Hands for Wiki

The Adventures of Vicky and Mimi

Ilya Cech, Motorika Company

Background

We already talked about Vika at the end of last year. The girl was born with pathology of the hands and visual impairment. The family thought about installing prostheses and even applied to Israel, but they could not make an individual prosthesis for Vika there, they managed to get cosmetic prosthetic hands at a local prosthetic company, but, like other children in a similar situation, the girl almost did not use them. Meanwhile, this year Vika will go to the first grade for visually impaired children, and it is important that she cope with the tasks at school on her own. "She needs fingers to carry a briefcase and play with toys, hold a leash to drive a dog," Marina Dyubakova, Vika's mother.

Vika is the youngest of 10 children in the family. Marina Dyubakova has worked in medicine for 29 years and has seen such a lot, such child tragedies, that in the end she became a mother with many children: in addition to her own children, the Dyubakov family has several foster homes with severe ailments. The first girl, Anya, was adopted in 1991, then Marina Dyubakova worked as a paramedic in an ambulance, went on a call – a woman was run over by a tractor, and she had a daughter, Marina Nikolaevna's heart could not stand it and she and her husband took the girl to themselves. The family is big and friendly, but it was not possible to pay for the prostheses on their own.

Fundraising

Prosthetic hands for aplasia can be installed free of charge, for this it is necessary that the rehabilitation program recommends "an active prosthetic hand, including with the separation and partial separation of the brush." But due to vision problems, doctors in Omsk considered that the girl would not be able to use functional prostheses, since there was no visual feedback.

Funds for prosthetics and road payments were collected with the help of charity. Back at the end of 2015 , during a crowdfunding campaign on Planeta.ru we got acquainted with the network of medical centers "MEDSI", then Natalia Vladimirskaya, the head of social projects "MEDSI", expressed a great desire to participate in the project and help. Natalia's colleagues, doctors joined, and a separate fundraising event was organized even at the MSU HSE. The students prepared buns, salads, sandwiches, fruit desserts, leaflets were pasted around the university with an appeal to participate in a social project. All the proceeds went to useful gifts for Vika and additional attachments for prosthetics.

In Moscow

Vika came to Moscow with her mother for 5 days. During this time, it was possible not only to install prostheses, but also to undergo a visual examination, conduct tests and get recommendations on cardiology (Vika's mother has heart problems). Well done again, "MEDSI", who organized the inspection.

Vika is the tenth client of Motorika and the second child for whom we make prosthetics for both hands. The difference between our company and existing prosthetic enterprises, both public and private, is in the quality of service that we provide. By contacting us about prosthetics, a person receives detailed information about the existing options for his particular case, even if we ourselves do not make the necessary prostheses for him. We provide full support at the stage of collecting and processing documents for receiving a prosthesis for free under compensation programs, we keep in touch with the regional offices of the FSS and Social Protection and try to direct people to informed specialists who are familiar with their situation.

An important element in children's prosthetics is the psychological preparation of both the child and the parents. It was the first time we conducted such an experiment in the process of making prostheses for Wiki. Let's see how it was and what came out of it.

Vika and "Monsiki"

A few days before arriving in Moscow, Vika received a video message from the fairy-tale character Mimi. A funny pink creature (we didn't know at that time that pink was Vicky's favorite color) reported: "Hello, you have a big day ahead of you. I'll meet you here." The meeting and manufacturing of the prosthesis took place on the basis of our laboratory in the Skolkovo Technopark.

Of course, the choice of the character was not an accident, explains psychologist Victoria Shimanskaya, a graduate of the psych faculty of LSU, author of the book "The Adventures of Monsters: an important book about how to communicate, make friends, understand yourself and this world." The book gave the name to the project "Monsiki". Victoria specializes in the research and development of EQ emotional intelligence for both adults and children. EQ plays a huge role in the socialization of children, including, it is a key resource for the psychological adaptation of disabled children. Before sending Vika an invitation to the Omsk region, her adult namesake studied the psychological portrait of the child, and selected Mimi from several monsieur dolls for her as a heroine. Fortunately Mimi is pink. Vika also asked to make pink prostheses for herself.

"The idea of the need for psychological support arose simultaneously with the creation of the company, but its practical implementation became possible only after the appearance of the Monsiki team in orbit. Which, in turn, happened in a sense by accident," - Ilya Cech, founder and director of the company. At the beginning of 2016, Andrey Davidyuk joined us. By education, he is a rocket engineer, graduated from the Military Space Academy. Mozhaisk; served in the armed forces, then went into a commercial structure, graduated from an MBA, was the CEO of large companies. Andrey is an ideologically interested investor. "Monsiki" is a project of his friends.

For six-year-old Vicky, the meeting with Mimi's pink "monsieur" became absolutely natural, in the sense in which children perceive fairy tales. For us, the holiday organized by Victoria and her colleagues was an important psychological experiment. The task of the experiment is to prepare the child for prosthetics with the help of animators and to train the use of the prosthesis in a game style. Vika was given prostheses that work at the expense of the wrist joint and provide a grip function. The first day was a fitting room: we made a receiving sleeve, adjusted it to the specifics of the injury and pre-assembled the prostheses, tested how they work, how the brush moves. The game helped to make it as natural as possible for the child. The girl took such an atmosphere very positively, made friends with Mimi. Together they tried to take objects, hold, let go.

While Vika was in Moscow, she even managed to become a TV star. The final fitting and testing of the prosthesis in several cameras was watched by the TV channel Russia-1. The very next day, Vika and her new prosthetics were shown on TV screens all over Russia. It turned out to be a very interesting story, after which people with similar problems began to connect with us.

It is necessary to train every day

The skill of managing a prosthesis needs training, as well as other skills – for example, writing. Currently, the prosthesis does not provide feedback yet, there is no way to feel the object you are taking. Rather, it is a manipulator, the handling of which needs to be trained and brought to automatism so that it can be easily handled and managed with small objects. To interest a child in a prosthesis, to make a toy out of it that you want to do is a very important task. Now, according to statistics, in 7 cases out of 10, even adult users refuse functional prostheses due to the fact that it is necessary to retrain and at first it is extremely inconvenient. Of course, there are other reasons for failure – an unsuitable sleeve for injury, a mismatch in the weight of the product, an unattractive appearance, a tight control mechanism, an inconvenient attachment – but we try to eliminate all these shortcomings in our prostheses, and judging by the fact that our prostheses are used, it succeeds.

From the point of view of grip, within an hour after the installation of the prosthesis and the start of training, the child can take large, light objects – for example, soft toys. From smaller items we teach to take a pen, pencil, small screwdriver, toothbrush. It is necessary to feel the physical dimensions of the prosthesis, to accept it as an extension of the arm. At first, children do not understand where the fingers end, they try to reach the object with a brush. After training, the realization comes how to position the prosthesis correctly to take an object, it's like controlling a mouse.

In addition, it is possible to install functional attachments – a rope mount with a snap mechanism so that the handle does not fly out (we did this for Anya from the Krasnodar Territory), a remote control from a quadcopter securely attached to the back of the brush (a gift to Fedya from St. Petersburg), an action camera mounted on a prosthesis that we all have filmed by Vika. We will prepare a set of attachments for the Wiki. Since the injury is bilateral, it will greatly simplify the performance of some tasks. There will be a nozzle for writing materials, for a jump rope, fastening for small objects and for a leash. Now we are deciding with Vika's mother what else will be needed, carefully observing Vika in everyday life.

"If we think of children as disabled, that's how they perceive themselves," says Victoria, the author of the Monsiki project. – Therefore, it is very important that the mother continues to include the child in interaction with the prosthesis through the game and through everyday life – as strange as it sounds, but this also needs to be taught to the mother. Until that moment, mom lived in a different situation, when she did something for her daughter, raised something, limited her in some ways. And it is necessary to psychologically cross the line when she cooks dinner and tells the girl: "Give me an apple." While there is no such phrase in her life, and she needs to introduce it absolutely organically."

There is a special technology of six steps (in the case of young children – three steps), with which the mother can explain to the child any exercise, any emotion, give any skill – fix the child in the state "I want it". Then comes a very important psychological transition: "I can." The child must also realize this, and this requires training, exercises. At this moment, mom's patience, acceptance of successes and failures are important. And the third skill is awareness: when a child does something on his own in everyday life and does it on his own. Parents go through these three stages together with their children.

Now in our country, the lives of children with disabilities are in the shadows. Disability is hushed up. This is a kind of cultural code of the country. 95% of the installed prostheses are cosmetic, it's just a silicone pad that creates the illusion of a hand. Such an overlay not only does not help the child, it interferes. In other words, it is not a prosthesis, but its imitation. The child begins to be shy, hide it, closes. We are not trying to mask the injury, and if I may say so, we are exposing the prosthesis for show. This is a bright, interesting device, a modern gadget with which you can perform various tasks. Victoria Shimanskaya: "What is determined by fate, technology does not allow us to change yet: we cannot give a child new hands. But we can give him new opportunities, we can equip him with an honest attitude towards himself – that is, not trying to hide a congenital defect, trauma."

Now Vika is already at home. At the beginning of this story, we did not even imagine that so many good things would happen. Two pink functional prostheses, an ophthalmologist's examination, which showed that doctors' concerns about impaired vision were exaggerated, an excellent scooter, Mimi's new girlfriend, a special electronic magnifier that was unavailable before, a set of books and games for children with visual impairment, a lot of soft toys and a horse from Natalia Vladimirskaya.

Within a year, Vika is waiting for the replacement of the prosthesis for growth. We will definitely tell you about the girl again. This is a cheerful, sociable child, dancing, drawing, telling interesting stories, now actively learning the alphabet and preparing for school. It is not yet clear how the girl will be met there, but we are very much waiting for the attitude towards people with disabilities to change. And we hope that our experiment to attract psychologists and game characters to prosthetics will be the beginning of a big story about changing the culture of prosthetics.

Portal "Eternal youth" http://vechnayamolodost.ru  21.04.2016