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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Crystal Johnson, TAPVI Secretary

Abstract: A parent of three teens with Retinitis Pigmentosa shares her thoughts about the NAPVI 2015 National Family Conference.

Keywords: blind, visual impairment, parenting, families

 

The NAPVI 2015 Conference in Chicago was a very informative and touching experience for me and my husband, Jason. We have three boys affected by retinitis pigmentosa (RP) and have been learning about the disease for the past six years while trying to keep up with our kids and decide exactly what they need, why they need it, and how they need it for it to get done.

We listened to doctors that are dedicated to finding ways to prevent and treat different eye diseases. We heard about stem cell research, gene therapy, neuro-protective factors and photoreceptor transplantation. It was refreshing to learn about the progress that has been made in research. The doctors shared the outcomes of several case studies. Parents were warned to choose wisely before including their own child in a research study. Being in a research study in the early stages may prevent your child from participating in future more promising studies. Surgical studies particularly are concerning because they could cause irreversible damage.

We received information about the transition to college and scholarship opportunities. We learned how important it is for students to be connected to school and the community, to be prepared to learn and participate and to be ready for all opportunities.

Matt Simpson from USABA (United States Association of Blind Athletes) was one of the keynote speakers. He spoke about growing up blind and wanting to play sports. He was extremely inspiring. Our kids are very athletic and involved in school sports and we worry about what will happen when that is no longer available to them. With USABA there is an answer and we are excited to follow up and get our sons involved in this organization at the local level.

We attended a FamilyConnect session that showed how the website links families to information, help and support. They asked for feedback from parents so they can be sure the website is relevant. We met Emily Coleman who is a parent of a child with a visual impairment and a teacher of the visually impaired. Emily responds to questions and comments posted on FamilyConnect and has her own blog.

Everyone at the conference was so welcoming. I plan to keep in contact with some of the wonderful families we met from a variety of states. The information was overwhelming and I’m trying to sort through all of it. The most inspiring were the other families. I’m learning to be more patient with my children.

It’s not easy to understand what our children are going through on a daily basis. I don’t know what to expect in the future but that will not stop me from learning. I realized that a truly special child is one that overcomes anything that tries to stop them no matter the disability. When the child acts like it’s no big deal on top of it…that’s inspirational. I’m grateful to have had the opportunity to attend this conference and I encourage others to join the NAPVI families.

Go to “Faces of TAPVI” on Facebook for more information.

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