"Ever since my wife died six months ago, Bernard confesses, I've kept it from my son, who is severely disabled. The shock would have been too much for him. But since then, I don't recognize him anymore. He's changed: sometimes aggressive, sometimes withdrawn."
Like many other parents, Bernard's experience reveals something crucial: a child with limited capacity for expression often translates moral suffering into a radical shift in behavior.
According to Anne Bindels, a palliative care nurse and mother of two children with Down syndrome, "it's a sign that the child is deeply affected by his mother's death, even if he was never told about it." Fatigue, agitation, the return of autistic behaviors, loss of appetite, mutism, functional regression, self-harm—these behavioral changes are all cries for help from the people around the child.
Don't hide the truth
Of course, it's never easy to talk about death with a child. We fear he won't understand, or that it will traumatize him—especially if he has a mental disability and the loss touches him directly.
"But words—however inadequate—are always better than silence," insists Dr. Pierre Nguyen, a child psychiatrist. Whatever his level of disability, a child senses the atmosphere of grief or confusion surrounding him. Often he possesses an almost sixth sense, a particular intuition and empathy for others' pain. So why choose to lie and exclude him from the family's mourning?
Whether severely or mildly disabled, the child needs to hear the truth. Nothing is more painful, nothing more anxiety-inducing, than discovering a death "after the fact"—and feeling left out.
"On the contrary, if the truth is revealed gently, without showing shock or distress," says Jacqueline Massonnet, a clinical psychologist, "it's a sign of respect and trust in his abilities." This makes it essential to tell the child. Use simple words suited to his mental age. You might say: "Something serious has happened that makes us very sad. Grandpa has died. We won't see him anymore, and we'll miss him. But I think he is happy with Jesus now."
Let him take part in the rituals of goodbye
Although the announcement will inevitably be a trial, the key is that the child feels included in the family circle. Parents shouldn't be afraid to show their own grief. They can say they're sad, because "it's not right to protect your child from every emotion at any cost," Dr. Nguyen warns. Like any life experience, the death of someone we love is a constructive milestone in a child's growth. It forces him to confront reality—not the virtual death of television or video games. So it's appropriate to bring a child to a funeral or to the cemetery. These farewells should be explained beforehand in concrete terms—"it's actually the best way to help him face death with peace," as Christine Ponsard wrote on this subject.
Even if we don't have answers to all his questions, it doesn't matter. What the child retains is the trust we can give him and the hope that carries us forward… however small it may be.
A caring presence at his side
After the funeral, grief work—the psychological labor of mourning—involves gradually assimilating the loss of the loved one. The child needs a trusted person who can help him express his pain, confusion, anger, or guilt. Mentally disabled children are especially prone to guilt. It's important to remind him that he is not responsible for the death.
If he cannot speak, images can help. Let him choose a drawing that matches what he feels. If the parent—too deeply grieving—cannot talk about the deceased, find another intermediary: a family member, a friend, or a psychologist. "Whatever his reaction to learning of the death, and even if he appears indifferent, the child needs to feel supported by a caring presence and gestures of tenderness," Jacqueline Massonnet emphasizes. If he allows it, hold him close to restore physical contact. Then look him in the eye, eye to eye. This way he can sense the stability of the person supporting him and calm his anxiety.
In memory of the deceased
At first, the child may seem not to understand that the loved one is gone. He might ask: "Where's Mom? When is she coming back?" It's important to give him time to work through his grief, even if he begins with denial or difficulty accepting reality. Gradually, through conversation and with help from specialists, you can guide him forward toward understanding that death is irreversible. "The goal is to help the child understand that the deceased won't return, but will live on in his memories," Dr. Nguyen advises. This is what Françoise, a 22-year-old woman with Down syndrome, understood when she remembers her deceased family members: "I'm always sad when I think of them, but all these dead people are alive in my heart, and I keep loving them."
Once the person we loved is no longer physically present, "it's essential to keep his memory alive," Anne Bindels adds.
Create a photo album, gather some of the deceased's belongings, recall shared memories together, bring flowers to the grave or light a candle in the evening during family prayer. All these acts allow the child to cultivate the memory of the loved one, gradually accepting the permanent separation and the truth that life goes on, in spite of everything.
by A.J., translation (2018) by Elisabetta Thornton from Ombres et Lumière, n.177/2010
===FINE===