Being visually impaired, in all the possible variants, it is not easy at any age.
Retinitis pigmentosa is an unpredictable disease: it is unpredictable when and how intensively it will manifest, it does not matter if you have just learned to walk or if suddenly you find yourself having to change your world, having to rearrange your professional life and relationships.
As I have always been visually impaired, I do not remember a better vision: in my case retinitis pigmentosa has been in a hurry. But, ironically, despite three decades of not quite harmonious coexistence with the disease, I am now almost in the same situation as those who realized at older age to be visually impaired and must find ways to manage this condition. That’s because I grew up without the help of an adult figure, including my parents, to listen to me, to help me cope with my visual limits, facing the small practical everyday problems.
From personal experience I can say that being visually impaired since childhood and grow without any support means having to make a double effort when adults. It makes harder to find your own own place in the world. I would therefore stress the importance of the parental role when the low vision affects children or adolescents. The family can be a significant resource in the growth with a sensory disability, and I believe that, although the situation has improved compared to the years of my childhood, there should be greater attention in this regard.
You know that moment when you switch from an outdoor environment with the shining sun, to a closed space, and it takes a while to get used to a lower brightness? I admit that I find quite annoying the adaptation moment, and the fact that this is affected by my mood, and sometimes is longer than usual, does not help.
Imagine what it means to manage that time when you are five. When you return home from kindergarten, you enter the elevator and all you see is darkness, composed of an unthinkable number of tiny dots. Or when you are six and you go to school every morning, and to reach the classroom you have to keep looking at that phosphorescent backpack in front of you, or the blond hair of another girl. Try to think what it means having to worry about those moments (short, thankfully) every single day, from an early age, without being able to share that concern with an adult able to listen, to comfort and explain.
Yeah, explain. Because if you grow in the silence not only you learn to keep every emotion for yourself (which is not healthy), but you end up asking questions that are not answered, doubting of yourself and feeling different from others.
One day, I was nine years old, I came home and I asked my parents: “Am I afraid of the ball?”, I was asked the same question by another child, who had noticed my defensive attitude when he wanted to throw the ball to me. At that age, with a long history of balls on my face, I began to understand (alone, of course) that I could not do some things as good as others. My state of alarm to the gesture of that child was only natural, given the narrowness of my vision, but still very unaware. Hence the need to understand, that question so direct. But my parents did not say anything, maybe they changed immediately subject. Certainly I received no explanation. And for years I kept asking me questions.
If I were to give advice to parents of a visually impaired child or teenager, thinking back on my experience I would tell them to speak out, but without transmitting fear because a person aware of his limitations from an early age is a person who will get over it, will develop other resources and ask for help without embarrassment if necessary. I’d tell them to deal with him or her with everyday problems, proving that there are no insurmountable difficulties. It is the best gift you could ever give.