parent advocacy

A Mother’s Journey to Understand Her Son’s Vision

This is a wonderful video presentation from the mother of Arran, an eight year old with CVI. For years, she struggled to understand how her son “sees” the world. She was keenly aware of his behaviors yet professionals provided no answers. Arran lacked visual attention, reached without looking, hated busy places, hated loud places, hated anything new, and struggled with visual complexity. This confusing kaleidoscope of visual information caused her son to react by screaming, biting and scratching to communicate his distress. Over time, Helen understood that her son had CVI. Understanding the impact of the CVI visual characteristics helped Helen advocate for supports so learning could be perceived, be meaningful and occur in an environment with reduced visual confusion.

https://cviscotland.org/mem_portal.php?article=80

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Rebecca Davis: Parent Perspective on CVI

This webinar speaks to parents and service providers with great insight to the parent perspective on CVI. Rebecca Davis is a parent of an 11 year old child with CVI. She tells the story of the journey with her daughter with honesty, full feeling and deserved frustration in her attempt to navigate the system to get services to help her daughter. She touches on the federal law as it relates to students with CVI with IDEA. She discusses the need for effective identification, assessment and service to students with CVI. She discusses access for students and how parents can advocate for that access.  She discusses a CVI Action plan to monitor that access by insuring competent practitioners are members of the educational and medical teams. Most of all, she pushes for creation and expansion of the CVI Community of parents to lend a louder and louder voice that demands action.

http://www.perkinselearning.org/videos/webinar/cvi-parents-perspective

Improving Vision: Partners in the Journey

I just signed up for this free webinar from Perkins eLearning

October 18th, 2017 11:00-12:00

This is a webinar presented by a TVI who is CVI Endorsed (Perkins-Roman CVI Range Endorsement) and a parent of a child with CVI. It will document the collaborative work of improving vision for a child with CVI.

Can’t wait to see it!

If you can’t participate at that time on that day, the webinar will be available after the session to view.

http://www.perkinselearning.org/videos/webinar/partners-journey-cvi-experience-birth-age-3

Rebecca Davis: Parent blog

Please check out the latest parent blog: CVI Momifesto at

https://cvimomifesto.com/?wref=bif

The subtext of the blog is “Building a Community of Parents of Children with CVI”

Historically, it is the work of parents, organizing and advocating that causes changes in the service to children. I think of the work of parents of children with autism as they organized and advocated for better research, better identification, better funding and more paid services for their children. The parents of children affected with RETT syndrome and related disorders are another wonderful model group for parent advocacy. They came together to advocate for awareness of RETT syndrome, RETT research and funding and they created assessment centers all over the country to serve their children.

Parents with children affected by CVI need to do the same. They need to come together with one voice that will bring the topic of CVI to the forefront. I monitor many Facebook pages that parents have created. They share heartbreaking stories of navigating the misinformation from medical professionals and educators as they seek the best services for their child.

The information about CVI is now decades old and building everyday. Why does it fall on the shoulders of parents with the least free time to organize this effort to help medical professionals and educator understand CVI and how CVI affects learning?  Professionals who understand CVI are out there but they are not sitting at your child’s IEP. That is where the advocacy must begin.

As parents and professionals who understand CVI, let’s begin to build the documented evidence for the IEP process that fosters the diagnosis of CVI. Let’s make sure the students are assessed using the correct tools such as the CVI Range (Roman-Lantzy). Let’s make the CVI Endorsement (through Perkins School for the Blind) mandatory for professionals working with each child. Let’s make sure there is not “vision time” but consideration of visual needs around the day and across the curriculum.

Check out Rebecca’s blog!