On Getting Glasses

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Look at this sweet face! Someone got glasses. It’s been a long time in coming – a face to face ophthalmology meeting wasn’t ideal during covid. We talked about this already, in a previous post. About how everyone else was getting on with life as if it was all back to the regularly scheduled programming, as if covid wasn’t even a thing.

Well, part of that is ophthalmology requested a pair of new glasses for Mikaere. Aaaand then the spectacle dispensary ended up being closed on alternate days (because covid). After weeks of trying to get an appointment, we were told it was closing temporarily. (My silence at hearing this could easily have been translated into WTAF). Which meant that our alternatives were to take Mikaere out to Islington (a good hour in the car) or to go into a store (with all the people not wearing masks).

Awkwardly, we chose a specsavers that was close by. We had our voucher and I was hoping for easy and local and swift. We were all wearing masks (including Mikaere, who was also behind his rain cover) and honestly, I was super anxious about the whole deal. But, we lucked out. The first visit was a dream.

There was only one person in there, who helped us pick out and fit glasses. He was happy to chat and share when he last did a lateral flow test (that morning, it was negative). He was wearing a mask and we watched him sanitise his hands before coming over to us, stopping a socially distanced appropriate distance away. We tried on a few (which was hilarious and actually, a fun bright spot), ordered a pair and went on our merry way.

Picking up was less delightful. There were more people in the store, who weren’t wearing masks. One, particularly ableist lady made sure to tell me what the government guidance was on masks if your double vaccinated, after I asked her to move out of the way because she wasn’t wearing a mask, and I didn’t want to walk by her. 

My response was mostly a string of profanities. I’m not the most eloquent when I’m sleep deprived and scared for my kids health, but can I please repeat for you – just because you’re double vaccinated means you can STILL get Covid. You can STILL transmit it to others – like Mikaere. Who can’t be vaccinated. For whom Covid would be disastrous. Recognise that the UK government doesn’t care about vulnerable people and that whenever possible – PLEASE STILL WEAR A MASK! Please still socially distance!

I was shaking after. Honestly, some people are just awful. We were lucky though, because the optometrist was by contrast, an absolute delight. Yannick, he introduced himself to us, and to Kai specifically. He was double masked, volunteered his last test information, wore gloves and an apron. He even made a point to tell me he was sorry for that lady, that he understood, even before I explained how vulnerable Mikaere was. He went a long way to making me feel better about humanity – even after my display of less than articulate obscenities.

And afterwards, we were able to go home, with a new pair of glasses that fit.

I’m finding it really hard to manage in this new world, where every stranger feels unsafe, like they might be a risk to Mikaere. They might have Covid, and they might pass it on and just – he’s so vulnerable. So so vulnerable. Trying to balance to risk between something as simple as encountering people at a specsavers and Mikaere’s need for glasses is just – it feels impossible. The bigger view is that obviously I’m trying to keep my son safe in a world that is increasingly less safe for him. Relinquishing that idea of control – that I can keep him safe – feels unnacceptable (it’s my job as parent to keep my kid safe!) and I just… it just feels like another thing. Just one of those awful things that happens when you parent a disabled kid – the world is unsafe for them and you can’t protect them, and that heartbreaking impossible feeling is… its our everyday right now.

Hey ho. Onwards we go! Now with glasses!

More on Vision

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Now that we know Mikaere’s eyesight is worse than we originally thought (See the post titled ‘To my son I’m a giant blob‘) we can introduce things to help.

Now that it’s dark in the afternoons, I set up light shows for him. We were gifted this amazing black carpet/fibre optic amazing whatsit that has little lights on a black carpet that change colour (<3 Alexander x). We also have a set of fibre optic cables that came from a charity. Sometimes he’s interested, sometimes he’s not. We were told by his vision therapist that if he looks at a anything, that’s a win.

We’re also trying to introduce single bright toys against dark backgrounds in the hope that it helps. Portage bought around this great moving wooden duck that waddles very very slowly down a slope. I’d hoped he track it, and he kind of did the first time. We showed him a large light tube at vision, where the light moves down the tube, super slow. Again, tracked it, kind of, the first time.

Now he won’t. Is it because he can’t see it? Is it because he’s not interested? We wrangled a dark backdrop up to work as contrast to be be honest, I don’t know what’s working and what’s not.

I struggle with this, because I know vision, focusing and following is the basis of most physical developmental movement. So many movements start with looking, with motivation. And if he can’t see and he can’t hold and doesn’t have the motivation to see, which then moves into a lack of reaching or touching, what does that mean for him?

We’ve already seen that his little left roll is not a neurotypical roll, because he’s not starting it with his arms outstretched, as he reaches for something. He tucks his arms in, to keep them out of his way and leads with his knees instead. A bottom up rotation, instead of a top down.

So, working on vision. At least the lights are pretty.

To my son I’m a giant blob

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I found out something huge today. We met with our ophthalmologist. A lovely man. Who whistles and sings to Mikaere and works hard to illicit a smile. He’s lovely, and makes the effort to be sure I know what’s happening and am at ease. I wish all doctors were like him.

We know Mikaere’s vision is not 100%. We know he can’t see everything and relies heavily on his other senses to understand what’s going on around him. He explained Mikaere can’t see. He can’t SEE. He doesn’t occupy the same visual space as I do, because he can’t SEE like I do.

This, more than anything, has knocked me for six. My baby can’t see like I can. To clarify: he’s not blind. He can see some things. The example was it was like looking through a piece of Swiss cheese that keeps moving. Or listening to a foreign language where you know four or five words, you can grasp some meaning when you hear a word you know, but it’s gone so quickly and you’re back to incomprehension.

Another, more visual example was this. We see this:

A person with CVI might see this:

Our ophthalmologist officially registered Mikaere as sight impaired. Essentially, there is nothing wrong with his eyes, his brain isn’t processing the vision signals like we would. And that’s everything.

Just… of all the things we’ve been focusing on, vision was not high up the list and it should have been. I’m only just now realising what this means for him.

It means everything is moving too fast, everything is happening too fast for his brain to catch up. It’s why he looks away before he reaches for a toy. It’s why he startles so easy, because he uses his hearing to compensate and he can’t anticipate actions that make noise (in addition to his moro reflex being crazy).

I’m not sure how to help this, how to compensate, how to give him a way to navigate his world.

I just… my son can’t see like we can. He doesn’t exist in the same visual world that I do. I’m heartbroken for him. He lives in a completely isolated world, where not much makes sense. Honestly, NKH is rubbish. Absolute rubbish.