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Share The birth of a disabled child

Mara Jos

There is a great discussion about the "motes" or way of referring to children born with a disability: children "disabled", "different", "with special abilities", "with different abilities", "special" children, "children" with disabilities ", " handicapped ", " deficient ", " handicapped ". The fact is that, who are parents of children who have been born with a congenital disease, we know how difficult it is to assume the birth of a child with a disability and we know the process of acceptance and reorganization of our family lives.

Faced with the news that our baby is a carrier of a disabling disease, we are deeply affected. From the moment of birth, we experience a mixture of confused sensations, not only for the diagnosis, but for the intense feelings towards the baby and towards ourselves. It is logical: we imagine and expect during pregnancy a little person and we run into another, different to the one we fantasize for nine months. There begins the duel, whose elaboration is complicated, because it supposes to disassociate ourselves from that ideal son to approach us to the reality of the son with disability. This is a long but necessary process, that of "accepting" the child.

In the initial state of shock and anguish, a state of anger or sadness follows. I remember when my husband and I were diagnosed after the birth of our youngest daughter, Ruth: congenital amaurosis of Leber. " Impossible ", we think, " The doctors have been wrong; our daughter can not be blind . " This is the hardest time to go through: that of denial. For mothers, it is doubly hard: we still do not recover from childbirth, our puerperium begins, and we are already gathering strength to overcome it. Finally, we find balance and we are flooded after a feeling of confidence in our own maternal capacities to care for and love our child as he is. The situation is reorganized, adjusted, and the family projects its life according to the needs of the new being.

The important thing is, once overcome the pain, rebuild new fantasies and expect infinity of gratifications of this baby that was not expected. At the end of the day, what is at issue is "to aspire to leave two lasting legacies to our children: one, roots; the other, wings . "

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More information | Discapnet: "My son is different" (pdf)