Introducing myself
Cometto My name is Marina, mother are 37 years of a creature with disabilities, in all these years I have learned, enjoyed, suffered, held, loved, "swallowed bitter pills" in consideration that this was part of a "different life" as society placed then and still today, unfortunately, often, families who face this reality, often without anyone advised , help, to lay in your choices and everyday obstacles, in the opportunities.
I also learned, especially since the "net" started to be part of my life, would certainly enhance the commitments that were already superior to ordinary lives, by comparison, inform more, speak with the online media, with journalists from the social, institutions, people living with disability and I think I made a cultural background in the field.
If I went to university, if I become a doctor, teacher, psychologist, nurse, assistant I certainly had more social attention from the company, because even before the titles offer real responsibility, respect, visibility and opportunity.
But is life, life truly lived the first person who can learn, understand, evaluate, think, create, every day that way, that commitment that I can do grow in accordance with the wishes and hopes that the persons involved in these lives by "Martian" people, explain, express, many times, too many in fact, without finding the attention they deserve.
Why this blog: Preamble
When I started living my daughter's disability was a young and inexperienced mother 23 years, I had a child, we had a modest but happy life, a husband, a roof over our children to live together and many good prospects for the future.
did not know the disability if not heard and certainly never imagined I would become part of this group of people who all looked (Which ignorance) with unease, suspicion and pity.
Then destiny, fate, divine will, as everyone thinks he believes, has catapulted us into this wilderness, social, you're never ready to become good parents, not There is no school for this, and become a creature with disabilities are still not ready, pain, dismay, disbelief touch our deepest feelings and not be overwhelmed by dark thoughts is not easy or obvious.
Many families are known in recent years, 37, have had to resort to elaborate and psychological help to overcome the "mourning" that the birth of a child with disabilities has, for some it was easier for others less, for others the peace has never prevailed over despair.
I personally know hundreds of families, many others only in virtual form, but the comparison was possible, we exchanged information, advice, help and found that several between the various negativity present in our lives as "disabled families".
There is one that we consider very important, indeed fundamental motor rehabilitation, speech therapy, cognitive.
In Italy in fact almost no rehabilitation, especially for children and adolescents, too many people think and believe that when disability is complex because of genetic diseases, metabolic , trauma etc etc, it is not appropriate to prepare a rehabilitation plan effective, because "they are not used", our children, especially the most serious weights are considered expensive and unproductive, so why commit money, time and professionalism per recuperare quel poco che per molti di loro significa solo riuscire a tenere in mano un bicchiere per bere, oppure riuscire a fare qualche passo sul deambulatore, per altri ancora riuscire a emettere un suono per significare che desidera qualcosa, poche cose insignificanti per la maggior parte delle persone, ma importantissimi per noi genitori e per i nostri figli, ogni loro piccolo progresso che li possa aiutare a sentirsi partecipi della società per noi è pietra miliare, per l’economia, la sanità e la politica sono soldi sprecati e per questo i nostri figli vengono penalizzati ulteriormente nella loro qualità di vita.
From what I have created the association to help families with disabled children grave bearing the name of my daughter and started to learn more about the reality of the lives of so many other families, diseases that were unknown to me until then, I met children tracheostomized, artificially fed, helped to communicate with buttons, computer programs, or even through a smile or blink of an eye, I often hear parents say that despite the requirement of qualified centers that prove the need for home care and outpatient physiotherapy, speech therapy They feel the requirements decline because ASL does not have the staff available or professionally prepared, families do not know how to behave, many will rebel and turn to the law, others pay privately rehabilitation subtracting the family a lot of financial resources, other than to resign and sorrow for the condition of their child is "abbruttiscono" and see the world around them as the enemy, that is and insensitive, their lives become very sad at this point and "turn around" almost impossible, "anger" in their private life has also passes through this road and is the most inaccessible
when rehabilitation is planned allow 2-3 physiotherapy sessions a week, at home or ambulatory, often in cycles, now with expensive tickets, the speech is not understood also as an opportunity to "build" alternative forms of communication to the verbal form, the techniques known as the CF (facilitated communication) AAC (augmentative and alternative communication) are not always carried out with cooperation between health, education, family. We are in total chaos. A SOCIAL DESERT
In Piedmont there is a developmental rehabilitation center, a center where various techniques are provided for rehabilitation including the ETC (largely unknown) hippotherapy, and others that public health is not recognizes and does not, the families that wish should be charged cost of this commitment and it is unacceptable that only for economic reasons there are children who are denied these opportunities.
My daughter Claudia because of many deficiencies of inexperience on our part as parents, we place great trust in the next intended as health, education, humanity has lost "many trains" who stole a lot of opportunities and possibilities to be a part of life as inclusion, participation, and citizenship, I can not do anything for you if you do not love it, offer the comfort of the family, it recognized the right to treatment, try to offer a suitable AFTER U.S..
I wish I could bring out the issues and rehabilitation try to give my small contribution so that this state of things change: Maybe my initiative I can get more people involved if many share.
If I can arouse the attention of those who live this reality and make it part of it.
If I can awaken the sense of sharing those unfamiliar with this topic.
If I do not understand that the physical or mental disability to become a "person" a human being, if I can involve municipalities, institutions, civil society in a project that is not social wealth and mere personal gain.
If I can be a success for everyone, children, mothers, fathers, brothers, sisters, for the company.
There will be criticism, this I know, but who dares not is never wrong, I have learned from Claudia dare that it is the duty, law, life. If it is true that hope as Neruda has written two children outrage and I will do my courage, disdain for the way things are, the courage to change them.
The project
Per creare un Centro riabilitativo dell’età evolutiva in Piemonte servono SOLDI, TERRENI, PERSONALE, io non ho nulla di tutto questo , ma ho una vita da raccontare, 60 anni, non pochi, e non facili, ma istruttivi e determinanti che hanno fatto di me la persona che sono oggi.
Io inizierò a scrivere e raccontare la mia modesta vita suddivisa , come spesso capita di dire noi genitori tra LA MIA VITA PRECEDENTE riferita a quella vissuta prima che Claudia ve ne entrasse a fare parte e la mia VITA CON LA DISABILITA’ per raccontare le avventure, disavventure, speranze, sconfitte, vittorie vissute insieme a lei, non mi sono preoccupata di cercare un editore che pubblicasse questa mia nuova fatica letteraria che I hope arouses interest, as if composed in the silence, if not advertised, if not done by the media would not know the meaning I wish and hope, which I will write, I will start in the coming days to publish a page a day of my adventure.
If a publisher is interested in the publication and dissemination of copyright will be donated entirely to the creation of the rehabilitation center.
If some (fly high) director may be interested in some chapters to tell the life of any economic benefit will be donated to the project.
If some entrepreneurs want to invest money for pure humanitarian gesture or social significance in this undertaking will be the only compensation the gratitude of so many children and their families.
If someone wants to devote heritage, offers of all kinds, machinery, space, property, for the realization of this undertaking will be welcomed with joy.
If health professionals want to work for the realization of this major project will be welcomed with enthusiasm that we guarantee the highest quality.
SE, SE, SE, at the time I can say only this. Oh no, one more thing, I would not want to be able to manage money, so we also need figures to take charge of this challenging task.
Even if ... ... ... ... "It is impossible," said Pride. "It's risky," said the experience. "It's no" cut off the reason. "TRY" whispered my heart! I listen to my heart and I try.
Marina Cometto
http://www.disabili.com/blog/una-storia-impossibile/
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