Gianluca is 24 now, hearing but cognitively delayed. When he was four months old, doctors diagnosed him with West syndrome—a series of small epileptic seizures that caused brain damage, primarily in his language center (Broca's area) and in his frontal lobe, which controls cognitive development. The prognosis was stark: he would never understand or express himself in any language at all.
We were living in Belgium at the time, and
Gianluca was fortunate enough to enter an experimental program at age two, one designed for children with Down syndrome. It involved teaching gestural language from the very start. When we returned to Italy a few years later, we tried many different approaches to develop his communication—various forms of augmentative and alternative communication. But by the time he was 12, I realized that traditional speech therapy had hit a wall with him.
At that point, his communication came through homemade gestures that only the people around him every day could understand. That was when I heard about Dr. Luisa Gibellini, founder of the Cooperativa Le Farfalle. She was using Italian Sign Language (LIS) with deaf and hearing-impaired children. I reached out and asked if she would work with my son. That's when everything changed for Gianluca.
There is no single solution to communication difficulties, but dismissing Italian Sign Language means giving up one of the most powerful tool available.
Many people thought my choice was reckless.
More than a decade ago—and often still today—people believed that introducing LIS as a primary communication channel would isolate children, would prevent them from learning to speak. Few understood the value of developing a form of communication that could meet their cognitive and communicative needs. As Valentina Colozza explains in a recent article, "Language development in early childhood is fundamental to healthy ego development. When this capacity is delayed or blocked, the effects ripple through all areas of growth—cognitive, psychological, and emotional. When people cannot express their own thoughts, their bodies become the only outlet for feeling. They act aggressively toward themselves or others. They develop behavioral problems and physical symptoms—chronic pain, eczema, asthma, dermatitis."
When we started this path with Gianluca, I didn't really understand what LIS was. Like most people, I thought of it as mime, as pantomime. But as I took courses, I discovered it is a true language in every sense. It uses a visual-gestural channel: the eyes listen and the hands speak. It has grammar. It has syntax. I thought it was universal, but signed languages differ by country, just like spoken languages do. They are full of regional variation.
LIS is learned exactly like any other spoken language.
So Gianluca began to learn a new language at age 12. A language that demands fine motor control, lateralization, coordination, and the ability to recognize another person. He had none of these skills. But he developed them. He was driven by the hunger to communicate, by finally having a tool within his reach. It was not easy. He worked hard. People gave themselves to teaching him LIS with real passion. He attended three hours of speech therapy a week in LIS. He worked with a neurological development program based on the Fay Institutes' methods, building his foundational skills. Silvia, his communication assistant at school, helped him. Fabiana helped him at home. His sisters helped him. Fattha, his personal assistant, helped him. And I learned LIS and used it at home with him. It was total immersion.
It worked.
Gianluca can now make himself understood on simple things with his voice, and for more complex matters, he uses LIS. He sees a psychologist who is fluent in sign language, which helps him work through his struggles. He's involved in independent living groups through the Ceralaccha Association. He does theater with the Integrated Workshop Julien. He drives go-karts.
I don't believe there is a single perfect solution to communication difficulties in our children. But to dismiss Italian Sign Language is to throw away one of the most powerful, flexible, and rewarding tools available. Yes, there are real obstacles. When Gianluca has a problem on a tram, he can't ask for help. If he gets lost, he can't call home and tell us the name of the street. His peers stare at him like he's an alien. Strangers on the street do the same.
But the choice is between communicating with only a small fraction of the people around you, or not communicating at all. It's between developing your own abilities and living without hope.
Gianluca has come so far. He got here because people believed in him and poured themselves into his life. So many people to thank, from the depths of my heart, for standing by him and never giving up on him.
*In psychology, a behavior, feeling, or idea is called ego-syntonic when it is in harmony with the needs and desires of the self, or consistent with how a person sees themselves.
Multimodal Communication
There is no single solution to communication difficulties, but dismissing Italian Sign Language means giving up one of the most powerful tools available.
Dr. Gibellini explains some of the features of the communication approach she used with Gianluca and with many other deaf and hearing children.
Multimodal communication is the educational approach that the Cooperativa Le Farfalle offers to hearing children and young people with severe communication disabilities. It is not a method but a methodology that draws on many tools: Italian language in all its forms (spoken, written, signed), Italian Sign Language (LIS), symbols, and images.
When a child shows the desire to communicate but struggles to do so with speech, LIS can offer an alternative language that meets his communicative needs at that moment, without closing the door to the possibility that he might learn and speak Italian in the future.
The first experiments in Rome date back to 1996. Before that, some educators had committed themselves to offering deaf children a bilingual educational approach, believing it was right and respectful to give them the chance to acquire their natural language spontaneously.
«Every deaf child, regardless of the degree of hearing loss, should have the right to grow up bilingual. Through the knowledge and use of sign language alongside spoken language—in its written form and, when possible, its spoken form—the child can fully develop his cognitive, linguistic, and social capacities.» (François Grosjean) Drawing on what we learned from bilingual education for deaf children, we taught hearing children with severe communication disabilities to make their hands speak.
At first, we simply offered an alternative language because some children and young people struggled to articulate the sounds and words of Italian. But then we noticed something: LIS was also helping them understand Italian better. The hearing children who came to us often had other difficulties too—epilepsy, dyspraxia, cognitive delay, and behavioral problems often rooted in the inability to communicate. Because of their cognitive delays, these children struggle to decode spoken language. But they grasp sign language more easily. And that's because of how sign language is constructed—differently from Italian—it lets them see what is being communicated.
