“The Church should help our children to remedy the State’s shortcomings.” Carmela is the mother of Eliana, born with an autism spectrum disorder. The doctors call it Rett syndrome. It wasn’t’ until their daughter turned 2 that they realized her condition: “That’s when major problems emerged, but we had to wait 10 years for a diagnosis. We grouped around in the dark for a very long time. To date there is no cure to this disease, marked by a wide array of symptoms. Ultimately, knowing its name makes no difference. It’s best to focus on treating the symptoms.”
What do the parents of autistic children expect from the Church?
To give a major contribution to this area. The State has also confined the Assistance to the Seriously Disabled Bill to the private sphere.” I hope the Church will bridge this gap, not only economically, but also in terms of relations. However wealthy I might be, the thought of leaving Eliana at home with a caregiver is deeply saddening. She would be left alone.
The Christian community could welcome her; the Church could set up appropriate structures.
In the meantime, how was she received in the parish?
There’s a church near our home but Eliana doesn’t want to go there. A group of scouts meet every Sunday, and I asked if we could join them but they made it clear that she’s wasn’t welcomed. I eventually found a wonderful church, where she did her First Communion and Confirmation. It’s the Saints Martyrs of Uganda church in Rome. They offered us a very warm welcome. In this church nobody stares at her and she doesn’t start screaming. Nowhere did we find the same degree of attention and care. We shared many experiences with them, including a summer camp. And it even prompted positive thoughts for the future.
How was the experience of the Sacraments?
First Communion and Confirmation were both positive experiences. Last year’s Palm Sunday service was very long. At a certain point she indicated the cross on the table we use to communicate to show me at what point we were. Explaining Catechism to Eliana is not easy. But I know she understands.
What happened when you learned about Eliana’s disease?
It was a difficult moment, we didn’t know what to do. The first stage was marked by deep physical suffering. Eliana had stomach disorders, recurring otitis, sleeping problems, she wouldn’t eat and had food allergies. Our main concern was her physical well-being. That’s when we had to learn to understand her requests: she said “mummy”, and then she stopped talking. Now she also says “daddy”, and makes a specific sound to call her sister.
How is the relationship between the two sisters?
Beautiful. Anna Maria saw her sister immediately and Eliana held her in her arms as soon as we came home.
The way in which Anna Maria and her sister communicate is extraordinary.
She understands many things about Eliana that I fail to comprehend.
Are there “normal” days in the family?
Such days are rare, but when they occur they make us happy. Every morning we wash and dress Eliana, and we accompany her to the bus that brings her to school. She attends secondary school, 5-hour classes a day instead of 6 because it tires her. After lunch she does physical activity like basket and swimming; psychomotricity with a home therapist twice a week, along with specific yoga courses. One afternoon a week we attend post-Confirmation meetings in the parish. It’s important for her to have a busy schedule, especially to be with other people and interact.
Who covers assistance costs?
National healthcare pays part of her rehabilitation activities until she turns 18.
But for the State, once they come of age autistic youths have no more needs.
Eliana was assisted by a state-funded centre, and luckily the program is still ongoing. Assistance was badly-organized already during her early childhood years, but when she turned 18 she was left with none. National health services don’t envisage neurological support that could help all those with Eliana’s health condition.
Does the family carry all the burden?
All services are provided by private healthcare, which requires high economic resources. It’s also a problem of choices. Nobody cares about our youths. We are assisted by the Bollea Institute, that still resembles national healthcare service. But the structure is closing down.
What about school?
It has always been a struggle. It’s easier to look after someone who can speak and understand everything even if that person is disabled. It’s much harder when faced with a child who can’t communicate. She has problems walking, although she fortunately can use her hands. She manages to eat by herself but she cannot write. However, the greatest difficulty is making herself understood: youths want to be with their peers, but they need the tools to communicate.