Being the father of a disabled child
by E. Aceti
Having a child is an experience common to many couples and is usually joyful, positive, full of tenderness and, even if tiring, leaves a full joy inside, as if of a goal that the new parents have achieved. It happens that the couple's love slowly matures and is enriched by parental love.
Having a disabled child is different from other stories. it is a unique, full, profound experience, but also full of tension, anxiety and often great discouragement. We understand that life is hard, tiring, but... it can still be happy. In fact, maternal and paternal love are put to the test when a child is affected by any disabling pathology, as the future prospect is perceived as tiring, uncertain and full of tension.
Let us then try to take a look at the parents' experiences, as far as possible, and at the possible paths that can be put in place.
Parents' experience
The reactions of parents and relatives when faced with the birth of a child with a disability are varied, because they are due to the education that they themselves have received and to the emotional/affective experiences of their life. The disabled child confronts the parents with their imagination and their deepest desires.
The father can help his wife and family with a surplus of attention, aimed at making the situation less dramatic and supporting his wife through appreciation and advice that is full of hope, despite fatigue and tension.
The most frequent questions are: «Will he live? What will his future be like? Will we be up to our educational task? and after us... will he be able to get by?".
Naturally, the answer to these and the many other questions that parents ask themselves is not simple, because each story is an event in itself, personal and requires answers that take into account many factors.
However, the variables at play can be summarized in four:
The child's pathology: certainly the most important issue is the degree of disability of the child, the prognosis, the possibilities of treatment and everything that is at stake in order to combat the disease causing the disability.
The personality of the parents: due not only to the education they themselves received, but above all to the ability to live a new family history crowned with suffering and frustration (but also with joys and conquests).
The surrounding environmental fabric: that is, how much the family can rely on for the child's growth. The grandparents, the uncles, the closest relatives, but also the community, the parish, the surrounding human connective tissue.
The parents' life philosophy: there are those who are believers and see in suffering the possibility of bearing witness to the love of God and set out to cure the illness by always supporting the child. There are those who do not believe, but nevertheless have very positive human values and believe that their task is to preserve and safeguard the child's future. Other parents may be less equipped and struggle more, showing symptoms of discouragement and discouragement, or of confidence and hope.
The father: support for the future
The first precaution that the father must take is to open the family to the community, encouraging the inclusion of the child in all those initiatives aimed at full social inclusion
Naturally, it is important to understand that no one can set themselves up as a judge or teacher, but it is necessary to understand that every family is part of the great human family and, even if the child belongs to that given couple, in reality it is also ours, everyone's, the community's. There is an African proverb that says: "It takes a village to educate a child." This proverb is beautiful and very true.
But it is even more so when the child is fragile and in need of care. Because the greatness and civilization of the community is measured not so much by the things it possesses, but by its ability to protect the most fragile and suffering.
The father will then worry about finding, as far as possible, all those relationships that allow the son to express his potential, personally seeking out the opportunities present in the area.
What education?
After describing the experiences that almost always come into play in the life of a family with a disabled child, we briefly mention what needs to be kept in mind on the educational side.
Without prejudice to the fact that the objective is to help the child achieve the maximum possible autonomy, it is essential to draw on all the resources that science makes available, the various types of rehabilitation, the various personalized supports such as support teachers or the various necessary aids.
But even more fundamental is the attitude that the family must maintain. Maximum commitment and attention are needed, together with maximum hospitality that will slowly make its way throughout life. Yes, because a sick child can give a lot to parents, if the latter allow themselves to be shaped by what daily experience teaches them.
You come to understand that life is not about money or wealth, but about love and sharing. It is understood that the child's small achievements are able to satisfy the numerous efforts and that the joy is personal, due to the ability to sacrifice oneself for something greater. We understand that openness to the community allows others to participate in a dimension of attention and care that helps us discover the humanity within us.
In short, disability must be fought with all energy, but the person must not only be loved, but must be recognized in his dignity, which consists in giving how much its existence offers us.
The father's love always hopes, always supports, goes beyond the various problems, to look for the precious pearl that favors the true human inclusion of the disabled child. While we understand how important it is for the community to support families with disabled children, on the other hand we must thank all our disabled children because, despite their illness which must be "fought" with all our strength, they give us the opportunity to understand the substance of life. In fact, efficiency, competitiveness and careerism remain defeated when faced with a disabled child, giving way to solidarity, sharing, tenacity, ... love.