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Case Study: Jack

Cortical Visual Impairment (CVI)/Optic Nerve Hypoplasia/Optic Atrophy/Ocular Motor Apraxia

Jack’s Story
as told by Elizabeth and Kade, Jack’s parents

Jack's Family
Jack’s Family

Within the first few weeks of Jack’s birth we had a suspicion that Jack was visually impaired if not blind. Jack had no reaction when Kade would put his hand up to Jack’s face. Jack wouldn’t blink or show any sort of response. It was like he had no idea anything was there. There was no visual threat response. Jack only responded to sound or touch.

Jack was often upset when he was younger and he rarely opened his eyes because he cried/screamed so much. He needed to be held at all times. Looking back on it, I think that’s because he had no vision and was terrified of the unknown world around him.  Jack probably felt safest in our arms. He wouldn’t lay on his back to look at a mobile because he had to be held. He had no interest in playing because he was always so severely upset—not to mention all the toys we were using were multiple colors and extremely complex.

At five months while admitted to Children’s Hospital for Infantile Spasms and brain malformations our suspicions were confirmed. Jack was diagnosed with Cortical Visual Impairment (CVI). The neurologist pointed us to Anchor Center to learn more about CVI and the programs and services available for children who are blind or visually impaired.

Jack's Walker
Jack on the move!

As new parents we were just learning to manage Jack’s neurologic disorders. Our first meeting at Anchor Center with Dr. King and his team provided us with an assessment of Jack’s visual impairment.

Jack’s CVI diagnosis was confirmed and his functional vision on the CVI range was .75 on a scale of 1 to 10.

Working with Jessica Hank, an Anchor Center Teacher of Students with Visually Impaired (TSVI) and CVI specialist through the Perkins-Roman Endorsement, we learned about raising a child with a visual impairment and what we could do to improve his vision. Most exciting was we believe we saw Jack’s first time ever seeing anything. He looked at a red shiny piece of mylar paper, illuminated by Jessica’s flashlight. We documented this exciting moment on video.

The first visit to Anchor Center showed us we had a team of expert, caring professionals to support Jack’s journey and growth. We love Anchor Center and are excited to see what the future holds for Jack.

Jack’s Diagnosis
as shared by Robert King, MD, Board Certified Ophthalmologist

Overall, Jack is a child with a highly complicated group of problems leading to very complicated ramifications on his functional vision.

In addition to his neurological disorders, his other impacting diagnoses include some optic nerve hypoplasia, optic atrophy and ocular motor apraxia .

Jack is a prime example of a child who benefits from all of Anchor Center’s services. We know early intervention makes all the difference as neuroplasticity (the ability of neural networks in the brain to change through growth and reorganization) is more active earlier than later.

Jack with red buttons
Jack practicing visual reach

Our eye clinic will support monitoring and assessing his vision diagnoses while our TVIs will evaluate and classify his level of functional vision. Through all this understanding, we expect the interventions we design and implement to improve his functional vision. We have seen improvements already in the severity of Jack’s CVI since we began working with him 14 months ago and will continue to support Jack and his family throughout his journey.

Jack’s Program and Services
as shared by Jessica Hank, TSVI, Perkins-Roman CVI Range© Endorsed

When I first met Jack, his parents had reached out to Anchor Center from Spearfish, South Dakota, a 6-hour drive from our Center. While Jack and his family were in Denver attending other medical appointments at Children’s Hospital, we were able to meet with them and conduct a functional vision assessment.

Jacks parents expressed worry and fear as they werent sure if Jack could see anything. This was my opportunity to assess Jack’s functional vision and to show Kade and Elizabeth everything that Jack could do.

As we all sat on the floor in the light room, during this initial session Jack showed he had limited vision and the ability for his eyes to fixate, or focus. Jack’s parents hope for his future grew. He was in the right place with the programs and services to help him succeed. The family left their visit with a bag of books, CVI-appropriate toys such as a yellow slinky, red lipstick (a tactic for Jack to more easily see his mother’s lips), a flashlight, a lot of mylar paper, a Little Room with objects, and “Tips for working with a child who has a visual impairment” to share with family and friends.

Jack with iPad
Jack using technology

Despite the family’s remote location Jack’s parents and I participate in:

– Bi-weekly virtual tele-health sessions where I observe Jack doing activities at home with his mother, caregiver, nurse, or other therapists (sometimes Jack is eating breakfast, playing with toys, walking in his walker or exploring sensory activities such as making homemade dough)

– Observing Jack’s communication, use of vision and positioning through video

– Coaching tips to support the family at the end of our session

– Working with Jack’s other therapists to talk about Jack’s vision and collaborate about the best way to set up new activities

– Reviewing Jack’s medical progress in other therapies, and his progress within his family’s daily routines

– Spending time reviewing or recommending therapy products (the family borrows items from our Lending Library program to use at home for a specific goal or activity, or try out to see if they are good fit for them)

Jack's Progress Chart

Since implementing our vision strategies in late November 2019, Jack’s CVI rating has climbed from his initial rating of .75 and within a year increased to 3.5.

Jack has graduated to the toddler program as a virtual student of Anchor Center. He still has many of the same favorite activities and so much more. His vision is 20/200 which is considered “legally blind” but he has amazing usable vision.

Visual milestones that he has met include:

Jack with little room
Jack playing with visual targets.

– Beginning to look at one high contrast picture presented with backlighting on an iPad

– Shifting gaze between two toys or choices

– Making eye contact with familiar people

– Finding a toy such has his blue pom-pom or red Big Mac switch

– Reaching out to hit a toy with his hands, we call this a visually-directed reach

Jack hopes to attend the Anchor Center Summer camp program—Anchor’s Away.

Elizabeth, his mother, will attend the program as a student teacher to learn more about becoming a TVI, and to share her experiences as a parent of a visually impaired child utilizing the programs and services of Anchor Center.

Jack on zoom
Jack and Jessica engaging in an activity together over a virtual TeleHealth visit on Zoom.
CVI Range Definition
The CVI Range is the only educational tool to assess the degree of impact on the visual functioning of a child with CVI. The functional vision of a child with CVI is measured on a continuum and functional vision can be improved with systematic and tailored interventions. The CVI Range scoring system uses a scale of 0-10, with 0 recording no detectable functional vision and a score of 10 reflecting functional vision of that of a typical child of the same age.

About Anchor Center and Our Professionals

The sole focus of Anchor Center is early intervention and education services to foster the full potential of children who are visually impaired or blind.

In addition to eye exams, functional vision assessments, programs and services, Anchor Center is a leader in research of early invention of visually impaired or blind children. Currently, Anchor Center is collaborating with Rocky Mountain Hospital for Children and the Children’s Hospital Colorado to perform neonatal assessments to determine the risk of CVI, which is currently the leading cause of pediatric blindness. The results of the assessment, which is no touch and non-invasive, allows parents to address the risk through early intervention. A limited sampling of results include of the 70 babies screened, 52% have been identified as at risk for CVI.

Robert King, MD, Board Certified Ophthalmologist
Robert King, MD, Board Certified Ophthalmologist
Jessica Hank, Teacher of Students with Visual Impairments
Jessica Hank, Teacher of Students with Visual Impairments

 

 

 

 

 

 

 

 

 

Learn more about Anchor Center’s mission, programs and services, team, and how to support us. Anchor Center for Blind Children is a private non-profit organization funded by gifts from foundations and individuals.