Host families, who would relieve them in what is called shared accommodation, could help. Especially at a time when various hospitals are often difficult to access.
“Even though my daughter and I are with her, we can no longer take care of her when needed. We are very exhausted,” described one of the mothers, whose child has a neurodevelopmental disability, for the Children of the Full Moon association. “Watching for a week or a weekend would be a dream come true,” she added.
Daniela from southern Bohemia, whose son (11) has an autism spectrum disorder, has a similar experience. Her life outside the family was reduced to a minimum when she had coffee with a friend a few times over a few years.
“Very often these parents do not have the time or the energy to contact the environment,” confirms Milan Černý, director of a special kindergarten and primary school from Prague to Zápolí, which takes care of children with autism. “Parent exhaustion can sometimes cause them to crumble,” he said.
Its establishment, run by the deaconry of the Evangelical Church of the Czech Brethren, has to be rejected each month by several families who wish to place their offspring there for the purpose of education. That is why he is now organizing a fund for the reconstruction of the school so that it can expand its capacity. However, according to him, the school can help families mainly in teaching eight to one and then in groups.
“Then there is a period of weekends or holidays, when they also need relief,” Černý added. Daily or residential social services can help these parents, but there is a long-term shortage. That’s why we offer homesharing, in which volunteers help children in acute care.
water against animals
Among them is the family of Michaela Vodičková from the Prague-East district, who heard about this possibility two years ago and joined the pilot program. “On the one hand, we wanted to help the parents of these children so that the family is not isolated from the rest of society. In addition, we have our own adult children, we do not have grandchildren yet and I wanted to have contact with the children,” she said.
This was followed by training involving training in various situations the caring family may find themselves in, or lectures on Autism Spectrum Disorders. “These children are very sensitive and can react to different situations for us in unexpected ways,” Michaela explained. She and her husband became fully involved in the spring of last year. They take care of Lucia, fourteen, every other weekend.
“Of course, at first her mother was worried that everything would be fine and Lucinka didn’t have a seizure. But she’s a happy, contented child who has no problem with people,” Michaela said.
The only problem was that Lucie was afraid of animals, and her family had two cats and a dog. “It just came to our knowledge at that time. But thanks to the fact that we have a small pool in the garden and Lucinka likes to swim a lot, in the end the water overcame the fear of animals,” added Michaela Since then, Lucie has gotten used to the animals and even petted the dog for the first time.
The pilot project that Michaela participated in, but is now coming to an end and the project is growing. The nine participating organizations are looking for dozens of families to participate in their assistance.
They are looking for more
“After only two years, we saw that it brings the families they were waiting for,” explained Kateřina Kotasová of the Abakus endowment fund, which is involved in the project.
The host does not need to have any special skills, above all he needs patience. “I think that not being an expert can be an advantage, a layman approaches a child with nature and offers him how he lives, his house, himself,” said Klára Šrůtková, head of homesharing at the organization Full MoonChildren. Details about the project and how to get involved are available at www.homesharing.cz.
Roommates aren’t the only way to help families with autistic children. Day hospitals or residential facilities could also help. But there is a lack. And not just for children, but also for adults with autism spectrum disorders. According to the Prague Diakonia ČCE, for example, Ms. Blanka, the mother of Marketa, now an adult, knows about it. She contacted 27 establishments in Prague and the Central Bohemian region to ask if she would accept her daughter. It was rejected twenty-seven times.
“According to statistics from the Ministry of Labor and Social Affairs, there is a shortage of residential social services for people with autism. Especially where the child has a more severe form of autism, families live under a grueling regime without hope of change,” says Ivo Mareš, spokesperson for the Diakonia of the Evangelical Church of the Czech Brethren.
Therefore, Diakonie is rebuilding the Prague school for autistic children in Zápolí, whose capacity will increase from 28 to 80 children when completed. Those who want to help with an expensive project can find information at www.skolapraha.diakonie.cz.