CVI is so nuanced and different for every family. In someways I feel I get lost in the quagmire of the complexity of the different CVIs. As a parent, what I need on a day to day basis are some practical strategies to follow to enable my child to learn and develop.
I want to better understand the individual CVIs that my child has. However, even the consultants and experts in their field can't tell me the detail due to limited knowledge, assessment techniques or my child's unwillingness to engage and so we muddle on. What we can do is use trial and error to try to remove the disabling barriers to learning. I'm sure I'm not the only parent who feels like this.
Fundamentally, I want to understand how we can best support their learning better. In this blog and a follow up one, I will look at the education journey that we have experienced and then hone down the learning techniques that have made a difference.
We're making some small progress in education, but it hasn't always been that way. So, I wanted to share with you our personal experience of trying to educate a child with CVI in a mainstream setting.
The teachers had no idea of the nature of our child's learning difficulties. The only thing they knew was that concentration on learning was impossible. There was no understanding of why this was happening and only minimal support available.
School started to do some teaching with a support worker in the corridor and found concentration improved a little out of the classroom,but it was a distracting environment and it was hard to refocus. Relationships with her peers were strained, the educational and social gap widened as we moved up through the school. General anxiety from the early years of school meant that we nearly reached a point of a complete learning refusal.
We were 'offered' and discussed diagnoses of ADHD, Dyspraxia, Dyslexia, global development delay or a spiky profile but none resonated with us. Finally, we were presented with Cerebral Visual Impairments which seemed to make sense. We were sent away with a sheet of strategies, some of which seemed to apply, others didn't.
This was followed by the battle to obtain an EHCP and eventually after a number of years of school, we agreed a needs profile, provision and resource package that we felt would support and enable her learning.
We were lucky enough to chance across the CVI conference and were able to attend. It was simply life changing. Finally, we started to understand a bit more about what was going on with our child from the dedicated and outstanding professionals who are trying to help these children who are so often falling through the cracks.
But even with that extra school support in place, with limited understanding of CVIs, it was hard for the professionals, teachers and TAs to know how to tailor their teaching. Crucially it was an understanding of how our child needed to be taught that made the real difference. What enabled her? What disabled her?
Professor Gordon Dutton, Patron of the CVI Society said to me at our first conference said, 'Don't expect the cavalry'. How right he was. No one was coming to rescue us, we just had to get on with it and work it out for ourselves.
The most frustrating thing for us as parents is that our child has no specialist support from a visual impairment professional. For years we have felt robbed, but I now realise that many QTVIs are not trained in CVIs, they are not experts in brain-related vision disorders but generally ocular visual problems, however this needs addressing if children with CVIs are to be supported to learn, stay safe and be happy. There is huge pressure on local authority resources and SEN provision generally doesn't meet needs across the country. Add to that the emerging field of CVIs and there are very limited routes to diagnosis, support and ongoing care. There is a massive disconnect between education providers knowing how to teach children with CVIs.
Upcoming research may hopefully change perceptions of CVIs and show the prevalence in the classroom but until now, this is not understood. And it will take years to become ingrained in our education system. In the meantime, CVI parents must empower themselves to find ways of helping their children to learn.
For our part we have had to take an active and time-consuming role in steering the way our child is taught. We now have termly multi-disciplinary meetings working closely with our school and the professionals such as Speech and language therapist and OT to make sure everyone is working from the same script.
Having had to home-school during the coronavirus pandemic has given us greater insight into how to teach a learner with CVIs and we noticed that our child made more progress learning at home than at school. I believe that many other parents of children with CVIs have found the same. But while increasing numbers of parents have taken the leap to become full-time home teachers, this is not the chosen or indeed possible route for every parent and in truth our children have a right to an education in settings which understand and meet their needs
In my next blog, I will look at some simple techniques our family has implemented over the years to help our child to learn. Some we have worked out for ourselves; others have come from her support staff and others came from the talented CVI Society Team and community. I am hopeful that this blog can help another parent of a child with CVIs.
While I don't expect the cavalry to come charging over the hills to the rescue, I now understand that patience and super slow, considered steps are the route to learning progress for children with CVIs.
The CVI Society is entirely run by people giving up their spare time to share information and support others.
If you can provide funds for the things we cannot get for free then you can help us to help others.