It was the third time of asking that the optician managed to get a sense of my son’s prescription. The first time he’d hated having an eye patch on and barely responded to the questions. I had suggested he might not be able to see the shapes but the optician insisted he could (it being the starting size on the vision chart). I assumed she was right. Why wouldn’t I?
We were sent home to practice our shapes every night and return two weeks later. Admittedly we took more of an exam cramming approach and only looked at the shapes the night before the next appointment. My son has known his shapes since a young age so I figured that wasn’t the issue. He’s shy of strangers so I thought maybe that explained the “no comment” approach he was taking. Even with his revision behind him, we had no luck on the second test – non-cooperative he was termed.
The third attempt involved using eye drops. These relax the muscles and meant the optician could tell the prescription without him having to answer a thing. Turns out he has severe hyperopia (long sightedness). My mind was blown. The optician explained very little, she said it was significant and referred us to the eye hospital.
Securing our appointment in less than three months was a challenge but eventually I managed it. Approximately six weeks later, after prepping my son to answer the questions and bribing him with chocolate, I finally found out the full extent of his vision problems. His prescription was even stronger than initially thought and his level of acuity was severely reduced.
Watching him struggle to see letters which, to me, were huge was shocking and upsetting. I’d been holding out for an error, if not in the problem then at least in the magnitude of it. The only error was the under counting of it. My son had not been “non-cooperative” he had been unable to see the shapes in front of him. But he didn’t even know that, so he couldn’t explain.
Suddenly lots of things made sense. His insistence on being able to lick the screen when watching telly, and his squinting when trying to read were the obvious ones. These were, after all, the factors which had led me to the opticians in the first place.
But now other things made sense too. His preference for small groups, known people and staying home, despite his adventurous personality. The unusual discrepancy between his beautiful drawings and very messy colouring in. His behaviour attached to so many things. Far too many to mention, but the ultimate being his tendency to act out in busy, noisy places and his “hyperness” at the end of the day. His sensitivity to sensory overload now makes sense. He’s quite particular about the TV shows he watches – simple and repetitive wins the day. Crowds and dark places with loud noises have been a real struggle. Of course, if the world is a blur, then a dark, busy, noisy blur is three steps too far. There’s been occasions he’s “lost” me in plain sight and freaked out. He’s got good coping mechanisms, so he remembers which big tree I’m next to, but if I’ve moved an inch all hell breaks loose.
Whilst I can’t deny I’m not upset he’s experienced all this for almost five years, on top of some quite troubling emotional experiences. I’m so proud of him. I want to stick my fingers up to everyone who’s judged his behaviour over these years. “Hyper” behaviour is a way for children to let out their emotions and it turns out he’s been dealing with a lot just stepping out into the world as he sees it. If I needed another lesson in kindness and non-judging (I didn’t by the way), I just got a big one.
I was told the glasses would be with us in two weeks. It was an emotional rollercoaster of a wait. I joined some support groups which were great for feeling understood, but also scared the crap out of me. The more I learnt the more it felt that his vision problems were a disability and not just a “glasses thing”. His prescription equates to partially sighted and it seemed many children with lower prescriptions needed additional support in school. I felt like I was drowning. There was so much to learn and it seemed there would be much we may need to do to ensure my son would be able to flourish in school – both in the classroom and the playground. On top of everything else in life I wasn’t sure how I’d manage it. Actually, scrap that. I know I will do it. I will always fight for my boys for what they need but I didn’t want to. I didn’t want another thing to have to deal with when life was tough enough and exhausting enough already.
Slowly I began to accept it as I understood more the science behind the numbers. The final few days of waiting felt like forever. I wanted him to see the world with his new glasses. I couldn’t imagine how it would be. No doubt a little overwhelming, like turning on a hearing aid for the first time. But he would adjust and the world would truly be his oyster. A friend suggested the idea of a day exploring with the glasses on, looking up close at flowers and rediscovering the world. It sounded sublime. I booked it in my diary. If it happened to be a school day then he’d be skipping class.
….
Fast forward two weeks and it turns out vision issues plus glasses does not equal an immediate fix.
The day my son’s glasses arrived I opened the box with some trepidation. These were supposed to make our lives easier; yet it’s hard to get your head around “correcting” something you never knew was a problem. Taking them out and feeling the weight of the lenses in my hands just seemed to add to that in my heart.
Of course, now I know there’s an issue I want it dealt with. I was even (naively?) hopeful that these glasses might be the missing link to dealing with other challenges. But in all honesty they just made me feel sick in the pit of my stomach and I wished we could go back to the time when everything seemed fine with his vision. I still do.
My son was eager to put them on, I took this as a good sign. Like many had predicted, he was astounded by how everything looked. But, this was not a good thing. He was overwhelmed by the impact. In his eyes – quite literally – this was not an improvement, it was confusing. In his words, things became bigger, closer, dirtier (ok, so basically that just means he can tell mummy never cleans now) and surrounded by colour.
He was shocked by the faces he saw – me and the baby. Like he’d never seen us before. It was incredibly upsetting, especially as I’m still not sure if he “sees” us now. He questioned why we were both so red. Later he asked again, “why do you have red spots on your face?” It’s hard for me to understand what he’s seeing, but the way he describes it sounds like the pixels in a photo; the image has been zoomed too far and become pixelated.
Glasses – as I’m learning – don’t solve the problem of impaired vision. They give the brain a corrected image. It’s up to the brain to interpret these. Having gone for so long with such an incorrect image my son has learnt to deal with the world in a very unique way. His brain cannot immediately interpret these new images he’s being sent. Hopefully in time he will manage, but it’s not some quick fix.
The first day with glasses was unbelievably overwhelming for us both. The idea of going round looking at things anew was, I now know, ridiculous. He wasn’t about to see wonder in the flowers and insects around him when merely a switched-off telly was confusing (“mummy why’s it blue round the edge?” – it isn’t). His wonder came from the colour in the edge of the curtain; questioning over and over was the colour still there if he took his glasses off. It was mind blowing to him that something could be there, yet he couldn’t see it.
The questions threw me, “mummy why does my coat have bumps on it?” “Mummy why are there waterfalls everywhere?” “Mummy why is it a cliff?” It was something in the natural ups and downs of the ground which gave him this impression, the same went for our fake wood lino floor. Although perfectly smooth, to him it was like walking through an Indiana Jones film set. He fell over incessantly and the meltdowns were numerous and exhausting. Opening drawers became a health hazard as they appeared a meter further away than reality. That night we both climbed into bed utterly exhausted and confused, and in my case also decidedly sad.
My son has experienced some shit in his early years. Shit which is hard to understand – a dad with severe mental health issues who has been in and out of his life like a yoyo. A mummy who has been deeply sad on numerous occasions. On top of this, I now know, he’s had unbelievably bad eyesight. The world to him was a blur, lacking in colour apart from up close and – I’m finally realising – more 2D than 3D. I am gutted my child has experienced this and experienced it alone. And I’m full of guilt for not realising anything earlier. Only time will tell if the glasses correct his vision fully but in the meantime it’s another worry to add to the list.
Now the glasses are here I’m sad his gorgeous face is hidden behind them. This isn’t some vain, anti-glasses attitude. It’s hard to explain to those who haven’t experienced it (I’m sure I wouldn’t have understood previously). Friends and family who wear glasses look fab in them. Strangers in the street rock their chosen frames. So why would the frames upon his face matter?
Because they aren’t his face. They are something plastic and fake blocking my view of this beauty that I created. This gorgeous soul who I presumed to be perfect but has actually been struggling with a very real impairment for almost five years. The glasses remind me of this failure to be there when he needed me. They remind me that he will always be dependent on these to see (once he’s adjusted to them) and crucially, they hide his face – his flesh of my flesh; creating a barrier between me and my boy. Where once his face squished up against mine and our cheeks rubbed together, now that’s not possible. Looking across the table at him the glare of the light reflects off his lenses and camouflages his beautiful big eyes. One day this will become the norm for me, one day this will be how I am used to seeing him. But that’s not a day I look forward to.
My son no longer looks like him, and for now he doesn’t see like him either. Hopefully soon he will adjust to this new colourful, large and complex world but until then we are taking things slowly. I realise now quite how much of an adjustment this is. In the meantime I will face many more meltdowns, claims of being too ill for school, and an exhaustion that is like no other – in his words “my brain is empty now”.
Slowly though, we will fill his head with images clear and true and then, finally, he may see the wonder that is all around him.
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