Kobe, structure and routines. It is inextricably linked. I don’t really remember it very well, but given Kobe’s diagnosis, we started visualizing all kinds of things pretty quickly, because we noticed that Kobe benefited from it. Not knowing what’s coming gives Kobe a lot of stress. In such a situation, spoken language is difficult, the message just does not get in. You can also see that in his body language and in his behavior that he has a very difficult time. Making it visual offers a guide, as it were.

Visual support with photos

When Kobe was much smaller, we started with an A5 folder, which contained a series of photos. Pictures of all kinds of objects that he needed throughout the day. For example: a picture of his plate, his cutlery, his cup, his bed, his stuffed animal, a cake, the chocolate pot, …. Things that were functional for him and could clearly indicate what was coming. The ‘photo book’ was gradually expanded with other objects and photos. Also from people from the immediate vicinity that he regularly saw, such as the therapists. In the evening in the sofa, Kobe could scroll through the photo book himself and name the people or objects he saw.

A5 folder with photos a big task

I really can’t think of how much time I put into it. Really a lot. Photographing, editing, making photos larger to get around his poor vision, printing… And to keep it all somewhat durable, the photos were laminated. The latter was especially important. No one dwells on that, but laminating sheets are usually very smooth and shiny. Depending on how the light shines on the sheet, you may mirror yourself in it, or you may see objects behind you. That gives a lot of incentives for Kobe and together with his poor eyesight, it makes you just miss the target. That is why – after a tip from the rehabilitation centre at the time – we opted for matte laminating sheets. They are slightly more expensive to buy, but that is more than worth it.

Visualize toys and play activities

In the meantime, we only use a few photos to indicate what is coming in the daily schedule. We still use them in the play corner. Kobe’s toys are in containers. That offers peace and predictability because you can see in the photo what is in the trays. Each box is actually a task for him. Because Kobe doesn’t know free play. Since we occasionally change the contents of the trays, it takes some discipline from myself to keep this up.

Icons of Sclera

Over time, we then systematically and little by little introduced sclera icons. Sclera is a non-profit organization that promotes communicative and intellectual accessibility through visual support. The icons of sclera are accessible to everyone, downloadable and reusable. The images are simple and black and white. It took me a while to figure out how to start. You can’t possibly offer everything at the same time, it’s a process that you have to build up with small steps. So we started by visualizing the evening routine: showering, wearing pajamas, eating sandwich, brushing teeth, cuddling, sleeping well. Over time, we have expanded the offer. Today we can indicate what the day brings and also broadly the day after.

Continue to innovate and offer visualization

Actually, we should introduce a new picto every now and then. I have to admit that something like this goes in waves. If things go well, you tend to use fewer pictos, but actually you should use such periods to expand the offer. Sometimes we play a game, where I go over the pictos and Kobe has to indicate what he sees. This way I can check if he (still) knows the picto. Through the use, repetition and pre-structuring, we hope little by little that this can help Kobe to perform tasks independently in the long term, although of course we realize that this will take a long time.

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