It always starts the same way, right? You wake up one morning and realize you suspect your child has a vision problem. What now?
The short answer is – don’t wait, go to your GP, get a reference letter to the eye hospital and start the long process of waiting, testing and praying.
Unfortunately, the short answer doesn’t really cover it all. It does not tell you about the sleepless nights, the long hours of eye-patching a crying baby, the mean doctors and unfriendly people you will meet along the way, the worries, and the hopelessness of it all.
It also doesn’t tell you about the great doctors and helpful professionals you meet along the way, about the joy of giving your child his first pair of glasses and watching him start to discover a whole new world, about the relief you feel when there is the slightest improvement, about the fact that your baby will grow to be a happy, smiley boy.
Over the years we’ve been through quite a lot form the moment we first started suspecting Yon has a vision problem, and until we got the full diagnosis, Yon has Ocular Albinism, which is a rare genetic disorder that is basically a static incurable condition that affects his vision’s sharpness and depth-perceptions, and is on-top of his squint and need for glasses.
This page is a work in progress that explains everything we discovered along the way.
If you want to read our story just click here – Our Story.
It is, if you want – my long answer.
I really want to emphasize here that this is based on what WE went through, what WE learnt along the way. I am NOT a medical professional, and none of the things written here should be taken as a medical advice. It is OUR story, and OUR conclusions. Which I hope can help others.
There is a range of vision problems that could affect your child, and everyone of them needs a different treatment but the basics are the same (as far as I know) –
1. You need a reference letter from the GP in order to get to the eye-hospital. It takes about three month for the first appointment to come through, so you want to start the waiting game as quickly as you can. Most problems will not be affected from a three months wait, but as I have been there I know the first wait is the hardest. You can do what we did and go to a private doctor in the meantime. That is definitely an option. BUT, private medical insurance, even the most expensive and comprehensive ones will not cover eye treatments. They might cover the first consult but no more than that. Vision problem require regular visits and tests, and all that is better done through the NHS.
2. Each time you go to an eye-doctor, your child will go through the pre-drops tests: the “tell me what you can see” test, the lenses and flashlights; then most times you have the drops, wait half an hour for them to work and have the eye-test with the lenses again; lastly you have the doctor and the back of the eye test. After that you get the results, and a prescription for glasses.
3. They check for glasses (the drop tests) every 6 months or 12 months. BUT if you feel that the prescription is wrong you can ask them to check it before that. They might not like it, but they will.
4. If you are talking about a baby or a toddler, then you really must remember this – all the results they get, all the conclusions they give you, the prescription that is written down, they all come down to this – they are not accurate. Everything is dependent on your child’s cooperation. And when we are talking about a baby in the pre-talking state, well, he can’t really say what he sees right? and even after that, when a child is in a bad mood, or he doesn’t like the tester, or he is tired, or he is sick, or he rather play outside, or a million other reasons, he won’t cooperate and you will get the wrong results. Yon’s vision results ranged between fine to 50% to 75% and are now at 60%. It gets better with time, and you learn the tricks that helps your child concentrate or cooperate.
What we learned over the years-
1. Never go to the doctor alone. Mainly because I can only think of about 3 doctor visits in the last 4 years that went as planned, i.e no bad news, and nobody likes to hear bad news alone; because it’s annoying to have to relay everything afterwards to the other parent and have them say “oh, why didn’t you ask…”; because English is not our mother-tongue after all so sometimes it takes us a minute longer to process; because even in your mother-tongue, each of you hears different things and understands different things so it’s good to compare; because everyone thinks of different questions.
2. Find out what works for your child – bribes, promises, food, special toy, yelling, animal pictures on the screen (just so you know, we tried them all over the years…). Whatever works use it, because so much is dependent on your child’s cooperation.
3. Learn as much as you can. I know most doctors are against Internet medicine and I totally get it, but the problem is, most doctors are very stingy with answers, they treat you like a simpleminded idiot who can’t understand anything (like the professor who told us we did not get an official letter with the test results because we wouldn’t be able to understand them anyway), and even if they do give you great answers, they don’t live with you and won’t be able to answer the after-questions, you know, the ones that pops in to your mind three hours after you left the clinic. So I say, use the internet, learn as much as you can, and then make a list of questions to take to the doctors.
4. Watch your child. For a very long time we felt ashamed about watching Yon and trying to decide what he can and can’t see properly. Do you think he can see that? Do you think his squint is better? etc. We did it, but at the same time felt bad about it. Don’t. It’s super important, firstly because you are his voice. You have to be able to tell the doctors, no he does see that at home, or no I don’t think this prescription is correct, or I think he doesn’t see that. Second because you need to be able to see if there is a difference – for better or worse, third because you need to understand what he sees and how he copes with it, and fourth because you can’t help it, so don’t feel bad about it.
5. Remember it at all times. It might sounds weird, and is definitely not what we did, but the truth is if you never had a problem with your vision, like me, you might find it really hard to understand, again – like me. It means you don’t remember it when you go to the movies and need to pick a seat, or when you are in a hurry and needs him to go down the stairs already, or when he stands inches from the TV, or when he touches everything while shouting “just looking mummy”. You need to bring it to your front of mind so you won’t get annoyed, or upset with him, or constantly surprised.
6. Talk about it. I don’t mean go around and tell strangers your child’s problems. Also usually other parents in the playground don’t really want to hear it. But you need someone to talk to, because bottling it up is not advisable, and it can’t always be your forever optimistic husband who doesn’t understand completely how much worse mothers feel. Also, other people could have good ideas you haven’t thought of, and in the end of the day, saying it a bunch of times helps it sink in.
7. Tell the school. I can’t stress it enough, and there a few reasons for that – you really don’t want them to think your child has a different set of behavioral problems because they are not well informed about his vision problem and how it reflects on his everyday life; because you need their help, and most of it will be voluntary; and because they know the system better than you, they have experience with it and they can help with finding outreach programs, advisors, etc.
8. Research the local authority. Your local authority might have a special school, or a special program, or an outreach program for children with sensory difficulties.
9. Meet professionals that are NOT doctors. Because first of all it’s always nice talking to people who know what you are talking about, they give you a different perspective and help you understand the day to day difficulties your child faces and what you can do to help him, like introducing him to a magnifier glass, a special keyboard and mouse, an iPad (and some apps), etc.
10. Don’t be ashamed. There is nothing easy or fun about saying “my son has special needs” or “my son has a problem” or “my son is not perfect”. But also there is nothing to be ashamed of. It doesn’t mean he is less, just that his needs are different than others, but saying it out loud is always difficult.
11. Don’t rush into anything irreversible. Surgery is a big decision. I am most definitely NOT saying don’t operate in any case, but I am saying BE SURE. Be sure it is absolutely necessary. We went with the less-invasive treatment and the recommendation to wait until Yon is at least three years old before deciding about an operation, a decision we never regretted because a) the glasses fix most of the squint, b) the tests were always inaccurate and so you can’t be sure how much “fixing” you need, c) because it wouldn’t have helped and you are not supposed to operate on kids with albinism, a diagnosis we just got. But, saying that we did have a friend who’s child has a different eye problem and they needed to operate when he was a year old. So, just be sure (and check with at least a couple of specialists).
12. Family Support. Your hospital has it, so ask your doctor to see them. We didn’t know about that and our doctor finally told us about them after she got tired of our questions. Family support can help you figure out what help you are entitled to, how to deal with the diagnosis, and basically give you someone who is not a doctor but who have seen cases like yours, to talk to. It is very important.
13. Positive reinforcement, became very much important for us now as Yon grows older. he starts noticing he is the only one wearing glasses in the house, so we show him grandparents wearing theirs, and we tell him how beautiful he is wearing his glasses. Also now he has to wear a hat all the times, so we got him a new one with a Gruffalo and compliment him on it all the time. Every time he cooperate on his eye tests he gets clapping and praises.
14. Explain what you can, before going to the hospital we go through the whole process of what is going to happen and sell it as an adventure. Now we need to start thinking about explaining the whole albinism thing, which I am not really sure how to, so I have no recommendations.
15. Eye-check days are horrible. We never expect to get anything done on eye-check day, not before when the ball of stress starts forming in your belly, and not after when you are exhausted, sad and have a bunch of new bad news to digest. In almost four years, it has been like that every time. We take 24 hours to get back to normal, and always get take-away and chocolate on those days.
16. Crying helps. Laughing also helps. We are big believers in dark humor and cynicism, so we use them whenever we can, because we are also big believers in you laugh or you die methodology. So we laugh. When we can. If you want to get a bit of how we felt when we got our diagnosis you can check out this post, or this one, or this one, but I have to warn you they are both pretty dark. If you want to see some dark humor, than check out this one.