Sonja Biggs Educational Services, Inc. -

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Bones & LCA

It is a wonderful thing that Leber's Congenital Amaurosis is receiving recognition on a popular TV show called "Bones." As a parent of a child with LCA, there are a few things I want to reassure you of. First of all, LCA is caused by a recessive gene. It is a rare disorder. Parents probably will not even know they are a carrier during the pregnancy because usually no one else in the family has ever had the eye disease. Second, I appreciate the fact the family portrayed had a positive spirit about having a child who may be blind; however, there is no reason a child or adult who is blind cannot be a painter, doctor, musician, teacher, actor, singer, dancer, CEO, engineer, mayor, or whatever the child dreams of having as a vocation. There are so many doors open for children who are blind because of all the technology available today.
Children are also taught a skill set that allows them to be successful academically, socially, and in their everyday lives. This skill set is called the Expanded Core Curriculum and it is very important for the success of a blind child growing up to be a successful, accomplished adult. Below is a description of the Expanded Core Curriculum:
ExpandedCore Curriculum
Assistive Technology: Students learn specialized technology such as screen readers, note takers, typing, laptops, scanners, embossers, clarity, etc.
Compensatory: Students learn to read using Braille or other forms of communication.
Career Education/Transition: Students learn how to go about accessing their chosen career path through education, job skill training, etc.
Independent Living Skills: Students learn how to live independently from getting dressed to fixing meals.
Orientation and Mobility: Students work with an O&M instructor learning how to navigate their home, school, and community independently. This includes learning how to access public transportation.
Recreation and Leisure: Students learn how to be a part of after school sports, PE classes, and other activities of interest.
Self-determination: Students learn how to advocate for themselves and become assertive in their home, school, and community.
Social Interaction Skills: Students learn how to interact socially with others including using body language, facial expressions, hand gestures, group and individual interactions.
Visual Efficiency Skills: Students learn how to use what vision they may have to their advantage, in addition to learning blindness skills. 
Finally, there is a lot of research going on right now that could one day provide a cure through gene therapy. Corey Haas, with the RPE65 gene has already experienced an increase in his vision in one eye. He will be undergoing another surgery in his other eye April 2011. For a child who is blind it is really just learning how to do things a little differently to get the same result a sighted child would have. Success is still the same. 

2 Comments to Bones & LCA:

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Jennifer Pletcher on Tuesday, March 22, 2011 6:14 AM
Hi! I just wanted you to know that would like to quote you above on my blog - if that is okay! (I will link back to you and everything). I think what you stated about LCA and Bones is PERFECT - and I too have seen a spike in my blog traffic from the searches, so I think it is good to put out there!
Reply to comment
Sonja Biggs on Saturday, March 26, 2011 2:59 PM
Jennifer, you are more than welcome to quote me in your blog. Have a wonderful day!

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