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A professional’s journey with CVI – By Natalia Kelly (Orthoptist)

Cerebral vision impairment (CVI) is a highly complex condition, unique to each individual. Many parents, guardians and families who have a loved one with CVI go through an unpredictable rollercoaster journey of trying to understand this condition and how they can help them to reach their potential.

Professionals working with people with CVI and their families also go through their own individual journey of understanding CVI and how best to provide support. Although the theory can be taught, there are various dimensions that a professional learns along the way that contributes to their skills and instinct when working in the realm of CVI.

An introduction to CVI

My journey as an Orthoptist working with those with CVI first began in 2003 and since then CVI has held primary position as a passion of mine. Over the years I have had the privilege of working with many children with CVI and their families.

There was one distinct experience that dramatically influenced my work with CVI and sparked the need to do better for these individuals.

The first time I was introduced to CVI is etched into my memory as a very vivid experience. I was a new graduate in my early 20s, working in Canberra. On my first outreach clinic, I meet an 18-month-old boy and his mother, who drove three hours for her son to have a functional vision assessment in a little community centre at Moruya, on the southeast cost of NSW. The little boy did not have a diagnosis of CVI; however CVI was assumed as he had significantly reduced visual ability in the presence of cerebral palsy, epileptic seizures and global developmental delay.

The functional vision assessment was conduced by a Senior Orthoptist, who travelled from Sydney to train me. I remember watching the Senior Orthoptist during the assessment and feeling overwhelmed. I was unsure what visual behaviours she was observing and why she was choosing certain toys and tests. My emotions were augmented by witnessing this beautiful little boy endure unrelenting, repeated dystonic attacks and infantile seizures during the course of the two hour assessment. I observed this amazingly strong mother calmly support her son through each episode and explain to us the different seizures he was experiencing. The reality of this little boy and his family had a significant impact on me. I was aware that this was the first of many CVI children I would see throughout my career and knew that my current level of knowledge was insufficient to provide the level of care required. I became determined to develop the knowledge and skills needed to assist these families desperately seeking support about a condition that was poorly understood by the medical and health community.

Broadening my understanding and practical approach

I began a steep learning curve, trying to understand CVI. I read widely and extensively. My literature searches evolved to become more reliant on evidence-based practices to ensure that I provided the utmost care to these children. As I provided vision support to more children with CVI, I quickly realised that I needed to develop a myriad of skills beyond the theory. Every assessment was unique and I had to approach it with a battery of tests and toys and apply my knowledge and skills accordingly to assess how their vision and visual processing capabilities reflected in their visual ability. Additionally, I had to learn how non-verbal CVI children communicate with others and their environment and I developed the ability to engage with these children and identify their requirements to elicit a vision response. I also became more proficient at recognising each child’s unique visual behaviours and most importantly, I learnt how to work collaboratively with my patients, their families and other professionals to provide holistic care.

Another milestone in my CVI journey came when I became a mother. I was able to gain a deeper understanding of the emotional and logistical challenges faced by parents/guardians of individuals with CVI. I also understood the level of unconditional love and determination these parents had to secure the best future for their child. To develop the most optimal intervention programs, I considered the individual’s learning and developmental needs and also how therapy can be incorporated into family life to reduce the additional strain of caring responsibilities. Parenthood also made me more aware of my prejudices when developing or modifying a program. I became conscious not to limit my patient’s abilities by having certain expectations, to ensure that individuals can achieve their optimum potential.

Parenthood made me more aware not to limit my patient's abilities to ensure that individuals can achieve their optimum potential.

Collaborating to provide a better future

My journey with CVI has been multidimensional and ever evolving. I continue to draw knowledge from the literature, reflect on my current practices, learn from collaborations with families and other disciplines and also consider the insight provided by those with CVI.

CVI is a transitioning landscape of new knowledge and insight made possible by research, technology and shared experiences. Although there is an increased awareness of this condition amongst professionals and the general community, there is so much more we have to learn to support individuals with CVI. As we travel on our own CVI journey, whether it is as someone with CVI, a parent or family member, a professional or researcher, we are united on the same path towards a better future for our CVI community.

We are united on the same path towards a better future for our CVI community.

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