"If our older daughter hadn't been born," my husband once told me, "I would have killed myself." I overheard these words by chance in a day rehabilitation clinic for children with psychological and developmental needs—where the young patients, mostly preschool age, struggled with speech and learning disorders rather than severe illnesses. The sentence haunted me for a long time. How many times, I wondered, had I thought something similar? How common is it—whispered or shouted—for parents to feel they simply cannot cope? What strategies exist for living with a disabled child?
There are no winning formulas, I believe. Much depends on the resources we discover within ourselves, often only when forced to face an extraordinary and unwanted event: the birth of a child with a disability. We may find comfort in faith, help from family, and today also in psychotherapy and antidepressants. Work sometimes becomes a refuge, numbing us against worry and inadequacy. Reactions vary widely across cultures and social classes, yet they share a common thread: the need to reach an equilibrium—one we must renegotiate year after year—that recovers the deep meaning of a "different" life lived alongside our "different" child.
Medical science has made undeniable progress in recent decades, yet it remains nearly powerless against vast numbers of diseases, especially genetic ones. Rehabilitation has improved, and there have been significant legislative advances and institutional attention to disability issues. Still, services remain inadequate—schools with hastily trained support teachers, a shortage of assistants, and only nominal inclusion; workplaces still find clever ways to evade hiring mandates—and parents are left contending with chronic lack of information.
In my experience with Dafne, there exists an "inside" and an "outside." The inside is my capacity to learn to live with her condition as a child with special needs. The outside is the objective reality, the problems she and we encounter daily beyond our walls. The balance between inside and outside constantly shifts, and my mood follows like a tide, rising with victories and falling with defeats. That mother's words made me reflect that emotional reaction is not always proportional to the severity of a child's condition or disability—especially at first, when a medical diagnosis first marks the difference. Otherwise I could not explain why some parents unconsciously refuse to see their child's disorder (I remember a pediatrician couple who long denied their son's autism), unless it was obvious from birth. Yet we must reach a state of calm, however fragile, to step outside ourselves and our own pain and begin to ACT constructively for the child. Without fear of asking for help. Without the burden of thinking others cannot understand or share our burden. Family can play an essential role, offering both psychological support and protecting the couple's vital spaces together. Many mothers complain that grandparents become overprotective with their disabled grandchild, implicitly questioning the parents' ability to do their job well. This is a grave error—nearly as damaging as denying obvious difference and minimizing both the emotional devastation of the parents and the real problems the child faces. Yet the grandparent-grandchild relationship can be an enormous source of richness for both. My own mother said just days ago: "Dafne is the person in the world I love most."
Everyone involved in the life of a disabled person—professionals, caregivers, educators, all of them—should never forget the parents. Any attitude that diminishes them harms the child, who can never be separated from his or her family context.
What is often overlooked is this: beyond school inclusion, beyond capable and caring doctors and staff, beyond effective rehabilitation, one of the steepest obstacles is social isolation. Sometimes we are fortunate to find welcoming, sensitive people—like the friends at Fede e Luce—but sometimes your daughter is turned away from the playground "because she's big and can't talk," and the mothers in the neighborhood never call back, and the support teacher asks after two years in preschool: "Should I send the invitation to your daughter too, when there's a birthday party at someone's house?" (In four years at school, my daughter has never been invited to a classmate's home). I persist, stubbornly, in being surprised, because she is always cheerful and very sociable. She has the gift of making everyone who knows her love her. Perhaps the degree of disability matters less than I fear. I suspect it is our culture that remains hopelessly behind. There is still a grave gap between what appears on paper and what happens in reality, between legislation and common mentality.
So I return to this conviction: we must ACT ourselves. We must ask—even demand—not only that services improve, that support teachers be better trained, that disabled children be treated with respect as people, but above all we must break the isolation. It falls to us—parents and families of disadvantaged children—to share useful information, to exchange experiences, to offer each other solidarity and support.
- Carlotta Fonzi Kliemann (Dafne's mother), 1999
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