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Alisha’s CVI Story

Alisha is a CVI Range-Endorsed Provider through the Perkins-Roman CVI Endorsement Program

Alisha and her husband Cullen live in a Northeastern Ohio suburb with their three children, born in 2006, 2008 and 2009.

IFSP and IEP Understanding
Alisha’s career and passion placed her a PT in a school-based setting where she worked with kids who had disabilities and participated on IEP teams that developed plans for children in Special Education.

She also has served infants and toddlers and participated on IFSP teams to develop service plans for infants, toddlers, and their families.

Alisha graduated Physical Therapy school in 1998 and completed an Orientation & Mobility program in 2015.

Her Story with Griffen

Griffen, their son with CVI, born in 2008.   He was born 4 months prematurely, at 24 weeks gestation, weighing 1 pound, 10 ounces. When we left the NICU, there was no mention by the doctors of CVI or any visual impairment to be concerned about besides Retinopathy of Prematurity.

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Noticing a Problem

Alisha noticed that something was abnormal with Griffen’s visual functioning based on her training despite his ROP screens being okay. After making an appointment with an opthalmologist, Dr. Traboulsi, at the Cleveland Clinic’s Cole Eye Institute, we learned that he had CVI.

child with cviAlisha started searching online and found Dr. Christine Roman’s book and then looked for anyone locally with specialized knowledge in CVI, with no success.

Alisha finally discovered that Dr. Roman saw patients at West Penn’s Hospital Pediatric VIEW program and we set up an appointment.

This appointment with Dr. Roman provided answers to many of the questions we had sought help with and opened the door to many, many more that came as we learned how to provided visual access to the world for Griffen.

The answers she found translated into a deep and driving passion to know and learn more. Griffen has benefited in countless ways, and progressed through the Phases of CVI to develop into the happy child he is today.

This passion and effort resulted in her earning the title of CVI Endorsed Provider through the Perkins-Roman CVI Endorsement Program.

Alisha is looking to share this passion that has meant so much to her family with you and  your care team to help streamline the path to progress for your child.

How is Griffen Now?

Griffen is currently in Phase III based on Dr. Roman’s CVI Range assessment. He started out in Phase I when he was an infant and first diagnosed with CVI. At that time, he had great difficulty achieving any visual fixation on targets and couldn’t perceive my face, was not reaching for toys, seemed to have a “flat” affect, did not respond with facial expression to my facial expressions or “baby talk”. In order to get him to smile, I had to squeeze his cheeks or tickle him. In order to get visual fixation on a target, I would dim the lights and use a light up target in a quiet space with him fully supported or lying on his back.

Once we learned that he had CVI, I worked very intentionally with him from a young age using CVI-specific strategies to get him to use his vision more during daily routines and activities, as well as therapeutic interventions geared toward fostering neural plasticity .

Now at the age of 10, he enjoys reading and is able to read fluently, has a knack for making up jokes, loves playing Nintendo 3DS, and watching You Tubers and their tutorials. He is currently educated in a home program by a certified teacher and receives related therapy and educational services at home and in the community. He also attends a weekly homeschool co-op and enjoys socializing with his co-op friends. He takes adapted music lessons and is making a CD out of the songs he can play. He also takes swimming lessons and enjoys testing how long he can stay underwater before coming up for air.

Some of his current challenges lie in learning and mastering common motor skills  that kids naturally engage in like catching and throwing a ball, socially interacting and looking toward people who are not so familiar to him, navigating less familiar places, maintaining emotional self- regulation  in busy or challenging situations or environments, and forming and recalling solid visual memories  of events/occurrences.

Despite the challenges he experiences, Griffen thrives in the right environments, using appropriate strategies to foster his continued development and growth. Often his challenges and visual processing  difficulties can go unnoticed by the untrained casual observer. With the right interventions, it is possible for a child with CVI to grow their visual processes to allow greater cognitive development to proceed.

This knowledge transfer is best managed in coaching DURING interventions and activities you do with your child, student, or client.  Fundamentals First offers both online video conferencing and phone conferencing.  We are confident that this will allow your child

  • to grow in their cognition,
  • improve their progress in all developmental areas,
  • and increase their opportunity to receive a fair and appropriate public education.

 

Ongoing CVI Teaching and Skillset

Alisha has presented on CVI to multiple groups of professionals, including presentations on the topic of Phase III CVI.

She has spent countless hours and an extreme amount of energy exploring multiple avenues, implementing multiple strategies and techniques, and attending numerous teachings and seminars on CVI and is still continuing to explore and learn from others every day.

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