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Partners on the Journey

Partners on the Journey. A TVI and Family’s CVI Experience from Birth to Age Three Gunjan Rastogi-Wilson and MaryAnne Roberto. Poll. The CVI Journey. The Journey Begins. Krish was born April 30, 2012 26 week, 4 day twin Birth weight: 1 lb. 5.8 oz Co-morbidities

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Partners on the Journey

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  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

  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. Setting the GPS CVI Guiding Principles • 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

  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

  9. Poll

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

  11. 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

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

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

  14. 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

  15. Poll

  16. 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

  17. 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

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

  19. Poll

  20. 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

  21. 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….

  22. KRISH

  23. Poll

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

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