How many other children have this disorder?
What causes ONH?
Is there a cure for ONH?
Is there anything I did to cause my child to be born with ONH?
Are there any support groups for families of children with ONH?
What services should be in my child /family member’s IEP?
What should I do if my school isn’t giving me the services my child needs?
As a parent or other family member, what can I do for my child with ONH?
Are there any advocates for families of children with ONH?
Question: How many other children have this disorder? .....return to top
We have no clear information about the numbers of children with Optic Nerve Hypoplasia (ONH). However, studies show that ONH is a leading cause of childhood blindness and visual impairment in the United States.
What causes ONH? .....return to top
There is no known cause for ONH. Researchers such as Dr. Mark Borchert from Children’s Hospital and Los Angeles are studying the factors associated with the development of ONH in children. What we do know is that there are possibly many factors in the environment that relate to births of children with ONH.
ONH affects all socio-economic groups equally and is not associated with the mother’s use of alcohol or other drugs. It is not usually genetic, though I am aware of a few groups of siblings that have ONH. There is no evidence to suggest that ONH is hereditary.
Is there a cure for ONH? .....return to top
There is no cure for ONH, though many children grow up to lead happy and productive lives.
Is there anything I did to cause my child to be born with ONH? .....return to top
As a parent, grandparent or other relative of a child with ONH, chances are that you are experiencing feelings of guilt, shame, and even some grieving for the loss of your child’s ability to lead a normal life. There is no reason to believe that ONH is caused by drug or alcohol use or any other choices that the mother made while pregnant. The fact is that we still have little understanding of the factors that can relate to your child’s condition. It is my observation that ONH could be associated with exposure to certain chemicals early in pregnancy. However, there is nothing in the published research literature that supports this directly.
Are there any support groups for families of children with ONH? .....return to top
FOCUS Families is the only international organization solely dedicated to families of children with ONH /SOD. It has chapters in the United States, the United Kingdom, Germany, and Australia. FOCUS Families operates the only Internet mailing list specifically established to discuss the challenges of raising a child with ONH /sod. The list has about 400 members and contains some adults who live with the condition and participate regularly. You can join the list from the Group’s Web site.
The Magic Foundation, which supports children with growth hormone deficiencies, also has a division that supports children with ONH /SOD who have endocrine deficiencies. Both FOCUS Families and the MAGIC Foundation have annual national conventions in the United States that are lively and well-organized.
What services should be in my child /family member’s IEP? .....return to top
The Individualized Education Plan (IEP) is required by federal law for any student of a public or private school identified as having a disability. The IEP is the blue print for documenting and reporting all services the child needs to attend school in the “least restrictive environment” possible. As a parent or guardian, your view of your child’s unique strengths and abilities as well as a thorough, multidisciplinary assessment of his /her ability to function in the classroom should drive the IEP.
Since ONH is such a diverse condition, it is impossible to include every support that a child will need at school. However a sampling of related educational services might include:
· Occupational or physical therapy for a child with sensory integration difficulties, impulsivity, tantrums, or Autism characteristics
· Braille instruction, including the use of such devices as the Perkins Brailler and the slate and stylus where appropriate
· Orientation and mobility training
· Social skills training
· Activities of Daily Living (ADL) skills training
· Instruction on the use of assistive technology applications, such as large print magnifiers, screenreaders, and note takers
· Career planning and preparation for post-secondary educational and vocational training, with emphasis on appropriate workplace behaviors and interactions.
What should I do if my school isn’t giving me the services my child needs? .....return to top
Though the numbers of children with diagnosed ONH are increasing dramatically, ONH is still one of the most misunderstood causes of childhood disabilities. Children with ONH can exhibit behaviors, such as meltdowns, hand-flapping, distractibility, and noncompliance that are often misperceived by teachers and other school staff. Some view these behaviors as manipulation or defiance deserving punishment. In fact, the child may be showing signs of fatigue due to hypoglycemia requiring immediate medical attention. He /she might be experiencing sensory overload, reacting to sound or another feature of the environment, or experiencing a severe headache or fatigue due to nystagmus and eye strain.
The President of ONH Consulting, Christopher Sabine, has attended numerous IEP meetings and case conferences as a professional service coordinator for youth with disabilities. He can work to educate school staff and other professionals about the implications of ONH in the classroom and resolve disputes with your school before they escalate. I would also highly recommend the book “Wrightslaw: From Emotions to Advocacy” by Pam and Pete Wright as an excellent guide to working with your child’s school. The book is published by Harborhouse Law Press and available from Amazon.com or directly from the publisher at http://www.wrightslaw.com.
As a parent or other family member, what can I do for my child with ONH? .....return to top
As soon as your child is born, he /she will need to have several different medical tests. If you’ve accessed this FAQ, it is likely that either your child has already been diagnosed with ONH, or you strongly suspect that your child has this condition. Since ONH is associated with endocrine deficiencies, your child should regularly be seen by an endocrinologist. He will perform several tests to check for levels of Cortisol, growth hormone, and other hormones essential for your child to develop normally. Your child should also have an MRI (magnetic resonance imaging) done to see if there are any structures of the brain that are missing or malformed. These might include the Septum Pellucidum and the Corpus Callosum. Many doctors will diagnose your child’s condition as Septo Optic Dysplasia (SOD) when these structures are affected. An MRI can also reveal whether your child has cysts or other abnormalities in the brain.
If your child is visually impaired or has other challenges, such as trouble with sensory integration, make sure your child begins receiving early intervention services as soon as possible to minimize the potential for developmental delays. Early intervention services are supports from trained professionals to help your child develop as normally as possible. Some communities begin offering these services immediately after birth. They can include:
· Vision services to help your child use his/her vision or compensate for visual impairment
· Physical and occupational therapy to help your child develop sensory integration
· Speech and language therapy to help your child learn communication, language and sometimes social interaction skills
· Orientation and mobility training to help your child navigate his /her environment.
In the United States, early intervention is mandated by federal law. A combination of federal and state tax dollars fund early intervention services, which are offered locally by a wide variety of non-profit and government agencies. These agencies can serve children with visual impairment or other disabilities. In Canada, these services are a provincial, and each province provides these services in different ways depending mainly on available funding.
When your child enters school, make sure that he /she is evaluated to see if any accommodations are needed to function in the classroom. These might include instruction in Braille, books in large print, books on tape (referred to as talking books) or other devices such as a closed-circuit TV (CCTV) that magnify print. Note that many children with ONH are very resistant to Braille and other daily living skills. This is typical for children without the sensory integration they need to process it.
Be sure that there is a comprehensive plan in place for administering medication during the school day. Procedures for responding to an adrenal crisis are also critical for children with pituitary insufficiency, and it is also important for school personnel and other professionals to understand the signs of an impending adrenal crisis or other potentially fatal medical emergency.
If your child is non-verbal or has difficulty with speech, make sure that this is being addressed by the school. I am aware of families who use a variety of alternative communication systems.
If your child tends to fixate on something they are very interested in, try to set limits on the time they spend on their interests. Expose them to as many age-appropriate activities. Many children with ONH are interest in music, and activities such as piano lessons are a wonderful way to help a child interact with others and learn valuable social skills. Some sports are also good for children with sensory integration challenges. These include swimming, running and some other gymnastics, bicycling, and horseback riding. Some older children with sensory integration challenges have even benefited from martial arts programs. All these activities and others can be adapted for children who are blind or visually impaired.
Make sure that your child has a good sense of self. Teach him /her about role models who are blind or have other types of disabilities. Help your child develop a sense of his /her own abilities and strengths. Encourage your child to take an active role in the learning and educational process. This might include having him /her order talking books or other materials in accessible format when appropriate or be responsible for a certain chore or household task.
Are there any advocates for families of children with ONH? .....return to top
ONH Consulting is the only national organization that offers direct advocacy services geared exclusively for families of children with Optic Nerve Hypoplasia in the United States and Canada. In each state, there are protection and advocacy organizations that are designed and funded to help families of children with disabilities navigate the complex and sometimes forbidding landscape of hospitals, schools, health care providers, and human service agencies. We can help you work with staff of your local protection and advocacy agency. We can also advocate for your child by attending meetings via telephone conference, helping you make referrals, and educating you and your local team of service providers to help them meet your child’s unique challenges.