ONH Consulting provides a full range of support, advice, consultation and advocacy services to families of children with Optic Nerve Hypoplasia (ONH) and related conditions. Our mission is to enable children with Optic Nerve Hypoplasia to achieve to their fullest potential and participate in their communities to the fullest extent possible. Our services strive to enable children with ONH to live in an environment that fosters their development at a level comparable to their peers without disabilities. Our goal is to serve as a crucial source of information, consultation, and advocacy for children with ONH, their families, and the professionals who work with them.
We provide three basic services:
- Information to families on the unique development of children with ONH from the perspective of a professional social worker and the insights of an adult with ONH
- Individual consultation regarding the unique and individual needs of children, including behavioral supports, educational planning, and strategies to foster the development of each child to the fullest extent possible
- advocacy services to help families obtain the services and support their children need to succeed in today's ever-changing and fast-paced classroom environment and navigate the sometimes treacherous landscape of schools, social service agencies, and health care providers.
ONH is a condition that is often poorly understood, and their is little knowledge concerning its impact on a child's life. Though ONH is becoming one of the most common causes of childhood blindness and visual impairment, many professionals and the general public have little understanding of our unique characteristics. School personnel may see the child who refuses to work when fatigued due to low blood sugar or overwhelmed by the sometimes chaotic environment of a typical classroom as manipulative or uncooperative. They may see the child as deserving punishment, not in serious need of medical intervention or other supports he needs to make it through a typical school day. As a parent or family member, you are probably dealing with an overwhelming range of emotions and have no idea where to turn or what to expect from your child. Our Consultation services are designed to help families understand the often puzzling and overwhelming behaviors that many of our children experience from the unique insights that only an adult with ONH can share. We help families understand what it all means- from medical terminology to fixations and hand-flapping. Our advice and consultation comes from a lifetime of experience of living in the world of ONH and the professional knowledge of a Master's-level social worker.
Whether your child is just diagnosed or dealing with a particularly difficult challenge, having a condition like ONH can be like living in a foreign country. The patchwork quilt of medical, educational and social services that our children often rely on is often fragmented, complex, and difficult to navigate. Professionals working with a child with a health condition often fail to see the child as a whole person. At ONH Consulting, we give you all the information and advice you need to understand the unique aspects of your child's condition, their strengths and weaknesses, and the resources in your community that can help your child grow and thrive.
The President of ONH Consulting has attended numerous individualized education plan (IEP) meetings. He has helped children with a wide range of health conditions as a professional case manager and advocate. He can take part in IEP or other professional team meetings, refer you to specific organizations in your community, and work with the professionals serving your child to help him obtain the critical supports he needs to succeed.
The cost of a subscription entitles you to unlimited services via telephone, e-mail, and the World-wide Web. This includes direct work with schools and other professional services via teleconference. We are willing to travel to your child's home or school under some circumstances. Travel to your community to work with your child can be arranged on a case-by-case basis. Please contact us for details.
We hope that ONH Consulting will be your guide to the challenges and rewards of raising your child with ONH. We look forward to working with you!