The freedom denied by COVID-19 transforms parents into courageous educators of "special" children with neurodevelopmental disorders.
On World Autism Awareness Day, we recognise and celebrate the rights of persons with autism.
Persons with autism have the right to self-determination, independence and autonomy, as well as the right to education and employment on an equal basis with others.
We are all undergoing through an unprecedented time in our history. The pandemic having a global impact on the health, on the businesses we rely upon, and the way we live our daily.
As we all continue to navigate through this unique and evolving emergency, we have to be together as a community and need to be generous, supporting the most vulnerable.
Whilst we stay safe at our home, for those privileged to have one, there are people facing more obstacles to have a cold meal and a place to sleep.
The storm will pass but kindness and solidarity will remain as part of our human being. It is during times like these that courage and resilience make a difference.
As underlined by the United Nation’s General Segretary, we must ensure that the breakdown of vital support systems and prolonged disruption as a result of the COVID-19 will not increase the social inequalities. Therefore, our global response must be inclusive to all people but in particular to those persons with autism and other form of disabilities; ensuring that our non-traditional ways of working, learning, and engaging with each other are equally accessible to them.
The testimony of Veronica Tuccillo, president of the organizations “Sempre più in alto” that operates in the Sanità district of Naples, with whom we collaborate for the Jucà pe Cagnà project.
“This year we celebrate World Autism Day closed in our homes with our “special” children.
The situation is certainly dramatic for those who rely on traditional rehabilitation centers, where the parent is never involved in the therapeutic process. In this moment of solitude, he consequently feels lost, abandoned and alone in facing problems, especially behavioral ones, which tend to get worse in the absence of the right interventions containing and stimulating.
More than ever, in this period I hear the cry for help from families who need training rather than assistance. The child/boy is and remains the son, pupil and disciple and to accompany him in his evolutionary growth there must be his first and main “educator”: the parent.
To become an “educator”, a parent must, with absolute priority and in the shortest possible time, be empowered, trained and initiated in the care of his/her child by going from “mere spectator” seen and treated with “resignation” to “active part of the growth path and the progress of one's son”.
The progress that the constant presence of a conscious parent allows is unimaginable. Only his “unconditional love”, accompanied by the support of the other educators (teachers, operators, teachers, assistants), in fact, offers an “imprisoned” child the opportunity to cross the cloud that surrounds him to return, albeit with struggle, to build its autonomies and to look to the future with hope.
Even in these weeks of generalized isolation, our method allows us to continue the work precisely because it is the parent who is at the center of the rehabilitation path and it is possible to support it from afar through messages, calls and videos of their children's exercises that we comment together. Our goal remains the same every day: to allow our children to “see the light of real hope for the future” (to quote Dora, Simone's mother) or, as Marina, Francesco's mother, and Manuela, Giovanni's mother, say “learn to see the colors of a world that offers trust, determination, enthusiasm and courage”.
In order to achieve these results, we never give in to the temptation of “piety” or pietism - as Francesca, Sofia's mother wrote to me - but rather try to teach our children the incomparable taste of “freedom”.
INSIGHTS
5 FACTS FOR AUTISM AWARENESS
a) The prevalence: In the United States about 1 in 59 children has been diagnosed with the autistic spectrum, in Italy 1 in every 77 children and appears to be increasing progressively. Males are more likely to be diagnosed with autism than girls;
b) An early diagnosis can be really helpful: Autism can be diagnosed as early as age 2. Early intervention affords the best opportunity to support wellness.
c) Autism spectrum carries associated conditions: Children with autism disorders are most likely to suffer from gastrointestinal disorders than other children, also more than half of children with autism have chronic sleep disorders.
d) An expensive disorder: It's estimated that the cost of caring for the services required (including the diet) for autism can be $196 billion per year on adults and $66 billion per year for children.
e) It's awesome to be different! People with autism spectrum disorders can help to make a change in the world! All they need to be successful is treatment and support from their environment. Just take people like Tim Burton, Charles Darwin, Bill Gates, and Albert Einstein as an example.
WHY WORLD AUTISM AWARENESS DAY IS IMPORTANT
There is no cure, but there are treatments! Nowadays, there are many ways to treat autism spectrum disorders, but they can only be reached when the person is diagnosed! By becoming aware we can help others to get in touch with specialists and start a treatment that can increase their wellness.
Don't try to change, start by understanding! People with autism spectrum disorders have specific characteristics, behaviors, tastes, and ways to do things! The key is to understand their way of seeing the world and their ways of doing things, to help them change and fit into our social context.
Always believe that something better can happen! It is a diagnosis that applies to the rest of life, however the interventions of educators and daily practices that encourage independence can allow to reach all the stages of development that allow an autonomous and free life.
OUR SOCIAL CAMPAIGN
Be an influencer of kindness by leading by example and spreading positivity to your followers.
Starting from this month we're asking you to embark on a Kindness Quest to help us make 2020 the year of kindness and help create a kinder, more inclusive world for autistic people and their families. Together we can create one million acts of kindness. Any acts of kindness, big or small, can make an impact in the lives of others.
Every Monday this month we will reveal the kindness quest of the week.
Advocate for this initiative by sharing information online.
Get involved with autism associations and take care of the people with autism spectrum diagnosis you know.
BIBLIOGRAPHY:
Veronica Tuccillo, a Neapolitan and originally a lawyer, is the mother of two children, the second of whom has autism. After the diagnosis, she devoted herself entirely to him and training on this issue. Building on her experience and her studies, she set up the non-profit organization “Sempre più in Alto”, of which she is the president. Certified as a "Center for the family" by the Municipality of Naples, which has thus recognized its social utility in its support, consultancy and training activities, the association operates in the Rione Sanità and has become a reference for those who do not give up and know that even children and young people affected by neurodevelopmental disorders can progress towards a full and free existence.
Last February, Veronica Tuccillo published the book DiversaMente. Neurodevelopmental disorders: a method for accompanying children and families. Dedicated in particular to parents, educators and social workers, it illustrates the stages of a method that can lead ... higher and higher. It is also available online (https://www.ibs.it/diversamente-disturbi-del-neurosviluppo-metodo-ebook-veronica-tuccillo/e/9788835389958).