For parents without parents is a project, that gives parents of children with autism an opportunity to gain new strengths. In Autistic center Andreas we organize short time stays for children with autism. During that time their parents can devote their time and energy to their own hobbies and activities.
Since February to June 2014 we had organized twenty two-day stays for ten grown-up "children" with autism. 20-years old Jakub has canistherapy and music therapy sessions during his stays.
Music that calms down
When Jakub was 8 years old, he visited folklore ensemble with typical children for several weeks. He learned songs and dances there. Sometimes he joined the group, other times he played by himself nearby... Jakub still likes music very much. He has his own iPad, and knows how to use it. He plays songs his brother uploaded for him. Jakub has regular music therapy sessions in Autistic center Andreas. He likes to drum and sing.
Dogs, small ones, bigger and even the biggest, are so interesting to Jakub that he forgets everything else when he meets one. His attention focuses only on them. You have to pay attention, because such meetings might not equally please the dog, or the dog-owner. Once in two weeks Jakub has canistherapy in Autistic center Andreas. He looks forward to meeting black Labrador named Tin-Tin whom he can give various commands. He simply loves animals. A stranger sometimes catches Kubko's attention. He then approaches him and stares intensely into his eyes (not particularly typical for people with autism). This is also not very pleasant for everyone. Trained Tin-Tin does not mind :-)
Jakubko wears diapers during the night. He manages some basic hygienic tasks during the day, but during the night he is unable to wake up a go to the toilet, though he is already twenty years old. But the biggest stress for Jakub is a visit to the dentist. Teeth are nightmares of our family. Jakub's front teeth eventually felt apart. At present moment he wears a denture. Jakub underwent some painful and traumatizing experiences while his teeth were being corrected. Jakub tolerates twice the amount of anesthesia than regular people. Even though there had to be two of us and another two assistants holding him during the surgery.
Christmas tree also in summer
There are many things Jakub, unlike his peers, can't do. He can't blow his nose without assistance, he can't properly wash himself, can't brush his teeth. It is necessary to control him during dressing; otherwise he might put a part of clothing on the reverse. He can't read or write. Even though he learned to count to twenty, he is unable to connect the numbers with real life. He doesn't understand how the days, weeks, months or years pass. He is willing to decorate a Christmas tree in the garden during summer.
Jakub always carries walnuts - in his hands, or in the pockets of his trousers or jacket. They are like talismans for him. He holds at least two in his hands, all the time, even while he sleeps. A nut in his hand means security for him. During his leisure time he likes to twist colorful shoelaces. He twists them with such mastery and speed that they are almost invisible to the observer. Jakub can do it for hours.
In some ways Jakub will forever be like a child. Like a nice, naive, sometimes unpredictable boy, who knows no lie, treachery, human evil, or hatred. Jakub is a man of goodwill. A big child someone has to watch all the time, guard his safety and protect his world. We are forced to enter his private sphere all the time, even though it is not quite appropriate at the age of twenty. We try to come closer to each other to understand each of us better and better. We try to read in his face, sometimes happy and laughing, but at other times sad, desperate, or tense, every day. All of us - mother, father, and brother.
Since the beginning of November 2013 till the end of February 2014 we organized 12 two-day stays for 10 grown-up children with autism. Clients took part in music therapy and art therapy with professional staff. Magda stayed in our center for 6 days with her personal assistant.
There is no other Magda
Magda is an only child. Though being 24, she still looks like a teenage girl. She started walking late, at the age of 21 months, but since then she expresses very active temperament. She is always in motion; long walks or swimming sessions are necessary to get her tired. She needs various levels of assistance with ordinary routine activities like dressing, personal hygiene, and eating. She is almost completely unable to spend time alone, she fails to find meaningful activities and the repertoire of her activities is quite limited. Magda is unable to perceive danger and needs constant surveillance. She loves to talk. Her vocabulary is quite rich, but her use of speech is stereotypical.
Little Price and books
As well as Exupéry's Little Prince, Magda also demands answers to questions she asked. She poses many questions and demands whole-sentence answers. She likes books the best. Though she can't read, she loves to hear somebody else reading. It's not important whether they are rhymes, fairy tales or more complex stories, like Pippi Longstocking. She has amazing memory, she knows the books by heart and is able to use excerpts from them functionally in communication. Books always keep her company. She takes them when she goes for walks, she has them with her while traveling; she loves to visit bookstores and secondhand bookshops. If it's rainy and she can't go out, she spends most of the day reading, i.e. listening how someone reads to her. It's a form of communication for her. Magda is not satisfied with reproduced stories; she demands the company of a person. She loves to turn the pages. She knows exactly when.
Magda is very nice, she loves to communicate and sing. She has mutual heartwarming relationship with her parents. She dislikes when they attend to other activities. That is when the temper tantrums occur. When her mother cooks, Magda takes knifes and lifts the lids, which poses a threat for her. She hates mopping the floor and has a temper tantrum when she sees a mop in the corner. When Magda is around, you can't pay attention to anything else, just her.
This is how the days pass, irrelevant whether it's a workday, a holiday or a vacation. Taking care of Magda is sometimes beyond human strength, because she demands attention almost all the time. Two-day stays in Autistic center Andreas help Magda's parents find time for themselves, their interests, or to clean their apartment or simply rest.
For parents without parents is a project, that gives parents of children with autism an opportunity to gain new strengths. Since we launched of the project (august 2010) we have realized 9 two-day and 3 week stays.
One of the stay was realized for Edin. Edin (21 years) has a mother, a sister and a father who love him even though he is "different". When he was younger, he set the apartment on fire. If it weren’t for fast intervention of the fire brigade, the apartment would burn to the ground, along with other apartments in the building. It is a miracle that no one was hurt on that occasion. And Edin didn't even understand what was happening.
Edin's sister had his name tattooed on her neck four years ago. She did it right after she moved out of shared household. They had lived together since early years and as she says their relationship grows stronger as they mature. The tattoo on her neck reminds her of their relationship.
Edin's parents separated three years ago. The time of divorce was difficult. Edin's behavior changed, more aggressive attacks appeared.
His mother who previously worked only occasionally had to start supporting herself and Edin. In the present she works in a hair studio.
She moved them to the country, which helps Edin a lot. He goes to bed only after all the hens are locked up in the hen house. He loves animals and would like to ride a horse. A big black poodle Biba lived in their household. Edin used to lie on her and she always respected that. They had to put her to sleep two months ago. Edin gradually realized it, as he couldn't find her at home, in his father's place, his sister's place or his grand parents' place. "Biba is not," said Edin as a farewell to her. He didn't shed a tear, but he won't be looking for her anymore.
Two-day stays in Andreas help Edin's mother, who became his custodian after the divorce. During her free days she can work in the hair studio and build a relationship with her new partner and her new rural life.
Your help will enable us to make the help even more intensive. We would like to provide help to families at least 4 times a month.
Only some children with autism that are under the intensive therapy can achieve an independent life as an adult. For most parents, this means continuous care for their children 24 hours a day, 7 days a week. Autistic Center Andreas provides since 2001 a day care for children and youth with autism.
In 2011, Andreas decided to open a full-time / weekend care for their clients. Since these kinds and youth need special services and parents cannot leave them by themselves or with friends / relatives without special expertise, they do not have any free time to relax.
Andreas offers them opportunity to look after the kids during weekend and parents can get strength and energy.
Within today Andreas realized 7 weekend stays for Jakub, Edina, Alina and Magda. Three week stay was organized for Misko and Edina. Social therapist worked 653 hours.
This professional nursing, however, involves much more than just surveillance. It provides a number of individual and collective activities that encourage and promote the independence of autistic children. Clients took part in working therapy focused on their self-activity and manual skills (cleaning paths in garden, ironing using iron robot, collecting PET bottles, cutlery sorting, simple meal preparation, …), art therapy and physical therapy (swimming).
An hour wage of social therapist is 3 € (4 USD) – if you will donate 32 USD, he can provide an autistic client with special services for 1 day.
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