Low Vision — Eye-Pressing

Haydar Külekci
Leber’s Congenital Amaurosis (GUCY2D)
4 min readAug 21, 2023

As you know, every family suffers eye-pressing problems if you have a low-vision child. We have a little daughter. I could not say she is little anymore. She is six years old. For these six years, in each doctor’s examination, we asked them about a solution for eye pressing, and they said to us eye pressing is harmful to these children, but there is no real solution in literature, or we could not find it. And we try to find a way to prevent it. I could not say we were entirely successful, but I will try to explain what we did.

An illustration for eye pressing. Source

In the first two/three years, we tried to prevent it by interfering manually with my daughter. We pushed a little bit hard sometimes and ended up crying. But we continued steadily without giving up. So, in these first 3 years, we realized it was not working. Yes, we prevented it while with her, but somehow she continued doing eye pressing while at the kinder garden. Some shape changes happened under her eyes, even.

We had been trying to find information on the internet about what we faced. We read many different articles, but there was no exact solution. Also, there was no solution from doctors, even after years. I did some research to invent a band or bracelet. Those devices can warn her (voice or vibration, etc.) whenever she tries to poke her eyes. But, we thought this could be cruel, and it could be so noisy at some point. For example, it could make a noise while she tries to scratch his head. Anyway, I gave it up.

Most people say you must find something to interest her, and that exciting thing can prevent this behavior. Yes, we know, but finding different interests was hard. We tried to use the tasking method. In this method, whenever she tried to do eye pressing, we gave a task to her. Or, we gave her a task whenever she was waiting without doing anything. These tasks are something like getting water for myself (lol, yes, my wife was angry with me because of this task, but I like it), taking your baby from somewhere at home, etc. These tasks help her to individuality and also prevent eye pressing. At first, it worked very well. But again, outside the house, we need to find some bodies to define tasks. For example, teachers also need to give her tasks whenever she attempts to eye poking or before. So, again somebody needs to warn. This is similar to a warning.

Then, we start to look at another approach. One day, something happened, and she came home and told me she had a solution to eye pressing for herself. She starts talking about how she can prevent eye-pressing. I was shocked, and it was an exciting moment for me and my wife because after fighting to avoid it for more than 4–5 years. She (my daughter, who was 5 years old) came home and said that I found a solution. The solution was a toy which should be a tiny one. She said you could give me a little toy, and I can keep it near me and play with it whenever I feel uncomfortable. It helps me to prevent eye pressing too. She said that this was my duty. At first, we could not understand anything, and we thought that she tried to get a toy with her at school, which is not permitted. And we asked her teacher. We realized after talking with her teacher why she was talking like that. Her teacher had spoken with her at school, and they agreed to help each other. They prepare a verbal agreement. This agreement was like a duty for my daughter too. So, every day, before leaving home, she will take a toy with her in the morning and keep it with her until the evening. And whenever she feels uncomfortable, she can talk about it. So, with this magic, eye pressing is less now. We could not solve it totally yet, but for more than one year, eye pressing decreased so much.

As a result, you can find someone she truly respects and get her to make a deal with that person. And you can support that person to improve this habit to prevent it.

I don’t know if this could work for anybody, but you can give it a try.

Thanks for reading…

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Haydar Külekci
Leber’s Congenital Amaurosis (GUCY2D)

Elastic Certified Engineer - Open to new opportunities & seeking sponsorship for UK/Netherland relocation 🇳🇱🇬🇧 https://www.linkedin.com/in/hkulekci/