Does my child understand his handicap? Should I talk to him about it? From the start of his life, a child gradually becomes aware of his difference. If his mother received a prenatal diagnosis, the child in the womb likely felt wrapped in anxiety. It is as though he loses his identity as a child for the sake of an ill-defined status, designated by terms more or less learned—"mongolism," "Down syndrome," "trisomy 21."
The child becomes an object of analysis, of inquisitive looks where tenderness often has no place. He is present when the possibility of abandoning him, of denying him as a son, is discussed. At birth, he senses his parents' emotions—their worries, hesitations, fears for the future.
Gradually he notices his difficulties compared to other children. He suffers too from the gap between what he can do and what is expected of him. Throughout his life, the eyes of others—deficient or excessive—will be a traumatic experience. He must adapt to these clumsy looks of flight or fear, infantilization or pity. Speaking with him about his syndrome, therefore, helps him become aware of it and accept it. It is very important to begin, from the start, explaining to him in simple words his identity and place in the family, but also the limits and constraints imposed by his condition.
True, at first he will not understand the meaning of the words, but he will be sensitive to the tone of your voice, to the tenderness and respect with which they are spoken. It matters little if these words are accompanied by tears, so long as he feels loved for who he is. The child should grow accustomed to hearing about his disability. What must be avoided at all costs is a revelation—often brutal—made by a stranger, with no chance to look or reply. That revelation should instead unfold gradually in the ordinary rhythm of family life.
Speak to him in our own words, those that come from the heart. Words that help him understand that he is accepted for who he is, that he is not alone in having differences, fears, and frustrations, and that he can count on others' help. One day perhaps he will ask questions himself about the origin of trisomy 21 or his difficulties.
Do not avoid such questions. Talk too about the feelings they stir up. Doctors and psychologists experienced in this field can help you address these themes. Help him understand that he has his place, like everyone else, in the family, at school, in society—and that he is not first and foremost a Down person, but a unique individual with his own difficulties and flaws.
How can I help my child accept his condition better? Speaking to your child about Down syndrome helps him know and accept himself as he is, helps him understand that dialogue is possible and that there is no shame in discussing it. It is important for him to know that you are available to discuss his condition or to find good people to talk with whenever he needs to.
For your part, it is long and difficult but essential that you yourselves accept your child's condition. Indeed, the more those near him accept his handicap and the various difficulties it brings, the more capable the person with Down syndrome becomes of accepting himself. Discover this child for who he is.
Celebrate his progress and encourage him. You must neither hide his difficulties nor overestimate him, but explain his limits clearly, placing his strengths first—the things that can help him move forward.
Will my son be able to get a driver's license? Drive a car or motorcycle? Unfortunately, no. A driver's license for cars or motorcycles is not feasible. Even if the young man shows ordinarily reasonable behavior, a person with Down syndrome cannot handle an unexpected event. This is a difficult reality to accept, especially for boys, but the young man's safety—and that of everyone on the road—would be too seriously compromised.
Can he marry? Have children? Marriage is legally possible, unless the person is under guardianship, and it represents a dream for many of them. But it is a commitment few can undertake. The young man with Down syndrome cannot have children because of near-constant infertility. The young woman with Down syndrome can be fertile, though motherhood is not advisable for her for many reasons.
A young mother cannot provide the care and education her child needs, and if it did happen, she would likely be deeply troubled by it. Her parents, often elderly, would face responsibility not only for their daughter but for the grandchild as well. Moreover, the child risks inheriting the mother's syndrome and the father's handicap if he too is disabled.
You must therefore help the young woman accept, and understand, that like many other women, her vocation in life is to do many beautiful things—but not to have a child. This will not prevent her from living a full and successful life. Parents can point her to unmarried women she will be proud to identify with.
How can I help my child navigate puberty and sexuality? The boy or girl at adolescence, and then in adulthood, has—like every young person—feelings that bloom, but for him or her they are harder to control. They are often very, too expansive in expressing their affections. Parents must teach them early that while loving another person is wonderful, certain gestures belong to one's private life and are not done in public; that you should not hug or embrace everyone you meet; and that friendship or love presupposes mutual respect.
The adolescent must learn that his or her body belongs to him or her, that no one can touch it without consent: "you don't do it if you don't want to." Heartbreak can sometimes run deep and be painful, hard to recognize because the young person does not express it clearly. It may be revealed by unusual sadness or a change in behavior. Among girls, expressions of affection do not always translate into a desire for actual sexual activity.
olding hands, kissing, and embracing often represent the ideal. If sexual relations do occur, they are not always satisfying; sometimes they are experienced badly, because what is seen on television or in films is very different from what happens in reality.
Boys too do not always seek actual sexual activity. The importance of discussions on these matters by the family, doctor, psychologist, and educator is no less great. Of course, each person is unique, and there are no ready-made recipes.
You should talk about puberty with your adolescent before it begins. If there is an older brother or sister, it is comforting and reassuring to become like them. In general, becoming "grown-up" is very affirming. In any case, for both young people and their parents, it is helpful to meet with a doctor or gynecologist (for girls) who has experience with Down syndrome. Topics related to puberty and sexuality are often difficult to address with all adolescents, whether they have Down syndrome or not.
Translation M.B.
Next issue: Alzheimer: elderly people who have become disabled, the world around them, and those who care for them.
Support for children
The allowance for accompaniment, which is paid to those unable to walk without help or who need continuous assistance to carry out daily activities (eating, dressing, and so on), can be recognized even for young children. It is true that small children, simply by virtue of being very young, require continuous care in any case. But there can be medical situations requiring assistance that is different and more demanding—both in time and in kind—than what is needed to look after a healthy child. This was decided by the Court of Cassation in ruling no. 11,525 of May 17.
(from Famiglia Cristiana no. 39/2006)