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The Impact of the Past 18 Months

We have known Spotty's Rider for several years and in this, their latest blog, they discuss the impact of studying during Covid 19 and subsequent reintegration back into school. So many things which are unconscious in those who do not have CVIs, are extremely challenging for someone with the condition. Many of these challenges may not affect people with an ocular (eye) vision impairment. Therefore care must be taken not to make assumptions that what may be a good strategy for a young person with an ocular vision impairment will benefit someone with CVIs. Spotty's Rider also has to deal with the challenges of Auditory Processing Disorder (APD) alongside CVIs. We believe this is not uncommon across the whole CVIs spectrum yet accessing diagnosis is not always easy. Thus appropriate measures are unable to be put in place to counteract its impact.
In Spotty's Rider's words much of the past 18 months was 'hell' and they strongly believe that support should reflect the challenges a young person with CVIs may face on a day to day basis and particular attention paid to their emotional wellbeing.

The Past 18 Months

It has been a very challenging 18 months for someone with CVI as I am sure many of you will appreciate. Lock down and online learning were horrendous, I am someone who likes routine and to be at home all the time, without the structure of a normal day was really hard. Although my mum tried to put a timetable in place to help me, it was not the same as a real school day and caused me to feel anxious all the time.

Online learning was also really hard, this was for several reasons- although my school was brilliant and set it all up on Microsoft Teams and my teachers tried their best in their delivery, it was just so difficult to access.

Major Challenges

  • I had to stare at a screen all day, when you have CVI this is really exhausting, and I got very tired. Trying to read the text and listen at the same time took so much effort. The teachers seemed to go so fast, the slides changing regularly much quicker than in a normal lesson. I also didn't feel comfortable constantly typing in the chat, asking them to slow down; so it was too fast and I missed a lot of the lesson content.

  • I realised how bad my hearing actually is, I have an auditory processing disorder. (APD) which is similar to my CVI but I never realised until lock down how much it affects my life and how I learn. Listening to lessons through a speaker was so different to real life and I missed a lot of what was said, again often it was too fast or got mumbled over the internet. I found it hard to read and listen at the same time. I realised that as I sit at the front of the class, I must pick a lot up visually rather than auditorily and I could not ask for the teacher's support as I usually do.
  • Concentrating so much made me exhausted. I also became very impatient with those around me, especially my sisters if they distracted me from my lesson or the task I was doing, as I was already finding it tough. I was more frustrated with them than normal and arguments often happened.
  • Although everyone tried to adapt work for me, it was all on screen and could not be done the same as it usually was, I like paper to work on, not typing on a document on my computer. Also, although my mum tried I could not have my TA to read for me as she would normally do.

All in all, it was hell, plus I had the pressure of GCSEs on top of this. In the end I had support from a clinical psychologist linked to my consultant at the hospital to help me deal with the anxiety and stress I was feeling. I think it is important for any child like me to get as much support as they can, and parents must push to get this.

Back to School

When we returned to school, it was a new challenge that I didn't expect would be ahead of me. I have spent years getting used to crowds, busy corridors and noise in lessons, but it was like I was starting afresh. My CVI and APD were worse than ever, and I had huge anxiety because of this. My hearing had actually deteriorated but this was through the lack of stimulation at home. When we spoke to my consultant, he explained that is was the lack of background noise at home that had affected me; I could actually still hear OK, but when background noise was present, as I was no longer used to it, my brain was having difficulty adapting and processing. I could not hear at all in the dining room and this led to my friends getting really cross with me as I was always asking them to repeat what they had said.

'Why don't you listen' was a regular occurrence, some felt I was just ignoring them and being rude- this was tough! I do not like to tell people about my condition and so many of my friends do not know as I feel they may then treat me differently and I do not want that.

So getting used to the whole auditory and visual cluttering that is in both school and everyday life was a huge challenge again and still is. I really feel like I have gone backwards but I am working hard to get back on track.

Positives

On a positive note, my mum has worked really hard with me throughout this year and so did my teachers once we were back at school. I have an EHCP plan that my mum fought very hard to get for me - which the school has supported completely. I also have a TA funded by the local authority to help me when I need it who also adapts work for me. I just want to emphasize when you have the right support in place then you can succeed - proof of this is my recent GCSE success- I got 1 x grade 9, 4 grade 8s and 2 grade 7s, which I am really proud of and this has given me the confidence that I can achieve. I will be starting A levels in September, yet another new challenge to face!

Finally, I am doing my best to get back to normal life, I think getting older is helping me deal better with my condition. I have had a summer job and although it has been tough it has developed my life skills and my confidence. Through this I have shared a bit more with my friends about my condition and they have been really supportive. I am going to take on the biggest challenge I have faced without my mum and go to the Leeds festival with my friends- I am very nervous about this but I am not going to let my CVI and APD hold me back!

Thank You Spotty's Rider

We are so grateful to Spotty's Rider for sharing their experiences with us and hope that they help others to understand the potential challenges which many young people with CVIs face, especially when they also have APD or suspected APD.

Spotty emphasizes the need for good support; not only practical support to enable them to access the curriculum, but also psychological support too. We were particularly interested to learn about Spotty's Rider's difficulties when integrating back into school, and their Consultant's comments in relation to their APD.

Well done Spotty's Rider on your amazing exam results and your courage in sharing your experiences with us. By sharing your experiences we hope that this will help other young people with CVIs, their families and all involved in their support, to understand potential difficulties and adopt a proactive rather than a reactive approach. We look forward to hearing about Leeds Festival and how your A level studies are going too!

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