As you know, last Friday and Saturday, June 15th and 16th, 2012, we attended the first cortical visual impairment (CVI) conference hosted by the Western Pennsylvania School for Blind Children!
The conference was called CVI: Visions of Change and featured a lot of excellent information about CVI! There were also a number of tables set up to highlight different vendors. You can see a picture of our table here. Having a table gave us a great opportunity to demonstrate how our app (Tap-n-See Zoo) works, talk about our book, answer questions, and meet some great people! We were amazed and humbled by the high level interest in our new book!
In addition to the tables, there were a number of presentations by notable experts in the field. Topics included:
- The Basics of CVI
- Intervention Strategies for each of the Three Phases
- Questions for Health Care Providers
- Inspirational Talk by Jeni Stepanek (Mother of Four Children with Disabilities)
- Neuroplasticity
- CVI and Deafblindness
- Orientation and Mobility for those with CVI
- The Reliability of The CVI Range (Dr. Roman’s CVI Assessment Tool)
- Promoting Systems Change for Students with CVI
- Little Idea Log (http://littleidealog.blogspot.com/ Great ideas from another parent)
- Little Bear Sees
- Using the CVI Range
While we can’t possibly talk about everything we learned at the conference, there were a few key items we took away that we thought were worth mentioning.
What We Learned about CVI:
As we work on spreading the word about CVI, we are frequently reminded how few people really know about CVI. Even those who have heard of it often have some misconceptions about CVI that can be damaging to children with CVI because they can interfere with appropriate intervention. We were reminded of a few common misconceptions during the conference and we will discuss these below:
- Black and white books, toys and pictures are good for kids with CVI.
This is a very common and particularly troubling one as many parents are told by well-meaning doctors and therapists to use a lot of black and white with their children with CVI. While some children with CVI may respond to black and white over time, they will have a MUCH easier time seeing color. Color is hugely important for children with CVI because color vision is usually preserved. The parts of the brain that are used to look at color are located deep in the brain on both sides, making them harder to damage. Red and yellow are very often the first colors that a child with CVI will see. Remember that the goal in CVI interventions is to provide the child with many opportunities to use the vision that she has. Unlike physical therapy, for example, the idea is not to challenge the child beyond their current abilities, but to give them frequent chances to use their vision, which will then allow it to grow and expand on its own. For many children with CVI, black and white is simply too difficult.
- The vision of a child with CVI changes constantly.
It is easy to see why many people believe this to be true. A child with CVI may appear to look at an object with relative ease one day and yet have a difficult time looking at the same object the next. Dr. Roman-Lantzy reminds us that it is NOT the child’s vision that changes, but something else that is making it harder for the child to use his vision. Perhaps the environment has changed. If a child is easily distracted by other sensory input, he will have a much harder time looking at an object if there is a lot of background noise, for example, than if they are in a quiet room. If a child is fatigued or not feeling well, it may also be harder for that child to use her vision. This does not mean the child’s vision has changed, but that some other factor is interfering with her using her vision. This is a very important distinction to make because it places the responsibility on us instead of on the child. If your child seems to be having a harder time using his vision, ask yourself what other factor may be at play. Is there some environmental adaptation you can make to make it easier?
- The vision of a child with CVI is like looking through a piece Swiss cheese.
This is an idea we’ve encountered on a number of websites and until recently, we didn’t realize that it wasn’t true. Instead, Dr. Roman-Lantzy describes the vision of a child with CVI as looking at a hidden object picture or a Where’s Waldo? picture. In other words, children with CVI can see everything, but may not be able to make sense of what they are seeing. The difficulty is not with seeing, but with understanding what is seen.
- Vision can’t improve.
One of the main goals of our work has been to spread a message of hope for children with CVI. With proper knowledge and intervention, vision can improve! A talk given by neonatologist Dr. Alan Lantzy reminded us of just how amazing the human brain is. He spoke about neuroplasticity: the brain’s ability to reorganize itself. What this means for a child with CVI is that even though there may be damage to visual centers of the brain, the brain can reorganize itself so that other areas can take over visual functioning. To us, this is truly an amazing phenomenon and the reason that we have so much hope for our Little Bear!
What We Learned about Life:
One of the highlights of the conference, on a personal level, was hearing keynote speaker Jeni Stepanek. From her son’s website (www.mattieonline.com):
Jeni Stepanek, Ph.D. — award-winning speaker & NY Times Bestselling author — is a noted advocate for personal and world peace, as well as children’s & families’ needs and rights in health & education. The author of “Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs,” Jeni’s inspirational message about hope, peace, disability, hospice, grief, support, parenting, collaboration, motivation, and spirituality has been carried by all media outlets.
Like her son, the late bestselling poet & peace advocate, Mattie J.T. Stepanek, Jeni has a rare neuromuscular disease, and relies on a ventilator and wheelchair for breathing and mobility. A noted guest on Good Morning America, Oprah, Larry King and the MDA Labor Day Telethon, Mattie created poetry and essays from age 3 until he passed away in 2004 at age 13, and published 7 books that became NY Times Bestsellers. Mattie is the youngest of Jeni’s four children. All four — Katie, Stevie, Jamie, & Mattie — died during childhood due to complications of the genetic neuromuscular disease Jeni unknowingly passed on to the children before she was diagnosed.
Jeni’s message for us was simple, yet profound: every person has a purpose. No matter how much time they spend on this earth or how many challenges they face while here, all people have a purpose. The question is, how do we measure a person’s worth? Is it by the abilities they have or by the lives that they touch? Personally, we choose the latter. By this measure, our little bear has a purpose larger than we ever could have imagined … and constantly growing.
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