radio station that features music exclusively by blind and visually impaired artists as well as hours of live and on-demand programming on topics of interest to the blindness community produced from a “blindness” perspective.
Paths to Literacy for students who are blind or visually impaired- web site operated by the Perkins School for the Blind dedicated to offering strategies to enhancing literacy outcomes for blind and visually impaired students. This site features several articles on ONH, sensory processing difficulties and the Autism Spectrum and includes an article I wrote in 2018 concerning my experience learning Braille.
Sensory Processing and Autism Spectrum Disorders
Star Institute – Sensory Processing Disorder- Leading national treatment center for children with Sensory Processing Disorders. Provides a wealth of general information about Sensory Processing Disorder, but not specific to ONH.
Scottish sensory Center at the University of Edinburgh School of Education strives to promote effective practice in the area of educating children withsensory impairments and includes information on sensory integration.
Autism Society of America- Official Website of the Autism Society of America
Creating a Sensory Friendly Home- This page contains an overview of the home modifications for children and adults with Autism characteristics or sensory processing difficulties. (Link courtesy of Christy from Wonder Moms.org).
Resources for Kids in Trauma from the Sesame Street Communities- This page from the Sesame Street Workshop contains links to videos and workshops on children and traumatic experiences. Some of this material can be adapted to children with ONH. Link provided courtesy of Christy from Wonder Mons.
Coping with Covid Stress- Information from the Center for Disability Rights of the American Psychological Association. This link provided courtesy of Christy from the Wonder Moms Blog.
Neurodiversity.com- Website that showcases the accomplishments of people on the Autism spectrum and their struggles to live in the community at large from a uniquely Autistic perspective.
Wisconsin Medical Society Savant Syndrome Home Page- Operated by Dr. Darold Treffert, past president of the Wisconsin Medical Society, this Website is a crucial source of information on Savant Syndrome, in which people with sometimes profound disabilities demonstrate extraordinary abilities in highly-defined and specialized areas, such as the ability to calculate large numbers mentally. Of particular interest in the profile of Blind Tom, who demonstrated characteristics remarkably similar to children with ONH.
Assistive Technology-related Resources
Abledata- Federally-sponsored Website that provides objective information on assistive technology and rehabilitation equipment to people with disabilities, family members, caregivers, and professionals. This site contains information and resources for Autism, blindness and low vision, occupational and physical therapy, and speech /language therapy resources. A comprehensive guide to links to funding resources is also available which includes specific links to state resources.
Freedom Scientific- Freedomscientific is one of the primary producers of technology to enable people who have blindness or low vision use a computer and perform other important daily living activities. It’s two most well-known products are JAWS, a screenreader that reads information from many computer programs in synthetic speech, and MAGIC, a screen magnification program.
Humanware- Company that provides a wide variety of assistive devices for people who are blind or visually impaired, including video magnifiers, digital talking book players, and a full line of notetaking devices.
The Prentke Romich Company- The world leader in the development of augmentative and alternative communication devices (AAC). AAC devices help people with significant disabilities that impact speech and language to communicate more effectively.
The Braille Institute- Organization providing integrated educational, social, and recreational activities to people who are blind and visually impaired in Southern California.
Blind Children's Center- Los Angeles- Founded in 1938, The Blind Children’s Center in Los Angeles serves children from birth to school-age with blindness and visual impairments through a variety of programs in services. These include an infant program that provides school and home-based early intervention services, an educational preschool, a parent mentoring program, and therapeutic support services designed to enhance the self-confidence and self-image of young children who are blind or visually impaired. The center utilizes its expertise to serve families world-wide through support, education and research and has a catalog of 15 publications which can be ordered directly. One such publication, “A Unique Way of Learning”, details specific strategies of teaching young children with ONH. It is based on clinical observations of four children from the educational preschool who demonstrate the special characteristics of ONH and effective teaching practices.
Wrightslaw- One of the most comprehensive information sources available on special education law and advocacy available. It contains comprehensive information on the latest revisions to The Individuals with Disabilities Education Act (IDEA) as well as accommodations, advocacy strategy, and the impact of high-stakes testing and curriculum standards of No Child Left Behind on students with disabilities.
Council for Exceptional Children- The largest national organization dedicated to improving educational outcomes for students with exceptionalities, disabilities, and /or gifted students.
IDEA 2004 Fact Sheets- A link to a series of fact sheets from the U.S. Department of Education on the latest authorization of IDEA from the Parents Advocacy Center for Educational Rights (PACER) center in Minnesota.
Making Special Education work for your Child During Covid-19- Information from Harvard Health on strategies to support special education students during the Pandemic. Information and link courtesy of Christy at Wonder Mons.
A link to information on access to education for children who are blind or visually impaired from the American Foundation for the Blind.
Ohio Center for Autism and Low Incidence- Serves as a clearinghouse of information and resources for parents and educators of children with Autism and low incidence disabilities in Ohio (including children with ONH who have other challenges such as Autistic characteristics).
Medical Conditions Associated with ONH
National Organization for Rare Disorders, Inc.- Official Website of the National Organization for Rare Disorders, Inc. This site will generate a report on ONH with emphasis on the medical characteristics and research. However, the report is listed in the organization’s database as Septo Optic Dysplasia /De Morsier’s Syndrome and requires a nominal fee payable by a major credit card to access.
Pituitary Network Association- International nonprofit organization established in 1992 for people with pituitary disorders, their loved-ones, and the physicians who work with them.
Management of Children with an Adrenal Crisis- from the Medical College of Georgia- Website with information on managing children during an adrenal crisis. Also contains information on adrenal insufficiency and other conditions related to panhypopituitarism, such as hypoglycemia.
Adrenal Crisis Information- Link to information about how to prepare for an adrenal crisis. Also contains links to information on the Solu-Cortef shot and MedicAlert bracelets.
Solu-Cortef Injection Information- Link to information on how to give the Solu-Cortef shot.
Medic Alert- Official Website of Medic Alert.
Endotext- Site containing information on neuro-endocrinology, the Hypothalamus, and disorders of the glands.
Diabetes Insipidus Information from Medline= Information from the National Institute of Health’s Medline Database on Diabetes Insipidus.
Professional Organizations and Government Benefits
Social Security Administration- Offers two cash assistance programs used by some families of children with ONH: Social Security and Supplemental Security Income (SSI). Social Security is a monthly payment for children or dependents of people who are retired or disabled and is based on the parent or legal guardian’s earnings while working. Benefits are also available for children with one or both deceased parents. These are called survivor’s benefits. SSI is a program for children with low-incomes and disabilities that is funded from general tax revenues. In all 50 states, eligibility for SSI automatically entitles you and your child to receive Medicaid coverage. Medicaid is a health insurance program for people with disabilities and low-incomes that covers health insurance expenses as well as some other special supports such as durable medical equipment and supplies. Most people who receive Social Security benefits can receive health insurance through the Medicare Program, which provides different health insurance coverage and is administered by the Federal Government exclusively.
Center for Medicare and Medicaid Services- The federal program that funds and administers the federal Medicare program and each state’s Medicaid program.
Family Voices- National grass-roots information clearinghouse for children with special health care needs with information on the programs for these children that are available in each state. This site is particularly relevant to families with children that have Hypopetuitarism and other medical conditions associated with ONH.
PACER Center- Strives to expand opportunities and quality of life for children and youth with disabilities and their families. This organization provides several national model programs on advocacy, assistive technology, transition to work, and other programs crucial to the lives of young people with disabilities. The center is based in Minneapolis and most of their direct services to families are specific to that area and the state of Minnesota. However, their website is one of the most comprehensive sources of information on disability advocacy online.
Understanding Special Needs Trusts- This page provides a general overview of special needs trusts and their importance to the life planning process for people with developmental disabilities. This link provided courtesy of Christy from the Wonder Moms Blog.
National Library Service for the Blind and Print Disabled (NLS)- nLS provides talking books (specially recorded books on cassette tape and, increasingly, digital media) for people who are blindness and visually impaired. Only people with special cassette recorders or digital audio book players can access talking books from NLSTalking books are distributed through a network of local lending libraries in each state. Tape recorders and other equipment that people who are blind use to read talking books are available through local lending agencies, directly from non-profit organizations such as the American Printinghouse for the Blind (APH) and from some commercial vendors. NLS also provides books in Braille and offers a service called WebBraille, where users can download books electronically and read them using Braile output devices.
Learning Ally- Established in 1948 to serve the needs of blinded veterans, RFB&D is the world’s leading non-profit provider of talking books and is the only source of Textbooks for blind students from elementary school to post-graduate study in the United States. It was the first organization to provide talking books in digital format and now offers its materials for download by eligible subscribers. Learning Ally provides services for a nominal annual subscription fee to new members.
The Clovernook Center- Cincinnati, Ohio- The Clovernook Center has provided a variety of services to enhance the independence, opportunities, and quality of life of people who are blind and visually impaired since 1903. It has an expansive main campus facility in Cincinnati as well as satellite facilities in Dayton, Ohio and Memphis, Tennessee. Of special interest is the summer program for youth who are blind and visually impaired. This intensive six-week program provides daily living skills training and social and recreational opportunities for blind and visually impaired youth. I attended this program for three summers and was one of the first kids to participate. I learned nearly all the skills that I use every day to care for myself in this program, including dressing, tying my shoe, traveling with a white cane and using the bus.
The following are a few miscellaneous resources that mainly cover my own personal fixations as a child growing up with Autistic characteristics.
Phone Trips- A collection of historical recordings of telephone equipment from approximately 1968 to 1981. The recordings were made by a group of people that would drive to different towns for the purpose of stopping at pay telephones and recording the unique sounds that the switching equipment of the time made. This was a major fixation for me as a child, and there was a time when I could tell exactly where a person was calling from by the sound that the switching equipment made. The people that did the recordings and spent time “playing” with the phones during this period were called “phone phreaks.” Of particular interest are the three-part recorded introduction entitled “How I became a phone phreak”, the recordings on the Atlanta Trinity Step office, and the audio entitled “The Sounds of Long Distance.”
Telephone World- A website with information on telephone equipment from the invention of the telephone to the present. Included are recordings of sounds from historic and modern telephone equipment from the United States and abroad and information on the inner workings of the telephone networks. My particular fixation was telling how calls were routed through different locations along the local and long-distance telephone networks using the unique sounds of switching equipment and telephone recordings.
http://www.howardjones.com- Howard Jones was my absolute favorite rock musician growing up in the 1980’s, and I still keep track of his music to this day. His 1985 hit, “Things Can Only Get Better” was my personal anthem in the months after a particularly difficult series of behavioral meltdowns I had in the sixth grade.