Parents worry, to varying degrees, about their disabled child's passage into adulthood.
They hesitate to talk with their teenager about the body's transformation at puberty, about first steps toward love...
Dr. Odile Réthoré, a physician and friend to people with intellectual disabilities, speaks to them in her direct, honest voice.
The metamorphoses of adolescence—many parents wish this would not happen to their disabled son or daughter. Yet it does. It happens to them as it happens to everyone else, in the same way.
The young person will experience all the questioning, all the anxieties and uncertainties of adolescent crisis, with greater difficulty than others because he or she will struggle more to express what is felt. The fears and anguish that arise in the family, social, and school environment risk deepening his or her fragility.
These adolescents need accompaniment with greater attention and kindness, remembering always that self-respect and self-esteem flow from the regard we perceive in others' eyes. Never humiliate or ridicule. Respect their natural modesty. Do not burden them with shame. Help them grow aware of the new possibilities that adult life offers, and also of their limits. Permissiveness at this moment often signals the abdication of parents and educators. We do not wish to interfere, so we seek solutions that merely postpone dealing with the real problems.
In Truth
One young man believes he is strong, that he can do anything: "I'm big, I'm strong," he tells me, flexing his arm or showing me the first trace of hair on his lip; "like Dad..." Yet he must accept what he can actually do, in every area. Another, more fearful, faces the opposite: "I can't"; a kind of paralysis before anything new. In both cases, we must walk through this suffering in truth: "It's true you can't do this yet, but you can do this. You can't drive a car or motorcycle, but you can ride a bicycle."
Do not let him do everything as he pleases, but do respect his taste for risk—after you have, together, set reasonable safety limits and kept them firmly. Do not waver from what you have agreed.
Help him express his anxieties, his suffering, his desires, while protecting his privacy (never speak about him to others without his consent). Allow him to meet alone, or with someone he trusts, someone with whom he can share his worries.
Help him respect himself—we can never love others when we do not respect ourselves. Never cancel his disability, or mask it, or pretend it is not there. The disability exists. He carries it, bears it, and claims the right and the means to live with it. Our job is not to disappoint him. Let him feel, deeply, that as he is, like everyone else in the family, he has his own place—his irreplaceable place. To help him know this, give him a task suited to his age and interests, even when he is small. Never do it for him when he refuses or forgets. Help him understand that if he does not do his part, someone suffers. The harmony breaks. But in return, do not forget to tell him how much pleasure we all take in his contribution to the life of the home.
Most of all, he must feel loved in the hearts of his parents and family members—not out of pity or compassion, but simply for who he is: a unique and irreplaceable person.
He must find this certainty in his relationship with God, which requires from us a special accompaniment, a deep respect for his conscience, and the willingness to have our own "good conscience" called into question.
Adolescent Crisis Is Inevitable
All parents fear this adolescent crisis; they wish to avoid it, to deny it. "Sexual feelings? Desires?... But they don't have any! They're children!"
But that is not true. They are like all others in this. They are normal. Girls menstruate and can dream of a husband, a child of their own. Boys find girls beautiful, and usually have good taste (when they speak to me about a caregiver or teacher, they often say "she's the pretty one" and point out the other). They like to touch and be touched. They have erections and ejaculations. For most of them, sexual life is solitary; masturbation is frequent. These adolescents, these young adults, are not monsters, as some believe.
When we fear that sexuality will escape the control of a weak mind, when we fear it will become unruly or burdensome, we too often turn to psychiatric treatment, contraception, or even the sterilization of boys and girls alike.
Anxiety Is a Poor Guide
Denying sexuality makes it explosive. We must learn to tame it, to socialize it. We must teach children—from an early age—the rules of "appropriate behavior," the "good manners": you do not kiss everyone and anyone; you do not undress when and in front of whomever you wish.
The solution is not to lock them away in a family cocoon. Some think the love of Dad, the tenderness of Mom, is enough for this girl or boy who has become an adult. But no. Parents risk creating a suffocating relationship where every other person is shut out. I will never forget the cry of pain from an elderly couple who brought their only son—disabled, now forty-five—to me for the first time. "We have become his hostages," they said. All three hated each other, deeply, for years and years.
The natural drives of these young people can be transformed, integrated. I do not say this is easy, or without suffering. But it is possible because this energy is educable. Over the years, it changes form and object.
It can be directed toward gratifying activities—sport, theater, music, service to others—activities that bring balance all the more because the adolescents find shared pleasure with others. Real friendships can grow there. The vital energy, the energy of love, is channeled toward others, not through physical contact, but through gestures of gentleness, kindness, and solidarity.
Yet it remains true, especially for those with mild disabilities, that there is deep suffering when they seek a soulmate to share with, a person to love—as their siblings do.
Accompany, Listen, Comfort
If we mock them, if we react with violence, if we shut the door, the adolescent risks a profound crisis. Their suffering is real—the suffering of an adult, not a child who will soon forget. The parents' suffering, their legitimate anxiety, all of this is perfectly real. It falls to us—educators, doctors, friends, perhaps grandparents—to walk with this suffering, to listen to it, to comfort. And to begin again.
On this obstacle course, parents are not alone—or rather, they should not be. From the start, the only urgent thing is to create a warm, effective, and discreet environment around this family, because for each person the questions and anxieties are different. The one true urgency is to dismantle the anxiety.
Let time do its work. Walk alongside them discreetly. The young person will gradually understand what he or she can do and what cannot be done—from the moment we have respected in him or her the privacy that gives dignity to his or her personality, that gives the right to be recognized as a person in all respects, capable of loving and of occupying his or her unique place in the human family.
- M. Odile Réthoré, 1995
O et L. n. 107