A week of blogs “Seeing Clearly”

I hadn’t been to see the opticians for a while. Every time I thought about going, it brought back so many happy memories of taking Nico to see the opticians that I couldn’t bring myself to go.

Nico really liked going to his opticians. They are a lovely, family run firm in Chipping Norton who had been looking after Nico’s eyes since he was 6. They all knew him well and they spoiled him rotten. As soon as we came in through the door they would rush round from behind the desk to say hello and to ask him “Can I give you a kiss hello?” Nico would smile that slow, flirty smile and look up at them from under his eyelashes, knowing they were putty in his hands and signal for “Yes”.

Even the man who actually tested his eyes was full of smiles and jolly for Nico, as if he was their favourite customer and with the help of this lovely man and his family, we had successfully got through many happy years of eye care.

By the time Nico was about 3 we began to notice that when he was very tired he had “eye wobble”. His eyes would sort of flicker from side to side. We asked our doctor about it and she said it was nystagmus and that it was caused by low muscle tone in his eyes. As Nico had low muscle tone everywhere else (athetoid cerebral palsy), it made complete sense to us that he’d have it in his eyes too, but the doctor thought that as he got older, and with good physio, his nystagmus would improve.

Nico had been at Penhurst School for almost a year when the school contacted us to say they wanted to take him to see the same lovely local family opticians who were to care for his eyes for the rest of his life. They wanted to talk to them about his nystagmus. After examining his eyes the optician thought that Nico would benefit from exercises to strengthen his eye muscles and probably from glasses when using a computer. So the school worked hard on creating more “eye pointing” exercises for Nico, which he would use in the classroom and with his communication devices. These both strengthened his eye muscles and helped him with his communication and he continued to wear his glasses for close work. His nystagmus got much better and within a couple of years had disappeared.

Nico continued to wear glasses for reading, computer work and any other “close work” and through the years we got through an increasingly funky and attractive selection of glasses which were always kept in the bag on the back of his chair, so that the carers and teachers working with him could quickly ask if he wanted to wear his glasses, and then put them on.

At least two years ago I knew I needed to get my glasses prescription updated. I’d had my reading glasses since 2005 and I felt they weren’t really cutting it any longer. But, dreading a return to the opticians without Nico, I just kept putting it off. At the start of the year I was finding started to find it harder to read at all and by May I was no longer able to read some blogs and websites at all. Books were getting harder, maps impossible and even daylight was starting to be tricky stuff. I mentioned how misty the weather had got to the MN and he agreed it was. But deep down I knew something wasn’t quite right and I had to have new glasses as soon as possible.

Last week I went to see the optometrist in our local town. I expected to be there about 30 minutes. I was there for over 2 hours and in that time my poor little eyes were subjected to such a battery of prodding, poking, drops, light shining and tests that I didn’t even know existed (they tickled my eyes – yes tickled!). After an hour and a half I already knew something wasn’t right and I just sat there thinking “I hope it’s not glaucoma, I hope it’s not cancer”. It wasn’t.

It was advanced, early onset cataracts.  I have a condition which they normally see in people over 80 and they’re amazed I have it, but I do.

They’re going to make some special glasses for me to wear for close work until I have my first operation but I won’t get those for a couple of weeks. In the meantime I have to wear dark glasses outside and limit my computer time.

An operation is essential to save my sight and they will operate on one eye at a time as it’s not without risk and they’ll start with my right eye, the eye I can hardly see out of, which the optometrist described as “decoration only”.  As I’m classed as urgent the operation will be within 6 months. Then a few months after they’ll do the other eye.  They’re going to insert special discs to hold back (hopefully) the return growth of more cataracts, but they say it’s possible.

Did I mention the eyepatch? Immediately after the operation I’ll have several weeks of wearing a particularly sexy eye patch. I’m already thinking of how I can “pimp my patch”. I’ll need to as I’m not allowed make up, swimming, showers, going on public transport unaccompanied……..the list is long and it’s all very tedious stuff. But at least I know that with luck, in a year the world is going to look like a whole different, brightly coloured and clear edged version of itself.

After Nico was forced to leave Penhurst for Barrantynes we noticed that his glasses would often not be in his bag when he came home. We asked the staff about it. Some said they didn’t know he wore glasses, they hadn’t read his notes. Some said they didn’t think he needed them. Some cared and remembered to put them on him, some even remembered to ask him first if he would like to wear them. But not many.

After a year we found them smudged, dirty and discarded on his bookshelf. We spoke to the manager about this, but he just shrugged. Were we sure Nico needed to wear them? It didn’t matter what we said, no-one seemed to put any kind of importance into Nico wearing his own glasses and it just became another on-going battle which we were never going to win because we couldn’t make anyone upset enough about the fact that Nico couldn’t see properly.

I have his glasses now. They are safe, clean and in his room. His doesn’t need them anymore, but I need them and I need him to know I have them, that they are safe and that they are important again.

Nico's Photos_0029

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8 thoughts on “A week of blogs “Seeing Clearly”

  1. This post is the latest in “A week of Blogs”. This is a week in which I will blog at least twice a day this week in the countdown to the anniversary of Nico’s death on 22 August. Please join me in my week of blogs – by reading them and by commenting too so that your words become part of Nico’s “A week of blogs”.

  2. My husband comes from Chippy and i know Penhurst well, my son nearly went there in the 70`s as we (i) hail from Banbury – small world eh. ?!

    • Nooooooooooooooo! Astounding! Nico went to Penhurst school from 6 to 17 when he changed over to their young adult unit (like a college where you learn skills for life). He was there till almost 22 but sadly I was powerless to prevent social services forcing him to somewhere cheaper

  3. Nooooooooooooooo! Astounding! Nico went to Penhurst school from 6 to 17 when he changed over to their young adult unit (like a college where you learn skills for life). He was there till almost 22 but sadly I was powerless to prevent social services forcing him to somewhere cheaper.

  4. This post so resonated with me. My youngest works in an Opticians and absolutely loves every bit of his job. Yesterday he was pleased because he’d persuaded my dad to go to where he works for a check up. We were sitting around my dining table chatting about how the appointment had been when I saw and read your post – about opticians! Then my other half chipped in that earlier in the day, completely unexpectedly, he had bumped into Toby’s optician for the past 8 years – a man with infinite patience who allows Toby to try on every single pair of glasses on display – pulling off the price tag off every single pair before he puts them on and in so doing, creating hours of extra work for this wonderfully understanding optician. Your story of how much Nico loved the opticians really came alive for me, as did the appalling lack of care you recounted whereby his care workers denied him his glasses through apathy and thoughtlessness. As you know, Toby has recently moved care homes. In his last place he was frequently without his glasses, and often the staff didn’t even know where they were. Even after he left there we were given a pair of glasses, supposedly Toby’s “spare pair” that we had never seen before and from an optician Toby has never visited. When we returned them, they had no clue which resident they really belong to, so there is a very vulnerable learning disabled adult who is without his glasses and unable to see properly. It makes you wonder what else these people get wrong – do they have the same couldn’t-care-less slapdash attitude towards medication too? I’m so sorry to read about your eye problems, you really don’t need the stress of operations on the horizon. Sending love and best wishes. Yvonne xx

    • Yvonne – I couldn’t put this better myself. The idea that our beloved and very special young people are so unimportant that they don’t need to be able use their own glasses just says it all really about the wrong care and the wrong kind of management in homes. As for me – I’ll just suck it up as to be honest, the worst has already happened to us and everything else is just a bit of bad news to be got through.

      • Bless you Rosi, it’s still a big deal with your operations, but I know how the even bigger stuff gives you a different perspective. Also, there are some excellent care homes out there – we found several in our search to get Toby moved, and his new home is so wonderful I can well up just thinking about him there.

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