From floor to ceiling, one jar on top of the other to form the highest tower: who as a child has never tried? It would seem a simple game where dexterity and imagination come together. Let’s try to change our point of view. Let’s take a child with a dystrophy or other neuromuscular pathology (there are about 200 and in Italy they affect about 40 thousand people) and here is that same simple game of stacking jars also becomes a treatment or an evaluation tool.
Who can benefit from it
According to a phrase attributed to the Chinese philosopher Lao-tzu the game is the greatest medicine. But also the main tool used for evaluation (complete with supporting scientific studies) and treatment in the neuro and psycho-motility of the developmental age. It can benefit children and adolescents with difficulties in the neuropsychomotor areas, therefore with psychomotor delays, autism, ADHD (attention deficit / hyperactivity disorder), dyspraxia (motor coordination disorder), intellectual disability, visual-perceptual disorders, rare syndromes such as that of Rett, infantile cerebral palsy, neuromuscular diseases. Most patients with neuromuscular disorders have a dmotor impairment but none intellectual. Therefore it is essential to put them in the condition of being able to play because the game in itself very important: the means by which the child knows the world from many different angles. Thus he learns not only ways of moving but also of relating, he learns to be in society, he stresses Enrica Rolle president of Uildm (Italian Union for the fight against muscular dystrophy) of Turin and therapist of developmental neuro and psychomotricity SS Neuromuscular diseases, Department of Neuroscience Rlm, University of Turin.
Natural need
These children need to play and us we recommend strategies for parents to enable them to do so. For example patients with spinal muscular atrophy (Sma) tend to have less strength so we usually suggest using very light games, rather than positioned in such a way as to allow their movement to put them into action or to play with other children. But the game is also the means we use to carry out the processing and evaluations, for enter into a relationship with the child, create thattherapeutic alliance essential for the performance of our work. also the reason why we don’t have rigid protocols in our therapies because we adapt at that moment to the needs of the child, which change from time to time, adds the therapist.
The first approach
How is the job set up? Usually the first time we meet a child, we observe his ability for spontaneous play and movement. For example, if we are talking about a child who at least moves “on all fours”, we have games in the room and see how the child moves in the environment, how he interacts with the games and we already identify some areas that may be a little more lacking compared to what we would expect for a child of that age. Through some setting changes O direct interactions with the child, we try to understand if at that moment he is able to perform certain movements with help or if instead a skill he has not yet developed. For example, I want to check if from crawling he can get on his knees. Trivially I take the game and put it higher and see if he can get on his knees to reach it and what strategy he uses to do it.
Special equipment
In carrying out the therapy, the specialists have one variety of tools: We can actually use a lot of games that are normally on the market. Not so much the game itself but how it is used that makes a difference. We use pillows, rugs, rubber bands , specific tools such as the Bobath ball or the Bobath table on which it is easier to perform the treatments. Then there is the whole world of orthoses and aids. But that’s not enough. You also need to be very imaginative, adapt quickly to the situation with what is available and on what are the interests of the children, different from each other.
The role of families
The collaboration of mothers and fathers basic for the continuity of care. We try to be very careful so that the parent remains such and you don’t become a therapist yourself because it’s not good for anyone. Families already live in a very complex situation in general, made up of worry and stress, however much they can anyway try to live it in the best way possible. In the treatment sessions we do a very precise, targeted and intensive work and it is right for the child to know that that work is done with us. We give parents advice on how to position the children, how to help and facilitate them but without giving directions as if it were a treatment. Let’s say they are general advice to use daily but for an indicative time, because we care that he works well when the time comes, but then it is right that he play freely with his parents.
Strategy da lockdown
The game was also the protagonist in this pandemic year. At first there was a moment of bewilderment. Our work considers the child as a whole and obviously the elective treatment is that in presence. But we had to adapt, both us and the families, and our professional Order also did a lot to give us support. Cos we found strategies which can offer us a lot, even beyond the pandemic. We started with the telephone interviews to understand what the situation was like. Then we have assessed the spaces available in the houses, to identify a dedicated one and ensure that it was not transformed into a single treatment “setting”. We invented games that the children could play independently or with siblings or family members. Or we have created files and sent them to parents with instructions on possible alternatives to continue a certain type of treatment, which obviously had to be modified because trivially the “setting” was not the same as when in the presence.
Digital sanit
In the era of electronic health, efforts are also being made to exploit the potential offered by innovative technologies. Now you are thinking about building applications that allow us to monitor the patient’s progress from a distance, in order to have a sort of diary of the activity carried out by the child, says Enrica Rolle.
Fundraising campaign
In times of Covid-19, talking about the right to play for children becomes even more important. For this reason, until December 31st, the Italian Union against muscular dystrophy is launching the campaign for FundraisingInclusion, child’s play. Uildm wants to support the project A school of inclusion: playing you learn that promotes the right to play of children with disabilities through a series of awareness-raising actions in schools and redevelopment in an inclusive perspective of parks and green areas in 16 Italian regions and the autonomous province of Bolzano, in collaboration with local administrations. The campaign will be hosted on Intesa Sanpaolo’s For Funding platform and aims to raise funds for carry out 28 redevelopment interventions (rides and games accessible to all) in as many playgrounds. The first intervention will be carried out in the park ofMonaldi hospital in Naples, where the NeMO Clinical Center, specialized for neuromuscular diseases, was opened in October 2020. The second expected in the Guerra gardens in Genoa and the third in Park of the Zero of Marcon, Venice. Everyone can contribute to making the parks accessible and guaranteeing the right to play for children with disabilities (link forfunding.intesasanpaolo.com/DonationPlatform-ISP/nav/progetto/giocando-si-impara).
April 17, 2021 (change April 17, 2021 | 21:31)
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