"Autism is not a disease but a challenge"The experience of the mother - influencer who posts the daily life of her special child on social media - Ocarina Music Player
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THE POND

“Autism is not a disease but a challenge”
The experience of the mother – influencer who posts the daily life of her special child on social media

22/04/22 Insights Uncategorized

April is the month of autism awareness. The aim is to raise the attention on this disability, which is growing rapidly (1 child out of 50 suffers from this disease), fighting discrimination and isolation of which autistic people and their families are still victims. Ocarina has always been very sensitive to this issue, aware that listening to music or tales can be a very important tool for all those with autism spectrum disorders.
On The pOnd we decided to talk about the experience of a friend of ours, an influencer, mom of Gabriel, 4 and a half years old, affected by autism and Enea, two years old. Her name is Lina and through her camera, she tells on Instagram and on her community of moms, the daily life of her family, she talks about autism trying to raise awareness around this issue. “For many people autism is still a taboo, there is a huge underworld of parents, especially mothers, who are unable to get a diagnosis or who are often considered ‘crazy’ because, although they realize that there is something wrong with their children, they are not listened to by their pediatricians.”

Lina noticed that Gabriel was behaving differently from other children and despite the fact that everyone around her was trying to minimize the problem, she wanted to get to the bottom of it. That’s how she found out that her wonderful little boy was autistic. “As soon as we were given the diagnosis, my husband and I were shocked, we left the neuropsychiatrist’s room discouraged, but then we entered the elevator, right next to Gabriel was a child with leukemia. From there, we became aware that there was much worse, that our child was not sick and that autism was not a disease but a challenge that we had to live with day-to-day, but that does not take away life”.

So every day, Lina faces autism as a challenge. Certainly the biggest challenge she has set herself is to make her son Gabriel as independent as possible. Every goal he reaches, every improvement is therefore a success that she documents on her Instagram page with the hope of giving strength to other moms who are in the same situation.

“In fact, autistic children, as well as normal ones, have different characteristics, and unique needs, each one requires to be helped in a different way, not to mention that there are various degrees of autism; parents, on the other hand, are united by a strong sense of isolation, they are often left alone, with their own doubts, without any support services and they have to train themselves to do therapy to their kids replacing professionals.” 
Through Lina’s stories, many mothers feel less alone, they gain courage and have the opportunity to confront themselves: “Many write to me, they see Gabriel’s improvements, they ask me for advice so much that we have become a reference point for them.”

Gabriel, who has moderate autism, is working a lot on behavior and emotion management: “Special children feel everything amplified, sounds but also emotions, starting from anger and fear. Listening to audio stories helps my son relax. In the moments when he is most tired or under stress, he takes his Ocarina, bring  it to bed or to the sofa, cuddles it and chooses his favorite track: the story of the mathematician prodigy Maria Gaetana Agnesi….who knows why that one, but listening to it he relaxes and lets go of tensions…On the contrary, we try to limit all electronic devices such as tablets and mobile phones that make him nervous and isolated from the rest of the world”.

Just like audio-stories, music is also a very efficient tool to relax, but also to develop verbal language and create relationships with the external world. “From a very young age Gabriel listens to music, he has specific preferences and favorite songs, for example he loves and listens repeatedly to Hallelujah by Leonard Cohen, for this reason the professionals who follow us believe that music therapy can help him a lot. In addition to the Denver method (a gentle behavioral method), we will soon start a music therapy program.

Thanks to this continuous work at home, at school, with professionals and thanks to the love of family and friends, Gabriel is making great steps forward, but despite this, the difficulties and obstacles are many: “I don’t deny that there are moments of discouragement, when we feel abandoned by institutions, but also by people in general who often see us as aliens, who exclude us; I have now a strong armor but I feel very sorry for my child who is often dismissed by his peers, excluded, ignored. All this doesn’t make me angry anymore, but only sorry for those parents who don’t educate their children to respect the differences and the inclusion of all their mates, even if different”.