Blind as a bat!

Well… yesterday started off like any normal day with school run mayhem. My youngest kiddiewink had an eye test in the morning, so I put her to sleep in a pram so she could get as much sleep as possible before the eye test. She slept all the way to our local opticians and then had big smiles when I got her out. I was so convinced that this was just a routine check and she would not have the same problem as her brother. We have no family history of extreme far sightedness and we were all quite convinced his vision difficulties were linked to a very traumatic birth. Kiddiewink three smiles easily and watches her siblings tv, and is interested in grabbing everything. How wrong we were… After a fascinating ten minute test, in which kiddiewink two was a superstar, helping the optometrist, Wendy told us that she thought she was the most far sighted baby she had ever seen. I don’t think there has been many occasions where I have been rendered speechless, but this was one of them, all I could do was laugh, not because I found it funny though, quite the opposite. Apparently even without the drops to dilate the pupils,she was about a +11! I know all babies are far sighted but a reading like this is far from normal and it is upsetting to think she cannot see us all clearly. The upshot is a referral to the hospital which will hopefully come through quickly. I am impatient with things like that, now I know she needs them, I just want to get cracking with the whole process, as I have a feeling the transition to glasses may not be as smooth as it was with kiddiewink 2, keeping glasses on a 7month old I am sure will be a challenge!

It really is amazing how even small babies can be tested. They check how well their eyes track and follow and then use flashy toys in the distance for them to look in, while holding different lenses in front of their eyes. Eventually this will be in more depth with dilation drops, but for now it was just to check if she needed a referral. Kiddiewink 2 held the flashy toys, and called his sisters name to keep her focused, such a star.

Kiddiewink 1 is gutted as she is desperate for glasses, and has been since before her brother got them. To appease her she is being given the responsibility for helping choose the girlie glasses.

I am sure we have a bumpy road again but we will tackle any challenges we face head on, and hopefully we will all come out happy and smiling at the other side. I am gutted obviously, and wish my perfect baby girl could see like all her friends but I guess it was not meant to be and I am sure she will cope likes superstar. And although I don’t really want glasses hiding her pretty face and sparkling blue eyes, I am sure she will look like a proper cutie!


He can see 3D and other exciting eye news…

A year or so ago, we were told kiddiewink 2 might never see the 3D images jump out clearly. Well… At his eye test this week, he managed to ‘pick up’ the flies wings, and spot the images that were jumping out! I am still smiling when I think about his little face when he was trying to touch the flies wings, so sweet. He performed the best he had ever performed and it was a super speedy eye test. Upshot is his vision is doing well but we will be keeping up the patching 2 hours a day, to ensure his vision doesn’t deteriorate. To be honest, I would rather keep it going for a few hours, than stop, and then have to start again. We have our own little routine with it all and it just works (at the moment). It will all be reviewed again at his next prescription check. While at the hospital I asked if we could organise time for kiddiewink 2 and I to take some photos for a photo story we are creating, they have agreed and offered us any help they can. I want to offer support to other young children experiencing hospital eye appointment, glasses, patches etc Today we picked up KW2s glasses, he was so excited and he thought he looked cool. While they were being tweaked, he was filling his pockets with the sweets they have in a bowl ( he really likes those sweets ), big perk of his visit for him. He also tried on lots of different pairs, making hilarious comments about how he looked. The optometrist is also keen to help me with our book, and we have a half hour appointment in a week to take photos around the shop, photos of one of my KW eye test and the equipment. I have several ideas about how to structure the book, and will be doing a few different ones I think, to see which works best. What I do with my book/leaflet, remains to be seen, but I figure it can be a lasting memory for him, if nothing else. All very exciting though.

Watch the moment he saw the wings…




August is Amblyopia awareness month so we thought we would join in the awareness campaign with a photo and a little video about patching.
Kiddiewink 2 is regularly asked (well via us), what he has done to his eye! Everyone on the school yard is interested and when not wearing it, it almost gets as many questions as when he is…


Kiddiewink 2 talking about patching to raise awareness

Why are glasses so expensive?

Kiddiewink2 has been in small frames but it was suggested on our last visit to Wendy Diddams that he may be needing a larger pair. Today, we popped in to order a bigger pair of tomato glasses. Unfortunately, now he has to pay for his glasses, gutted! I am on maternity leave and money is tight, so I asked about the free ones, but even the shop told me that they were so awful, we wouldn’t want to bother, they were right! To make matters worse he couldn’t even have the lovely fashionable square frames he loved because his prescription is so strong, the lenses would need thinning and even then they might not look right, with him being so young, changing prescriptions could be very costly if forking out for extreme thinning too. In this day and age, why can’t free children’s glasses be ‘cool’, why do you have to pay to avoid milk bottle glasses? He didn’t ask to wear glasses, already he is different to his friends, why do have to pay to make wearing glasses more acceptable? Fair enough if you don’t need them all the time, but for a child who cannot see at all without their glasses, why can’t there be more help? Even if a charity was set up to help subsidise glasses for little ones, very few would donate, when there are so many more important ┬ácharities, that save life’s! But as parents of a glasses wearer we will be always be having to pay for larger frames, thinning, prescription swimming goggles, prescription sports goggles, sunglasses… I accept that a lot of those are luxuries, but the glasses that provide ‘sight’ should be more heavily subsidised.

Photos of the different glasses to follow.

Hospital appointments

Well tomorrow we are off to the orthoptist at Warrington hospital, we always have to be there ten minutes early so he can play with the toys. If not, we end up having to have a play after his appointment which seems absolutely bonkers! I always feel really nervous before them, worrying whether KW2 will conform and do the test properly. He always tries relatively hard but sometimes it is difficult to tell if he can’t do it, or if he is messing about.

He used to hate the part where they test each eye using a patch and pictures, which get increasingly smaller. He used to try and hide his face, shout out silly answers that weren’t one of the options, or just not speak. Generally I got him participating by telling him to shout the answer to daddy at work. Things also improved when I twigged if he arrived in his patch then we got the weaker eye picture test out of the way and done with, this help immensely. At the last two appointments he has firmly said

“come closer, I can’t see it” when the test has got a bit difficult. The first 12 months he made immense progress, but as expected, this progress has plateaued over the last few appointments, which has been somewhat disheartening. He is not due the prescription appointment until February so at least the the experience should be relatively short and sweet.

Bless his heart, he said at bedtime tonight, that he likes going to the hospital but doesn’t like his patch so wants the doctors to tell him no more patch! (Don’t we all… Can’t see it happening though!)


The appointment went well, a mini silly spell but was a happy little thing and seemed to quite enjoy himself. Progress with the patch has plateaued, but this does mean that he can now reduce it 2 hours. He proudly told Daddy about his appointment when he got home from work. A massive achievement though was that he managed to see some of the 3D test, for the first time he could point out which part of the insect stuck out, even trying to grab it.

Patch boy

Patching when out of the daily routine is so much harder than when KW2 is at pre-school and other activities. Then the patch goes on straight after breakfast but in the holidays it just doesn’t happen as easily; well for us anyway… The heat doesn’t help as he gets so sweaty under his patch it is uncomfortable and when playing outside wearing the patch is less effective anyway. I can see lots of two hour iPad stints this holiday, just to get him to wear the patch.

We recently got back from a Eurocamp holiday and to KW2s excitement on day one we saw a boy(about 8years old) cycle past our tent wearing a patch. That was the best encouragement we could have had on holiday, as he ran in to choose one of his to wear in case ‘patch boy’ came last again. The boy was doing a loop with his chums so came past several times within the first ten mins, He clocked the patch on KW2 and beamed, staring at him. On his second loop he asked him if he had to wear one too, KW2 was made up that this older boy was talking to him. Every morning he then happily wore his patch for his stint, keeping an eye out for his friend patch boy. KW2 lovingly referred to this boy as ‘patch boy’ all holiday… When we met him in the bar, KW2 shouted “look there is my friend patch boy”, I did suggest he found out his real name then, which he did.

Only a three year old patch wearer could get away with calling another child ‘patch boy’!


Life with patching


Sometimes  it all gets a bit much…

How did patching come about?

During one of our hospital appointments, when KW2 was just 2,  they suggested we try patching the weaker eye 2-3 hours a day. This would help to improve the muscles in the weaker eye by making it work harder. Although his glasses correct the turn in his left eye, without them it still turns quite frequently. My biggest concern at this point was very much, how would the poor boy cope? Would patching be a time of day we dreaded? But I have to admit, I was also worried about other, more superficial things. How would he look? Would he still look cute? What would others say? Would he get laughed ? Picked on?

How does he cope with it?

On the whole he copes amazingly; no scrap that… He has been an absolute superstar. We had no idea he was so resilient and such a truely am628azing boy. My heart goes out to him every morning when the patch goes on.

The first 6 months of patching went brilliantly with little resistance, we explained to him what it was for and why he had to wear it, and let him choose the patch he wanted to wear. Although he cried a bit when it was put on, once on he just accepted it! How? I honestly have no idea, I wore one for an hour at work, as part of my Children in Need costume and had to take it off as it made me feel whoozy. I hated it!


At about 6 months in to patching (2.5 years old) we had a bit more resistance with him running away shouting ‘I am not having my patch’, he would hide, or bury is face into the bed/sofa/arm, anything to stop us getting to his face. He even took it off once or twice, he removed it and hid it behind the sofa. He then came to say “Mummy I have taken my patch off and put it behind the sofa” then a big grin. You have to admire his honesty, it really made me smile. I simply told him that was fine he could wear one a bit later instead. He put it on reasonably well later that day, which really helped stop me wavering.091 This trauma and upset was a new patching experience for us. It was then my heart reallly went out to all the children and families who go through this on a daily basis. It is absolutely heartbreaking when they are upset about having it on, because you completely understand why. We decided to take the hard line, although I know from the hospital that many families find it too upsetting and traumatic and  move to drops. We took him to the naughty step if he wouldn’t put it on, and once on, he got to play on my ipad. It brought me to tears once or twice, insisting he wore it when I knew the thought of it going on was upsetting him so much, but after a few days it worked and he began to accept it being put on in a much calmer manner. Others say that special patch time toys, electronic goods, reward charts towards a larger reward work well. He actually got a fish patch chart from the hospital and last week got given a wizard one, they are brilliant but we have found he doesn’t really need rewards anymore. Although we do still let him have the ipad if he is sad about putting it on…

Occasionally he asks is it time to take his patch off, usually we tell him. This is great because it means the occasional day missed is semi made up, because he wears it longer the next day. He just rips it off like a trooper when his time is up.  When my mum used to take him to tumbletots near a supermarket, he used to stick them on a lamppost on the walk through the passageway. Mum noticed a few weeks later when she spotted several…

So in conclusion..

Every now and again we have blips where he gets very sad at the thought of having it on, then it is trial and error to what works but we will not be beaten by a patch!


Things we tried

  • A cloth patch- when it seemed it could be the plaster element getting to him- he decided he preferred the ‘sticky’ ones.044
  • Family wearing it too, his sister often instigates this…
  • Sticking patch to our clothing first, this removes a bit of the stick, meaning it’s less uncomfortable to remove.
  • A snack of fruit (he is fruit obsessed)
  • A trip to the cafe… chocolate cake, ice cream. ( Believe me desperate times, call for desperate measures, these treats are easily reduced once they become more accepting309
  • Give him a choice. ” I know you don’t want it on, but you have to have it on to help your eye. You can choose where you sit to have it put on” or we give him the option of now or after Jake and the Neverland pirates… You get the idea. CHOICE is awesome, it gives them the power but the choices you give them often lead to your desired outcome.



How we coped with it?

Not as well as him! It is an emotional rollercoaster and when they are so understandably upset, it is heartbreaking. We have been lucky in that, KW2 is such a strong character he has let the patch essentially become part of him, a part of his life; a pretty pants part of his life, but a part nontheless.  His attitude towards patching has helped us immensly. A major challenge of patching has been finding a time when KW2 can do some close work.He usually has patch time at pre-school or with tv, mobigo, books, ipad at home; patching is most effective if doing close work. But invariably, sometimes patching had to happen when we were out and about, although we  got him to take it off at play barns  and playgrounds. If out and about we kept it on him longer as it wasn’t being effective. We ranged from 2 hours, to 4 hours, to 8 hours, back down to 2-3 hours.


How others cope with it?

Children stare and that is fine. What child wouldn’t? The poor lad is walking down the street with a whooping great big patterned plaster over his eye.  Some children ask what he has done to his eye, as do some adults. Lots of people assume he has hurt his eye. We then explain why he is wearing it. By we, it is often KW1 that confidently  explains the reasons he wears it (well when talking to other children anyway). His big sister  is brilliant and really helps if he is unhappy about putting it on, she will put one on at the same time, bless her little cottonsocks.


Experiences of others.

One family we know were finding it such a battle, everyday had become a day of dread. The boy now has drops, which stop him using that eye properly for a lot more than a few hours, but he prefers it, so it works for them. Not having the daily battle makes family life much happier, When talking to me about patches, he said he hated patches and wants drops.

What have I learnt?

  • how resilient KW2 is and how he adapted so much easier than me
  • Not to be put off in the face of adversity; each day is a learning curve and there will always be difficult times. But the more you can empower the child, the more resilient and in control they become.
  • we are lucky because not all authorities offer the decorated and colourful patches- these really aided our transition to patching

What has KW2  learnt?

  • Mummy doesn’t back down!
  • Patching can be ok because it helps his eye and he does like some of the designs

photo 4



What difficulties/successes did other children have?
What resources might have helped your child with patching?
A couple of clips of kiddiewink2 and his patch

Taking off the patch