We too did not give up our social life, and some of our friends, along with our extended family, offered us emotional and practical support on many occasions. Among these people, some became true role models for A., helping to fill the inevitable gaps and imperfections that always accompany parenthood.
Faced with the communicative difficulties inevitably encountered by children with severe prelingual hearing loss, we chose an oral education for A. and were fortunate to discover a natural rehabilitative approach, one that respected normal stages of development: the “Creative, Stimulating, and Rehabilitative Method of Oral and Written Communication through Musical Structures” developed by Zora Drežančić. It aims at acquiring complete and correct language through a multisensory approach, while respecting each child’s characteristics, abilities, and motivation.
Moreover, by following Professor Drežančić during her work travels across Italy, A. had the opportunity to meet many deaf boys and girls, and with some of them he has maintained friendships that are still alive today.
I insist greatly on the importance of building, from the very beginning, strong bonds that go beyond the family circle — especially considering the degenerative nature of the retinal disease associated with the syndrome. Indeed, the network that has formed around our son, also thanks to his extremely sociable personality, has not diminished as his vision progressively worsened, partly compromising his independence and the fluency of communication. Since this was a very gradual process, it allowed everyone to adapt over time, constantly finding strategies to overcome obstacles.
But let me take a step back to focus on my own emotions and initial reactions. As usually happens with Usher syndrome, the first discovery was the deafness. The shock was tremendous, especially when thinking of all the experiences — connected to hearing — that
my son would miss: the voices he would not recognize, the music he would not enjoy, the atmosphere created by the sounds of nature…
I was deeply attached to my work as a teacher, and giving it up to fully support his rehabilitation path was hard. I remember thinking immediately: “I won’t do it, I won’t give it up.” But that conviction lasted less than an hour — soon replaced by the awareness that it was the only path to take.
As I said, my first thoughts and emotions were focused on what A. would not have, on what he would miss compared to other children. But very soon, gradually, the richness of positive aspects connected to his way of being and growing began to emerge. Every small achievement became a source of great joy, and above all, I saw a lively, sociable child with a strong personality. And so, little by little, confidence prevailed — the certainty that he would make it.
When, at four and a half, he began to lose his night vision and it was confirmed that he had a severe degenerative condition affecting his sight — the very sense that could best compensate for his hearing loss — despair nearly took over. Once again, being able to share that pain with family and friends proved crucial; social support was fundamental.
Once again, A.’s father and I managed to see what was still there: a bright, energetic child, full of zest for life, in whom we could already glimpse a sharp sense of humor and the ability to face challenges with irony and courage — traits that still characterize his approach to life today.
We then “simply” carried on our path — sometimes difficult, but also filled with many happy moments, first among them the birth of our second son, and more recently, of our grandchildren.
Since 2014, we have been actively involved in supporting research on the syndrome — on one hand, by following the advice of the doctors who have guided us, and on the other, by taking part in awareness and fundraising initiatives organized by the non-profit Rare Partners. This experience has helped me overcome moments of discouragement and to feel actively involved — however small my contribution may be — in the fight against the disease.
Today, after so many years, I cannot say that my days are always free from anxiety, fears for the present and the future, or from the sadness that A. must face so many daily challenges. But all this does not define nor consume my existence.
As soon as it was possible, I went back to work — in a different field, but one no less rewarding — and found space to nurture other interests.
My son, on the other hand, is now fully an adult and in control of his own life. I don’t believe there is a fixed formula for achieving this. Everyone must find their own way. For me, what proved crucial was not losing myself in him — and leaving space for other meaningful experiences and relationships.