ONH Consulting Teaching Growing Changing

8-06 August ONH Consulting Newsletter

Aug 21, 2006 at 02:45 pm by Christopher

I would like to thank you all for your continuing patronage of ONH Consulting.


Currently, a number of things are going on behind the scenes to spread the word about our business. First of all, I’ve been invited to conduct a presentation at one major national conference next year. I’ve also spoken with several agencies that are interested in further information on our services for families of children with Optic Nerve Hypoplasia. Finally, I am happy to announce that the Texas School for the Blind and Visually Impaired is publishing a feature story on our services in its Summer 2006 newsletter for families and educators.


On July 6, 2006, we officially launched our new server and fee structure. The new fee schedule will NOT affect those of you who were subscribed to our services prior to July 1, 2006. Outside of a few bumps with the accessibility of some of the HTML editing components of my Web development software, the transition to the new server went off without a hitch. I WOULD LIKE TO EXTEND A SPECIAL THANKS TO JOHN McDaniel and the dedicated staff of Bondware Web Solutions in Nashville, Tennessee, for hosting our site and giving me all their technical support for what has to be one of their more unique projects.


I held off on publishing the news letter until now for two reasons. First, as some of you might already know, I have never been tested for endocrine insufficiency. As all of you know, testing for hormone deficiencies such as Growth Hormone and Cortisol by an endocrinologist is essential for all children with ONH /SOD. There is a significant gap between child and adult-oriented health care, and most pediatric providers do not see adult patients. Since most people with SOD nowadays are diagnosed in childhood, finding an endocrinologist knowledgeable enough to understand why I need to be tested was very challenging in the least. In my case, it involved several professional contacts, and ultimately, the director of our state agency that serves children with chronic health conditions.  I was able to schedule an initial consult with an endocrinologist who has apparently worked with patients with Septo Optic Dysplasia (SOD). My initial consultation is set for later this month.


I plan to devote a special issue of our newsletter to transition from child to adult health care providers. This is a significant issue for all children with medical conditions. As a parent of a child with ONH, you need to begin preparing your child for the adult world early.


In other news, I wanted to point out a new study from Adam Okelford, Director of Education at the Royal National Institute for the Blind in London, England, on the musical interests and special abilities of children with ONH /sod. Cindy Rose from FOCUS Families handed out copies of this study to everyone attending our annual conference in Baltimore. This study investigates parents of children with diagnosed ONH and SOD in the United States and the United Kingdom concerning their children’s musical interests and abilities as well as the importance of music in their lives. This study was brought about by many parents' striking observations of strong musical interests and innate and highly advanced musical abilities in many children with ONH and SOD, visual impairment, learning differences and Autism characteristics. This study also examines the extent to which opportunities for music training are provided to children with ONH as well as public recognition of their abilities. You can purchase this study report for a nominal fee from the Institute of Education, University College London. You can access their publications catalog at http://www.ioe.ac.uk/publications or by clicking here.


Finally, on August 3, The U.S. Department of Education, Office of Special Education and Rehabilitative Services published the final regulations implementing Part B of the Individuals with Disabilities Education Improvement Act of 2004, commonly known as IDEA. This law dictates how students in special education receive services. Part B is the specific title of the law that concerns IEP’s, initial and continuing eligibility evaluations, due process, meetings, discipline and placement, and many other issues. It is the core piece of legislation impacting the rights of children in special education programs in the United States.


These regulations implementing how school districts should abide by the law were published on August 15. For more information, you can visit the section of the Wrightslaw Web site dedicated to these new regulations at http://www.wrightslaw.com/idea/law.htm or by clicking here.


I thank you again for your patronage and support of ONH Consulting and remind you to stay tuned for my special newsletter on adult health care and transition.




Christopher Sabine


ONH Consulting, LLC

Sections: Adult Perspectives