Still Advocating, Now Breathing: A VI Family’s School Update

Back in September 2026, we shared a blog post titled “Exhaustion, advocacy, and overwhelming love: Starting School as a VI family.” It was a deeply honest account of one parent’s experience as her son began school, capturing the fear, exhaustion, and emotional weight that so often accompany moments of big change.

Some time has passed since then, and I recently reached out to Becca to ask how her son’s educational journey has been unfolding. While the early days were far from easy, it’s heartening to say that things have begun to shift. There are signs of progress, growing confidence, and a sense that the path ahead may be a little clearer than it once seemed. Read on to learn more about how their story continues.

Another school term has begun, and I have found myself reflecting on the blog post I wrote back in September. 

At that point I found it extremely hard to find any positives and I hated that I couldn’t put a spin on how I was feeling or how difficult the summer had been.

The first few weeks of school were exactly as predicted. My husband and I were called to go in every single day to retrieve our screaming, petrified son from under a table and to try to stop him self-harming – a brand-new challenge that arrived for the first time in those early weeks.  There was very little we could do that the teachers couldn’t. I would sit rocking and cuddling him on the floor while he sobbed and screamed and shook. I cried myself, then worried that I was burdening him with my feelings and showing him that his feelings weren’t welcome, then cried some more with the guilt. 

My son has Oculocutaneous Albinism, so alongside vision impairment he also has additional needs including hourly suncream application between April and October. As I had expected, the first issue arose when an adult he barely knew had to apply suncream to him. It doesn’t help that in September his peers don’t need it applying. I sat at home looking at the clock knowing the first application would be at 11am and knowing full well what was about to come before my phone even rang. 

Honestly, it was horrendous. Worse than I had imagined. But it lasted just two weeks. On week three, the clouds parted and we started to see light at the end of the tunnel. 

The teachers quickly became safe people. They understood and engaged with his needs immediately. At times they seemed more on the ball than I was at managing the UV rating, sunglasses, and visually adaptations. 

The EHCP that had been granted in August was still stuck in the admin and understaffing loop of the council and to this day I still haven’t received a draft to approve never mind the final document. I was scared to share the professional’s reports with the school for fear of showing my son’s “worst side” before the staff got to meet the gorgeous, inquisitive, charming, empathetic boy he is. 

One day when crying in a side room whilst the caretaker talked about padding the walls to protect my son from his newfound head pounding, I apologised to a teacher who he had hit in a rage. I promised them how wonderful he is, and that when they got to know him, they would love him. His teacher stopped me immediately and begged me not to apologise. She said she already could see how amazing he was and sung his praises in specific, heartfelt ways.

Over the next few weeks everything settled down. My heart still broke whenever we had another bruise or bloody nose or when he talked about not being able to find anyone in the playground but now with the support around me, we could start to make adjustments. 

His QTVI and habilitation officer (provided by Guide Dogs as this is another area where the council is woefully understaffed) go into school weekly. 

Over Christmas, we realised how much happier my son was identifying his pals through their Christmas jumpers rather than school uniform so started to look at ways we could make this permanent with hi vis jackets or bands. 

I am having to choose what I advocate for and what I let go on a daily basis. It doesn’t help that getting the truth out of a 5-year-old in a coherent manner is near impossible, so it’s hard to know whether it’s true he’s not allowed on certain playground equipment because it’s too dangerous for someone with a VI or if that’s a yarn that my son is enjoying spinning. 

For a few days before this second term started, my son was up for 3 hour stretches through the night. I could see the anxiety building in him and started to panic we would be back at day one again, but so far, so good. Of course, I can, once again, see the difference between myself and the parents of neurotypical or abled children. The volume of emails I have sent in this first week alone, explaining my sons needs as sensory not behavioural, reassuring the new after school clubs that he will settle into things, chasing councils and SEN teams, begging for extra OT support, and it goes on.

I guess my biggest learn as a VI parent is that nothing is linear. Achieving something one day doesn’t mean it can be achieved the next as there are so many variables with glare, brightness, shadows, contrast and more. Add to this the social barriers that come with things like not being able to see facial expressions and it’s impossible to predict successful days from chaotic ones. 

But I feel more equipped than ever. I have absolutely no expectations in terms of literacy or numeracy and will just watch them develop at their own pace. But I now feel it is perfectly possible for my son to have a rich and enjoyable education journey and I’m excited to see what that looks like for him.