Rodrigo was born 11 years ago with a very rare genetic neuromuscular disease: arthrogryposis blocks him in a wheelchair because it causes joint contractures throughout his body. It does not move, it does not speak, it is artificially fed. He barely moves his eyes.
His mother Moira has always assisted him. With a hope: “That sooner or later he will be able to communicate his emotions”. Only a year and a half ago Moira has had a smile on her face.
Thanks to the TOG Foundation onlus (Together To Go) in Milan, Rodrigo was able to experiment with a new rehabilitation system with the use of video games. TOP! (Together to Play, as it is called) is a device that is part of the aids collection of UNICO – The Other Design, designed by the Together To Go Onlus and OpenDot Foundation, in collaboration with Dotdotdot and WeAreMuesli, with the scientific partners PhuSe Lab UniMi and the Mondino Foundation of Pavia, and was created thanks to the financial contribution of the Just Foundation.
“My son speaks with his eyes”
Before, Rodrigo had his gaze fixed: without stimuli he didn’t even think about moving it. “When the foundation offered me the video game console to try to encourage him, I said to myself: let’s try it – says Moira -. We had come into contact with the TOG center when Rodrigo was one and a half years old. For all these years we have worked using tools different, such as music therapy. They stimulated him in all ways, and only after a while did we realize he was conscious “.
“Since this new system that uses video games came into his everyday life a couple of years ago, Rodrigo started working with his eyes, moving them and concentrating more – continues his mother -. The platform goes often used, and it also takes a lot of patience. Initially it was important to make my son understand how to use it: with small games that emanated sounds, and he followed them with his eyes. Since then Rodrigo has made progress because he is able to give more precise answers. For example, if the images of a dog and a cat appear on the screen and he, directing his gaze towards one or the other, tells us which one he prefers “.
“Concentrates while having fun”
According to Moira there is another aspect to underline in this enterprise that has been developing for a year and a half: “It is also important for concentration, even if for Rodrigo it is tiring – she says -. this system is able to communicate, and even to watch cartoons. He trains at the center once a week, but he also uses it at school and at home: no more than 40 minutes at a time “.
“Certainly the games we are referring to are not the same for everyone – he concludes -. Everyone adopts a program compatible with their handicap. Rodrigo is a complicated case: we started from a light level and we are proceeding calmly. The goal is that he is able to communicate everything he thinks and feels. For now we feel his well-being from the signals he gives us, with a yes or a no. But we would like to have more precise answers, total communication “.
Here’s how the device works
TOP games! are divided into three groups: training games (in which to respond to cause / effect inputs through ocular interaction), cognitive games (which through the systematic exploration of space allow the resolution of tasks of different levels of complexity) and games playful, designed to involve the child in activities of pure entertainment and aimed at expressing his emotions.
Thus the child can be called to associate two images (between a glass that is first empty and then full, a bottle and another object, he must choose the right sequence by moving his gaze from one object to another); other times small paths appear on the screen to follow, such as having to carry an object from one side to the other referring to small footprints. Or the little patient can simply be called to have fun, to express their emotions through, for example, the traditional street games offered online.
Downloadable software
The software was created with the scientific contribution of the Center for Neuro-ophthalmology of the developmental age of the Mondino Foundation of Pavia. It can be used in the hospital but, being downloadable, parents can be instructed to use it at home. Provided, however, that they have an eye trekker.
The game program, especially for the definition of the characteristics of the gaze components, the evaluation of children and young people who use it and the data analysis on the ocular response, allows you to calibrate the eye tracker on the individual child in simple steps and allows the control and management of the single game session by modifying parameters such as time, fixation or speed.
Latest generation pointers
“The latest generation pointers – he explains Sabrina Signorini, head of the Center for Neuro-ophthalmology of the developmental age of the Mondino Foundation of Pavia, which treats an average of 900 patients per year – they can offer a further contribution to the current evaluation and rehabilitation methodologies in children with multiple disabilities, being the gaze one of the main means of interaction, communication and knowledge, from the earliest epochs of life. I am not talking about children with low vision or no vision, for which this instrument is not suitable, but of those for whom the visual center is not compromised “.
Data collection
The data collection phase, which occurs during play sessions, is essential for monitoring the child’s progress. All the sessions can be recorded and displayed, it is in fact possible to calculate statistics – for example of the time the child looks at the screen, or the percentage of fixations and saccadic movements – in reference to the individual child or in comparison with other patients.
“Children suffering from complex neurological diseases can have significant cognitive difficulties, often also associated with motor disabilities – concludes Signorini – For this reason, they often do not have the opportunity to speak, express themselves or transmit their emotions and their communicative potential. thanks to its interactive and communicative value, it can open a passage on their inner world and allow a dialogue with the reality that surrounds them “.
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