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

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

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

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

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

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

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

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

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

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

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

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

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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

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

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

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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

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….

KRISH

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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