1. Partners on the Journey
A TVI and Family’s
CVI Experience
from
Birth to Age Three
Gunjan Rastogi-Wilson and MaryAnne Roberto

2. Poll

3. The CVI Journey The Journey Begins: Setting the GPS
Bumps Along the Road
Pedal to the Metal
The Road Ahead

4. The Journey Begins Krish was born April 30, 2012 26 week, 4 day twin
Birth weight: 1 lb. 5.8 oz
Co-morbidities
Grade 2 IVH
Stage 3 ROP
Periods of hypoxia with prolonged
intubation
Chronic lung disease
Failure to thrive
GERD

5. The Journey Begins Early Intervention
Krish was evaluated for EI services
Physical Therapist began working with him at about 5 months of age
Concerns about Krish’s vision after attending a CVI workshop given by MaryAnne Roberto
Referral for vision services

6. CVI Guiding Principles
Setting the GPS
Krish was sound asleep for the initial visit
Parent conversation regarding Krish’s vision, especially in comparison to his twin raised concerns
Birth history and neurological diagnoses raised red flags for CVI
Parent Interview (Roman-Lantzy, 2007)
CVI Range: Observation and Direct Assessment conducted over the next few weeks
Rating I score: 1.75
Rating II score: 1.5
CVI Guiding Principles

7. Bumps in the Road How did we get here? Why us?
Guilt, denial, acceptance
Family support system denial
Learning to cope as a family
Sensory overload and medical issues
Caring for the other kids
Therapies, scheduling and sleep deprivation

8. Taking the First Steps: Intentionality and Reciprocity
Built CVI interventions into family routines
CVI characteristics taught and demonstrated slowly and practically
The need to read Krish’s cues as well as the family’s cues
Meeting the family where they are
Respect for the family as a whole

10. Poll

11. Destination: Diagnosis
Medical diagnosis was important
Developmental Pediatrician
Low Vision Clinic
Neuro-Ophthalmologist
Pediatric Ophthalmologist
Pediatric View Program

12. Moving on Down the Road: Phase I to Phase II
Krish moved quickly from Phase I to Phase II
Integrated therapy suggestions into family routines
Linking Phase I strategies to Phase II activities
Began Orientation and Mobility
Complexity of Faces

13. Moving on Down the Road Control of the Environment Vision for Function
Collaboration with therapists
Developing strong plans for implementing CVI strategies

14. Pedal to the Metal: Phase II to Phase III
Phase III strategies
Salient features
Picture recognition, identification and comparative thought
Complexity
Motivation
Siblings
Technology

15. Full Speed Ahead
Approximately 2.5 years from diagnosis, Krish was in Phase III
Success with the Ipad
Chose pictures that interested him to motivate
Visual memory helped with Novelty characteristics
Orientation and Mobility

16. Poll

17. Traffic Stop!: Transition
The Transition Process
No CVI training
Invalid assessments
IEP debacle
Fight for appropriate services
Need for a strong CVI IEP
Brain MRI

18. The Road Ahead: Expectation of Change
Progress continues, but it is slower as Krish uses his vision throughout all his routines
Complexity is…complex!
Continue to follow CVI Principles
Communication skills help Krish to tell us what he sees

19. The Road Ahead: Expectation of Change
Playground video
Navigating new spaces
Social Issues
Educational concerns
Fatigue
Ongoing complexity issues

20. Poll

21. What Worked: A Glance in the Rearview Mirror
A professional and collaborative team
Access to a trained TVI
Access to Dr. Roman for diagnosis and support
Time off from work
Supportive spouse

22. What Worked: A Glance in the Rearview Mirror
CVI Mentorship and continued training
“Never again”
Gunjan and Jim’s willingness to support Krish
A team willing to learn and implement strategies for CVI
Number one reason for success….

23. KRISH

24. Poll

25. Krish's CVI Journey Video 2017
A big thanks to:
Joy Wilson (current TVI) 
Jim Rastogi-Wilson (video & technical support)
Krish's CVI Journey Video 2017