We don't know what we don't know
Parents might know our child best, but when it comes to identifying challenges and communicating them to others - like school - we often need the words to use. This is where Dr Nicola McDowell and The Austin McDowell Foundation have been invaluable to our family, educating and empowering us to communicate effectively and turn our daughter’s life around.
The Years Before We Had the Words
For years, we searched for answers. Our daughter would “go blind” stopping dead in doorways, struggled with stairs, and was covered in bruises from walking into things - yet optometrists told us her vision was fine, and an Irlens diagnosis and coloured glasses didn’t give us the full picture. She was so good at masking her difficulties that even teachers who had taught her all year had no idea she had a vision difference. We did our best to adapt and support her, but we were reactive, and we didn’t understand why.
The Breakthrough
The breakthrough we needed was by chance, it was 2023.
I contacted Dr Nicola (as she is affectionately now known in our house) for more information about CVI, and she emailed me back from a plane, straight away. She was in the process of finalising the Austin Assessment (a screening tool for CVI related education support needs) and when she returned home met us on Zoom and completed a screening process for CVI. She has had our backs ever since.
A Positive Series of Chapters
The rest is now a positive series of chapters in our history, thanks to Dr Nicola’s vision (please excuse the pun) of empowering others based on her own lived experience. She signposted us to BLENNZ and our daughter has a wonderful Resource Teacher of Vision and Orientation and Mobility instructor. She is now a proficient cane user and is working towards being independent, while feeling very envious about Norah, Dr Nicola’s Vision Loss Assistance Dog!
We have been avid followers of Dr Nicola’s Facebook page from the start and enjoy the fact that when our daughter reads it, her response is always the same:
“She’s just like me!”
Watching Together Over Breakfast
The isolation and lack of understanding we once felt has been swept away by the regular webinars from the Austin McDowell Foundation. The time in New Zealand coincides with our breakfast, so we watch together as a family, they’re on our calendar, and we look forward to every one. Each webinar has informed, inspired and empowered us. We can now advocate more easily for our daughter’s needs, and she is starting to self-advocate too, now that her anxiety has calmed and she knows she is not alone. At 15, she has the words and knowledge to understand herself and her experience of the world, and to communicate her needs to others - knowing that, although unique to her, it is shared by others who have gone on to live successful lives.
Finding Our Own Path
We have been able to choose an online school for her this year, having come to understand that this is the best option for our daughter at present. Her new SENCo is informed and shares that understanding readily - and it’s a continuous learning process for us all, supported by the webinars and our ongoing connection with Dr Nicola.
The Webinars That Stayed With Us
One of our daughter’s favourite webinars was “Understanding the Brain Behind the Vision” with Dr Corinna Bauer - she was absorbed by the neuroscience of it, and it helped her feel there was a reason behind her challenges. The most valuable for me was “Beyond Vision: Understanding the Wider Wellbeing of Individuals with CVI” with Professor John Ravenscroft, which gave me the words to communicate with others and helped me recognise the toll our daughter’s journey had taken on her. We have revisited these webinars often, and are very grateful to everyone involved, particularly Dr Nicola and the Austin McDowell Foundation, for this valuable resource.
