«My brother is missing a part of his head»
It was really mean when he got into trouble because of this fifth-grader, says Noè. He made fun of his brother Elia, saying that he was disabled. He then punched him in the face. The other one then told the teacher. «And who got in trouble? Me!» Noè gets angry. «Retarded! He doesn't even know what it means to be disabled."
Noè, 10, knows exactly what it means. For him and his seven-year-old brother Mael, life with Elia is part of everyday life. The boys' twelve-year-old brother has cri-du-chat syndrome. Babies and toddlers with this rare disorder cry like cats, hence the name. Elia no longer "meows», but speaks with the very high-pitched voice typical of those affected. The small head, weak muscles, developmental delay and psychomotor impairments are also characteristic.
When the carer is there, Noè and Mael can play in peace
It's a quiet Wednesday afternoon in the Giorgi family home in Trimbach SO. Noè is concentrating on putting together his beloved Star Wars Lego as he recounts the anecdote about the fifth-grader.
The door to his room is open because Denise is here today to look after Elia. His carer comes every Wednesday afternoon when there is no school at the special needs school that Elia attends. Then Noè and Mael can play in peace, or have their mum to themselves. Hours like these are worth their weight in gold for Tanja Giorgi. «We try not to let Elia become the centre of the family too much. But of course that doesn't always work,» says the mother of the three boys. Most siblings of children with disabilities find that their parents spend more time with their disabled sibling than with them in everyday life, but are not unhappy about it. This is the conclusion reached by German psychologist Heinrich Tröster in an analysis of various studies at the University of Heidelberg.
This diagnosis doesn't turn our son off. We have always given him the time he needed to develop.
Duri's mother
Sometimes she has the feeling that her little brother is always more important than her, says Antonia. The eleven-year-old sits with her legs crossed on the sofa in the living room at home in Sent in the Engadin and watches seven-year-old Duri attentively. The little blond boy sweeps through the room like a whirlwind. Sometimes he's leafing through a picture book, sometimes he's banging on the drums, sometimes he's wildly screeching and flailing at his sister on the sofa. Duri has a disorder from the autism spectrum and one on the eighth chromosome.
He and his family received this diagnosis just over a year and a half ago. «He always showed very typical autistic behaviour, but then he didn't,» says his mother Birgit Rathmer. The diagnosis brings relief to her and her husband Joachim Wurster because the therapies that Duri was given from the outset in consultation with specialists can now be specified. «Otherwise it wouldn't have been so important to us. This diagnosis doesn't turn our son off. We always gave him the time he needed to develop,» says Duri's mum. «And therapies such as occupational or music therapy in particular have shown early success.»
In Trimbach, Noè has now finished assembling his Lego. «Come on, let's play Uno,» says Tanja Giorgi. «Are you playing too, Eli?» Eli looks up from his book about motorbikes in annoyance. His mum has torn him out of his Wednesday routine with his carer. He doesn't like that at all. Nevertheless, he squats down on the floor next to her and peers at her Uno cards. «Oh man, you can't really play with Elia,» says Noè after a while, slightly annoyed. One of the reasons for this is that the twelve-year-old can hardly concentrate on several people.
«He has his own game for each family member, which he only plays with them,» explains Tanja Giorgi. Noè grins. «Sometimes I don't feel like it either, but Elia is actually a lot of fun.» Sometimes he is the doctor «Doctor Fever Leg» in these games, or he brings his mum the menu as a waiter. Not that Elia often visits restaurants.
«There are things that aren't possible with him,» explains his mum. «Visits, holidays, the Chilbi. That would be too much for Elia. The fact that we can never be a family of five sometimes makes me a bit sad.» Elia is in the respite home every other weekend and also spends part of his holidays there. «I find it awful having to leave him in someone else's care so often,» says Tanja Giorgi. «But I want to give Noè and Mael - and us parents too - a bit of normality from time to time. Even though sometimes it almost tears my heart apart when Elia cries because he has to leave. And Noè often suffers too.»
It has been scientifically proven that siblings of children with disabilities are more empathetic than others (see interview below). What's more, they often take on responsibility from an early age.
According to the study analysis by Heinrich Tröster, 38 per cent of them take on caring tasks, compared to only 13 per cent in families without disabled children. At the age of four, Antonia was already looking after her middle brother Jon Elias, now nine, when she herself was absorbed by Duri, says Birgit Rathmer. The family has gone outside and is enjoying the sunny Sunday in the Engadin in the backyard.
Duri races down the slope on his toy tractor, while Antonia runs alongside him with her dog Mia. Jon Elias has a football match in the neighbouring village. This suits him just fine, because he doesn't want to talk about his brother, even though the two are very close.
Elia is in the respite home every other weekend
«It's important that Antonia and Jon know that they don't have to be considerate of Duri at all times,» says their mum. «They're allowed to send him away if he's being a nuisance. Or scold him if he breaks something.» She is careful to make her eldest realise that she doesn't have to take on too much responsibility. «I'm Duri's mum, not her!» Birgit Rathmer also wants to do justice to her two non-handicapped children.
However, they often don't see it that narrowly. When the youngest was small, he often screamed for hours on end. «At some point I thought, I can't do that, I have to look after the other two as well,» says Birgit Rathmer. She let Duri cry and began to tell Antonia and Jon Elias a story. Antonia was completely irritated and said: «Mum, Duri is crying. Can't you hear that?». In the meantime, things have settled down so that Duri goes to play with someone on Wednesday afternoons and her mum then makes time for Antonia and Jon. Or one of the parents spends a weekend alone with one of the children. For example, Joachim Wurster recently spent a few days in Vienna with his older son. «It works well for us,» says the father.
In Trimbach, too, they have decided to enjoy a little more sunshine. Noè has arranged to meet up with a school friend, Mael is riding around on his scooter. Elia is watching the farmer who lives round the corner mow. When it's time to go home, Elia doesn't feel like it at all. The twelve-year-old throws himself on the floor, screaming, bites his lower lip and bleeds. «Yes, sometimes I wish things were different,» admits Tanja Giorgi. «It would all be so much easier. Whether it would be better, I don't know.»
Elia eats a snail
As soon as she and carer Denise have managed to manoeuvre her son towards home, he turns around in a flash and runs back to the meadow. Elia pays no attention to cars. He trips and falls. Elia puts everything in his mouth. Chews his T-shirt, eats a snail. Elia will always be a small child in the body of a big child, a teenager, an adult. «He's missing a part of his head,» says Mael when asked what's wrong with his brother. And what else is Elijah like? «Elijah is different. But Elijah is good.» And which of his brothers annoys him more? The answer comes like a shot from a pistol: «Noè!"
According to Heinrich Tröster, children view their relationship with a disabled sibling more positively than with one without a disability. This may be partly due to the fact that negative feelings towards them are often associated with a guilty conscience. Often, however, such siblings actually have a close bond like a whirlwind and even develop their own language. "Playground,» says Duri. It's one of the few words he can say. Otherwise, the seven-year-old communicates in sign language, but understands everything - in German and Romansh. «Duri grows slower on the inside than on the outside,» explains Antonia. The family make their way to the playground.
Do they sometimes wish they were completely normal? Joachim Wurster shrugs his shoulders. «We don't know any different. We have what we have, and that's a lot. We are normal after all!»
PROCAP GUIDE FOR PARENTS
The 5th revised and updated edition (2015) of the Procap guide «What is my child entitled to?» has been published as a social insurance guide for parents of children with disabilities and can be ordered from Procapat a price of CHF 34 (members CHF 29).
The clearly laid out guide illustrates the individual topics with concrete examples from Procap's practical experience and summarises the most important suggestions in tips. In addition to an introductory description of disability insurance, its general tasks and benefits, the specific types of benefits for minors, such as medical, educational and occupational measures, are also presented. These include entitlements to helplessness compensation, aids, IV pensions or intensive care supplements. Existing claims against other insurances (health insurance, accident insurance or pension fund) are also dealt with and supplemented with explanations of the procedure. The guide also takes into account the assistance contribution and the new adult protection law.
