An excerpt of the words written by Simone Fanti in an interesting article Corriere della Sera of 22 April 2013. Beyond the personal experience, these are things you should know and spread.
In a rainy Turin took place two days (20 and 21 April) the conference dedicated to Siblings, English term, without gender distinction, indicates the brothers and sisters of people with disabilities (www.siblings.it), organized by the Foundation Paideia. Invisible spoke last week sketching some reflection (READ Not only saints or uncaring). And on this occasion we could not fail to observe the other side of the moon, the one who is too often invisible - because they need less care and attention - in the family: the brother or sister of the person with disabilities. People living on their skin what happens to joint, but are often considered too young to take on the burden and responsibility of choices, such as the management of the future of the person with severe disability. Players on the bench who have the knowledge that in a near or distant future will have to take the field next to the person with disabilities, but at the moment it almost impossible to utter a word on the management team. Perhaps difficult to find a common thread of the event in this variety of sensations so, without claiming to be exhaustive;, I'd like to highlight the words that came from those with greater force by the protagonists thoughts. Thoughts of Arianna 18 age, with autistic brother, Cristina di 35 years with a sister with cerebral palsy, Niccolò, 24 years with autistic sister, Deborah, 33 age, sister of Damian with cognitive disability ... Here are some.
Loneliness and guilt. A concept perhaps more difficult to understand than the previous for those not living in a situation of difficulty. Because those who have a brother or sister with disabilities should feel a sense of guilt? The feeling inadequate, living two lives, his own and that of the caregiver, is part of the luggage of each siblings. The guilt comes from the feeling of not being able to live competamente none of the two lives. "If I carry on my family, I take care of my son ', says Deborah, "Then I realize I do not have time for my disabled brother. And vice versa, if I spend time with my brother I would have stolen something to my son '. Constantly pulled by the jacket from the duties, is not the time for self-, to understand and realize themselves. And you get to thinking how wonderful life would have been without the bulky presence of disabled brother. Then try a deep sense of shame for that thought.
Resentment, that is coupled with anger. Two other terms, of profound humanity, that emerge from the confession of some boys: resentment and anger towards life, but also to those parents who have "abandoned" to treat a brother or sister in need. Anger toward the innocent brother who is causing so many difficulties, that is because of the sadness of the parents.
Love, profound, what some women and girls in the group have expressed unconditionally for that helpless puppy that is their brother or sister. Come Arianna (living in a family with autistic brother, author of a photographic exhibition on autism) that gently says, "Now that I have to leave home to study at university do not know how I do without my brother. We have a few years apart and have grown in symbiosis. We have never lived apart for more than a few days. But I have to build me a future, and then you can also take charge of him ". Or as Paola sister of a girl with Down syndrome who says "when he was born Elisa thought: saturate the love, so if you do not receive it from the outside will have enough. In fact we have received from you more than we have given to us ".
Sharing More than a word is advice and a request that the siblings throw from Turin. A challenge for parents who are experiencing difficult situations. A word full of meaning. Sharing of information and explanations so even at an early age, sharing in the sense of socialization or the needs of children living, maybe even just a holiday (see the initiative holiday Paideia), with peers who have the same problems. But above all, shared responsibility to build together the future of both boys, with or without disabilities.