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
• A miscellaneous category of links to information about what interested me as a child with ONH and Autistic Tendencies

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 jsabine@cinci.rr.com, 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.

Focus Families - International support group of families of children impacted by Optic Nerve Hypoplasia with chapters in the United States, the United Kingdom, and Germany.

The Magic Foundation - Organization for families of children with conditions affecting growth, such as adrenal and growth hormone insufficiency.

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 Printinghouse 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.

Division of Ophthalmology, Children's Hospital Los Angeles- Official Website of the Division of Ophthalmology at Children's Hospital Los Angeles, the largest clinical program devoted to the treatment of children with eye conditions in the United States and home of Dr. Mark Borchert, the primary researcher studying the medical aspects of the condition of ONH.

 

Orientation and Mobility Fact Sheet from the Texas School for the Blind and Visually Impaired - 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.

Nystagmus Association of America-  Non-profit organization established in February 1999 to serve people affected by nystagmus and their families.

 

Sensory Integration and Autism:

The SPD Foundation - The Spd Foundation is currently the primary source of information on sensory integration and sensory processing disorders on the Web.

 

Vision Help: Vision Therapy Information & Referral The primary source of information on optometric vision therapy on the Internet. Vision therapy is generally provided by optometrists, occupational therapists, and sometimes other professionals and strrives to improve the connection between the eyes and the brain and the way the brain processes visual and vestibular input. This site contains a library of articles and research literature on vision tperahy and a database of professionals that practice it in the United States.

   

North American Riding for the Handicapped Association (MARHA) - NARHA is a national non-profit organization that promotes the benefit of
the horse for individuals with physical, emotional and learning disabilities.

Scottish Sensory Center - The Scottish sensory Center at the University of Edinburgh School of Education strives to promote effective practice in the area of educating children with sensory impairments and includes information on sensory integration.

Autism Society of America - Official Website of the Autism Society of America

 

The Handle Institute- Natural, gentle treatment for Autism, ADHD, Traumatic Brain Injury, and other neurologically-based condition. The Handle Institute is a holistic approach for the treatment of Autism and other neurologically-based condition by Judith Bluestone, who herself is an adult with Autism that went undiagnosed until adulthood. Her book, "The Fabric of Autism", is a "must read" for parents of children on the Autism Spectrum. Several parents of our children have explored Handle's techniques and found them useful for reducing Autism-related behaviors and developing communication skills.

 

  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.

Official Website of Daniel TammetWisconsin - Daniel Tammet is a UK-based provider of specialized online language tutoring services who lives and operates on the Autism Spectrum and has a number of splinter skills, including the ability to learn languages, calendar calculation and musical abilities. In March 2004, Tammet broke the world record for his recitation of Pi to the 22,500th decimal place for a UK Epileptic Society fundraiser.

 

Tenple Grandin Home Page - Official Website for Dr. Tenple Grandin

 

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 is the profile of Blind Tom, who demonstrated characteristics remarkably similar to children with ONH.

The Savant Academy - A small, Los Angeles-based non-profit organization that aims to foster the development of children with ONH with extraordinary musical abilities.

American Music Therapy Association Homepage - Official Website of the American Music Therapy Association. Music therapy is an established health profession that uses music to address the physical, cognitive, and emotional needs of children with adults with various disabilities. Many parents and professionals working with children and youth with ONH have used music therapy to help develop more appropriate and functional communication, social, academic, and life skills.

Prelude Music Therapy - Texas-based organization whose mission is to serve children and adults with disabilities and health conditions through sharing information, publishing effective music therapy strategies, and conducting workshops and presentations to professionals, families, and students both in the Dallas –Fort Worth area and nationally. This site contains information on incorporating music therapy into the individualized education plan (IEP), its use in health care and professional ethics.

Biography of Blind Tom - Biography of Thomas Bethune (also known as Thomas Wiggins or Blind Tom), who was a prodigious African American pianist who demonstrated many of the characteristics of ONH. This site contains information about his life, quotes from Mark Twain, who observed many of his performances, and links to resources with actual accounts of Blind Tom demonstrating behaviors that might be associated with ONH and Autism characteristics.

 

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. This guide was compiled in 2001, but much of the information is still relevant.

Alliance for Technology Access - National network of private assistive technology resource centers and vendors of assistive technology for people with disabilities.

State Assistive Technology Access Program Information - Information from the Rehabilitation Engineering Society of America’s Website on government programs in each state and territory that help people with disabilities and their families to access assistive technology. These programs provide low-interest loans to people buying devices such as screenreaders.

Freedom Scientific - Freedom Scientific 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.

Education Resources

Braille Institute of America - Los Angeles - 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.

Blind Babies Foundation-  The mission of the Blind Babies Foundation is to provide programs and services that enable and empower families, professionals, and the broader community to meet the unique needs of infants and children who are blind, visually impaired, and have visual impairment and other disabilities.  Since 1949, this organizations "Off to a Good Start" program has provided a full array of early intervention services to young children with blindness and visual impairment in Northern and Central California, including the San Francisco Bay area. The organization was one of the first to provide early intervention services to young children with blindness and visual impairment.  It also has initiated the Model Registry of Blindness and Visual Impairment.  To date, this registry is our only source of data on the incidence of ONH and other causes of blindness and visual impairment in children in the United States.  This site contains information on the foundation's programs and services as well as excellent fact sheets on ONH and the importance of early intervention.

Families & Advocates Partnership for Education (FAPE) - Aims to improve educational outcomes for children with disabilities by linking families, advocates, and self-advocates to information about the Individuals with Disabilities Education Act (IDEA)

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.

Policy Statement on access to education - American Foundation for the Blind
A link to information on access to education for children who are blind or visually impaired from the American Foundation for the Blind.

SKI-HI Institute - Utah State University - A unit of the Department of Communicative Disorders and Deaf Education of the College of Education at Utah State University in Logan, Utah. It provides family-centered outreach and curriculum resources for children with duel/ multi-sensory disabilities (such as Deaf-blindness), their families, and educators in Utah and nationally.

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.

The Diabetes Insipidus Foundation - The mission of the Diabetes Insipidus Foundation of America is the improved treatment, prevention and ultimate cure of all forms of Diabetes Insipidus through research. 

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 Hypopituitarism and other medical conditions associated with ONH.

Special Needs Resources Directory, Center for Infants and Children, Cincinnati Children's Hospital Medical Center - This is a very comprehensive, annotated, and searchable directory of Internet resources for children with special needs and disabilities. While this directory is geared to the Greater Cincinnati Tri-state area, it includes many national and international resources.

  

National Dissemination Center for Children with Disabilities - Provides information to the nation on disabilities in children and youth, programs and services for infants, children, and youth with disabilities, IDEA, and effective, researched-based practices to support children and adolescents with disabilities. Contains fact sheets for each state on federally-funded public and non-profit services, including parent training and information centers, protection and advocacy agencies, and contacts at state departments of education.

Parent's Advocacy Center for Educational Rights (PACER) - 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 web site is one of the most comprehensive sources of information on disability advocacy online.

Healthy and Ready to Work - National organization that focuses on helping people understand the fragmented and complex systems that drive health care for youth with disabilities. It also strives to foster awareness of how youth with disabilities can take charge of their own health care. Tools for service providers to assist youth to make informed decisions about their own health care are also available.

National Library Service for the Blind and Physically Handicapped (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 NLS Talking 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 Braille output devices.

Recording for the Blind & Dyslexic (RFB&D) - 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’s library includes over 104,000 titles on all subjects and served over 137,000 borrowers with print disabilities in 2004. It was the first organization to provide talking books in digital format on specially produced CD’s. RFB&D 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.

Miscellaneous Resources

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.” You will need the free Realplayer from Real Networks or a compatible audio player to listen to these recordings online.

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.