Adventures in Advocacy / NE AER / Part 3

Be a life long learner about CVI.

Be a life long learner about the brain.

Ellen Mazel, the CVI Teacher (https://cviteacher.wordpress.com), offers this advice to parents of children with CVI and to the teachers who work with them.

In her presentation at the Northeast AER Conference, Ellen shared information on learning assessments and intervention strategies from her extensive experience as a Cortical Visual Impairment Advisor and a Certified Teacher of the Visually Impaired.

Her audience primarily consisted of TVI and COMS, however, everything about the presentation resonated for me as a parent.  Watching presentations from teachers who know CVI always help me broaden my perspective and recharge my batteries.  It gets discouraging being the only person at an IEP meeting who knows what Cortical Visual Impairment is and how it negatively impacts my daughter’s learning.

Sometimes, after a particularly frustrating day, I think, maybe, I am just kidding myself.  Trying too hard.  My girl is a complex kid.  She is non-verbal and has an additional diagnosis of autism.  We are struggling to find a consistent method of communication.  We do not get a lot of eye contact.  Interaction takes time and effort.  It is hard to read her.  It is hard to know what she understands.  

It is all too easy to develop low expectations for a complicated kid like her.  I have fought against low expectations in IEP meetings and in teacher-parent meetings, yet I have struggled to learn how to reach her myself.  

Ellen’s presentation reminded me that this is an ongoing journey.

Regarding the perspective of the parent/teacher:

• The importance of presumed competence and eye contact.
  • CVI masks cognitive ability.  Our children are often not able to maintain eye contact.  (Children with visual impairments cannot be accurately assessed by traditional cognitive tests.  IQ tests are not going to work on this population of children.) 
  • Research has shown that children who do not maintain eye contact get far less social interaction and attention from caregivers and teachers.  Be aware of this tendency to interact less with a child who does not maintain eye contact.
  • Since we cannot tell what a child who is not maintaining eye contact understands, we have to presume that the child understands and continue to teach the child in an accessible way.  
• If we expect improvements, we will get improvements. The minute we do not have expectations, we are guaranteed not to get improvement.
• Read articles and attend presentations.  – Research about CVI and the experience offered by CVI Range endorsed teachers will be found at conferences and in journals before you will be able to find it in a book.  

Regarding IEPs and Assessments:

• The CVI range endorsement is the beginning of your journey NOT the end.  
  • Yes, we need to demand a teacher who has completed the Perkins-Roman CVI Range endorsement, however, it is only the starting point.
• IEPs need to say “brain based visual impairment,” when diagnosed, by whom, the score, and the result of the Functional Visual Assessment (as it relates to CVI).  
• When assessing a child, Ellen uses the CVI Range (Roman), Dr. Gordon Dutton’s survey, and Matt Tietjen’s “What’s the complexity” framework.
• Remember that the parents’ interview gives all important visual history – if vision has improved – consider CVI
• Best practice accommodations and modifications should be based on the CVI Range score 
• Strategies need to be embedded throughout the day
• Ellen puts together a salient features presentation so everyone on the child’s educational team uses the same language.
• As a consultant, she advises that the IEP includes a 1 hour in-service about CVI and a 1 hour in-service about how CVI affects this particular child
• Embed the theory that there is something visual in front of that child all the time.
• Use more CVI supports in place when developing weaker visual fields.
• Introduce yourself and use the child’s name so she knows you are talking to her
• Limit touching and moving children while they are trying to look.

I’ll end with Ellen’s explanation of “infused advocacy,” or teaching the children how to problem solve for themselves.

Parents and teachers can start teaching a child to become a self-advocate by teaching her about the characteristics of CVI and by including her in the process of making her own accommodations and modifications. When a child understands that how she perceives the world is different from other people, she can learn to articulate her unique needs. She could ask other children to say their names when they approach her to help her identify them.   She could explain to her mom that cluttered rooms make her feel anxious or scared. She could tell her teacher that new places are confusing and ask for extra time to get to know a novel environment.

This part of a child’s education, learning how to articulate her needs, is so important.  We spend so much time talking about the kids.  Listening to them (or, in the case of a non-verbal children, quietly observing them) is even more important.

This is a fascinating and busy time in the history of Cortical Visual Impairment.  There is a solid foundation of knowledge and a growing current of educational strategies and research.  There is an active and vocal community of families around the world.  There are teachers who can guide us!

At the center of all of this activity remains the children who have to be equal partners in putting together the puzzle that is their picture of the world.