Children
 Slovakia
Project #11901

Andreas: Help for Autistic Families

by Pontis Foundation
At the fire station
At the fire station

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 July to September 2015 we had organized 1 week stay for children up to 10 year old and 5 two-day stays for children and young people with autism.

 

Thanks

In the beginning I would like to thank very much for taking Danko to the day camp. As the state nursery is closed during the summer holidays, it is very difficult to figure up a program and care for our children (we have two boys with autism) for the whole two months. That is why I am very glad that the day camp at the centre for persons with autism Andreas helped me fill the blank days and Danko could experience an adventure and play every day. Danko does not talk but he is most grateful if you take him to the countryside or if he can spend some time with children. Walks in nature organized by the experts from the centre Andreas not only physically exhausted him (every day he fell asleep in the car on the way home), but also made him very happy. I believe that he was also enriched by other activities that he and the children were doing during the day. A proof of this was the fact that Danko was looking forward to going to the centre every morning.

A few words about Danko

Danko is 5.5 years old. He is a very sensitive, perceptive and clever boy. He prefers being in nature. He loves watching the wind blowing, making the trees and bushes dance. It makes him calm down. His biggest hobby is swimming - he can stay in the water for hours. We managed to teach him to swim. Daddy likes to give him a ride on the bike, which is their common hobby. I hope we will manage to improve his gross motor skills so that he can ride a bike alone. He is already able to ride a bike without pedals for a short time, yet he dares only to stable types. Although he has understood how to move his legs, he still cannot keep balance. Throughout the whole summer he dribbled a basketball, which makes me think that he likes basketball. When he is watching the sports news and a player suddenly scores, he is very happy. Who knows, if he understands it. Besides sports he loves objects that are spinning, falling, shining. He is fascinated by them. He falls asleep with a turtle that projects stars and the moon on the wall. He also likes to play with his younger brother.

At home we fight with his character. He is impatient, vain, stubborn, but when he gets the right motivation and is in good mood, he can learn a lot.

Of course, Danko does not speak and yet we have failed to find a suitable form of communication, which is why he started to develop behaviour problems. Danko does not know how to tell us about his feelings and thoughts and that makes him very unhappy. He sometimes even hurts himself (by hitting his fists on his head, hitting his head against the wall or on the floor) or he turns his aggression against us, the parents. We have learned to block him not to hurt himself or the others. Although he is only 5 years old, he is very strong. We must look after him all the time.

We still have a long way to go. We need to improve his concentration, fine motor skills, teach him to communicate, go to the toilet. There is still much to do. But I believe that we will slowly manage everything without stress and Danko will grow into a pleasant companion. For us it is important that he is satisfied and happy.

Appeal

Finally, I would like to ask all donors for their support to make it possible to organize the weekly summer camp again in the future. It has helped us a lot. Maybe next time we can take both our children to the centre Andreas at once. Thank you!

Eye contact
Eye contact
Returning from a walk
Returning from a walk
Reward
Reward
Magda working on PC
Magda working on PC

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 January to June 2015 we had organized eight two-day stays for children with autism. During summer holiday we plan organize one week for children up to 10 year old.

 

Magda’s story continues...

Perhaps it is only in films that a child with autism becomes healthy as if by magic and everybody lives happily ever after... I must admit that in my neighbourhood I have not met with such happy ends even though over the last 26 years I have encountered many families who experience every day what it means to live with ASD – Autism Spectrum Disorders. For instance, I know a mother who has to wear leather gloves even when the temperature is 30 degrees Celsius because her 21-year-old son shows his mood by biting hands. A mother who collapsed and spent a week in hospital when her close ones realized that it was beyond human strength for her to carry alone the burden of care for her autistic daughter. A mother who was being hit by household items or stabbed with a pen by her son in puberty who was bewildered with himself.  Parents who gave up any social contact with others because they spent all their time with their son. A woman who while taking care of her handicapped son for several years also took care of her mother who had suffered a stroke and was mainly bedridden and incontinent. A divorced mother who was under treatment for cancer and dying while being aware that she was leaving her 10-year-old daughter with autism and her younger sister alone and without any relatives. (In this case, human solidarity showed its face and friends of hers who also have an autistic child took the girls in).

Of course we, the parents of autistic children, can also experience feelings of joy, happiness; we rejoice in the achievements of our children and we love them with all our heart. However, we also face problems that everybody sooner or later experiences: middle age crisis, breakups of marriages, infidelity, problems at work, illnesses, problems with the siblings of handicapped children, not mentioning problems concerning the adolescence of children with ASD. In addition, some questions arise: how to take care of our parents when they reach an age at which they are not able to take care of themselves anymore, how to cope with our own mortality, what will happen to my child when I am not there anymore.

My autistic girl has become a grown woman but she has not flown the nest. With her soul and intelligence she always remains a child who in many cases requires constant supervision by another person. Yet we and many other parents are lucky enough in that our autistic child attends some kind of institution offering social services for a certain period during a day. However, each day has 24 hours and they must be filled. But our children are not able to do even regular self-service activities, are not afraid of danger, cannot organise their free time on their own and their interests are very limited. Sooner or later physical or mental illnesses may appear: depression, epilepsy. And suddenly you realize that you are at the beginning again. Suddenly, the usual habits are gone and new ‘survival strategies’ must be chosen.

Mere care for an autistic child is exhausting. But where to find the strength and time for dealing with all the other things that life can bring? And what about the theatre, concerts, sport, hobbies? Is it possible alongside all the rest to sit down and read an interesting book with a clear conscience? Without an inner voice whispering that you should be doing something more useful?

The project ‘For parents without parents’ gives me personally something that I value highly. It gives me free time. I made a promise that I will use it just for myself.  When Magda is in the Andreas centre, I do what I want, not what I have to do. It gives me more energy and I can enjoy time together with my daughter in a good mood.

Before, I could not imagine winter without skiing, summer without swimming in a lake or sweating on a bike. But my daughter was born and as she grew up, I have not even noticed that swimming now means just a few strokes, my skis have been put away for good and my bicycle has rusted forgotten in the corner from the time Magda grew out of her child seat. But I am glad to realize that when I know that Magda is safe – in the care of her tutor at the Andreas centre – we are finally starting to enjoy the ordinary joys of life. After all, you never forget how to ride a bike!

Video of Magda and music therapy:

https://vimeo.com/34365619

Magda and her care taker
Magda and her care taker
Magda
Magda
Palko and his ball
Palko and his ball

Palko has been carrying this ball around the house for the last six years. We bought it on a pump station on our way to Croatia. Always when we go somewhere, Palko leaves it at the door on the radiator and when we come home he takes it and continues carrying it around. In the evening, when he goes to bed, he puts it next to his bed. 

 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 January 2015 to april 2015 we had organized four two-day stays for three grown-up "children" with autism

 

Life writes various stories and our family also has its own. Our family is: me - mother Andrea, father Palo, daughter Petra and son Palko.

 Palko is a young man. He is 21 years old and also an autist. It is meaningless and depressing to think about what it would be like if he was healthy. We have known that he is autistic since he was two years old. Palko doesn’t talk and understands this world only through pictures. Palko is attending the last year of practical school in Bratislava.  

Our day is usually stereotyped. We get up at six in the morning, then breakfast, hygiene, dressing.... We get into the car to be at the school at seven and I continue to my work for 8 hours, in the afternoon I run for Palko to the school and make shopping on the way. When we get home, Palko must eat as the first one. He is the hungry one :-) Afterwards I bath him. Palko can dress to pyjamas by himself and is in bed by five. He listens to his CD and comes to the living room around seven in the evening, sits on the sofa and watches TV with us. Sometimes he checks what is in the fridge, if something was supplied or changed. This is basically every day the same. Sometimes, just to have a change, we stop at grandma’s for coffee on our way home. 

 I would like to sleep enough and rest during the weekend, but somehow that is not possible. Palko throws slippers to my bed at six in the morning, opens my wardrobe and stands there. He waits until I get up and make him breakfast. His father works shifts and spends a lot of time at work. That means that virtually all care of Palko is on me.

 Palko’s sister Petra is 16. She is a very active girl, goes to artistic school, plays the guitar, and loves rafting. She likes people and company. It often strikes me how nice it would be to get out of this stereotype, to go and do some activity in three, to stop worrying at least for a moment whether everything is all right for Palko and won’t distress him. At least once not to burden grandparents with watching over him and enjoy the "freedom in the head" knowing that he is well taken care of.

And I am thankful that thanks to services provided by the Autistic centre Andreas I am able to leave Palko in the centre Andreas for longer than just a few hours or during the night or weekend.
"When I know that Palko is fine, our day is simply nicer and merrier".

Palko likes fast-food very much.
Palko likes fast-food very much.
Snoezelen therapy
Snoezelen therapy
Swimming
Swimming
Artetherapy
Artetherapy
Michal is shuffling his shoes
Michal is shuffling his shoes

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 October 2014 to January 2015 we had organized fourteen two-day stays for eight grown-up "children" with autism

 

Michal needs help

My name is Filip. My younger brother Michal (22 years) suffers from severe autism spectrum disorder combined with physical disability. He needs assistance at all times, mostly from his family members. He needs help with most of the basic daily activities ranging from clothing to brushing his teeth. He is able to move independently, but only in wheelchair or on all four. He is able to walk short distance only with the assistance of another person. Eating, drinking and a bit paradoxically operating electronic devices, such as radios, computers and tablets, are among those activities he is able to do independently.

 

Taking care for Michal is difficult for various reasons. As every person, also Michal is sometimes in a good mood and sometimes in a bad mood. He does not communicate as other people, so it's sometimes difficult to discern the reason of the discontent he shows freely without any constraints. It is often the case that his discontent grows into aggression (luckily usually only verbal aggression). In such moments staying close to him demands a lot of patience and self-control.

 

Michal also likes company and attention of other people, as long as they fulfil his criteria. It is difficult to find activity that would interest him for a longer period of time lately; though it was not a problem in the recent past. He came to like long walks; sometimes he demands them three times a day.

 

I guess it is not necessary to point out the amount of time a man must make to fulfil his demands, even partially. It is understandable that my parents, as well as the rest of the family, welcomed the opportunity to let Michal stay overnight in Autistic centre Andreas few times a month. Combined with daily care of educators and therapists in this centre it is a big help. I am personally convinced that it has also negligible educational effect - even more so given the fact that Michal likes to sleep over there, it is not something he has to be forced into.

Michal at work
Michal at work
Music therapy session
Music therapy session
Michals lunch break
Michals lunch break
Alino
Alino

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 July to October 2014 we had organized fifteen two-day stays for eight grown-up "children" with autism.

 

 Alino's mornings

 Alex is a 20 years old gentleman. He is my son and also a person with autism. Alino doesn't talk (he only uses a few simple words); he is unable to live alone. Alino is my big love; I will protect him no matter what. I live with him alone.

 Ali doesn't like waking up. But he has to, for he needs to go to school, so we fight at least one hour each morning. As soon as I come to wake him up, he barely opens his eyes, says: "I don't go", hides under the duvet and pretends not being in the room. So I start to persuade and motivate him, which is not always easy. When he finally gets out of bed, he moves to the living room, and lies on the sofa - so the whole ritual of persuasion starts anew. He dislikes the TV show "Breakfast with Markíza". The show means that he has to wake up and go to school. So he gets pissed and looks for the remote control (which is well hidden). The game continues:-)

 As if this wasn't enough, Ali sometimes pretends he cannot dress himself, even though he is able to do it independently... Sometimes he secretly hides his lunch or backpack. He laughs when I seek the hidden items. He is a prankster. I have to watch him carefully:-)

 

Alino's paper rolls

 Ali makes small rolls out of paper napkins. We have a big IKEA bag full of the napkins at home. Nobody is allowed to touch them. It's his treasure! He flushes the rolls in the toilet. Before we go to school, he needs to flush at least tree rolls...

And then Alino starts to run. Suddenly he understands that there is no way to avoid it. I must be strict during the whole process. If I let go just once, I wouldn't be able to persuade him ever again. This also is autism...

 

As a different person

 When we come to school, Alino gets happy. He is joyous, gives me a goodbye kiss and merrily hops into his class. The morning ritual at home is not caused by Alino's aversion for school. He just decided that way and unfortunately it is unlikely to change.

It's half past eight in the morning and I go to work. And I am tired... As if I have already worked one shift.

That's why it is a great help for me when an assistant / caretaker from Autistic center Andreas comes to take Alino to school, creates a program for him and just spends time with him. Alino often sleeps in Autistic center and goes to school with an assistant. Alino likes Andreas center and is very obedient there. And I am happy that he feels good and I can rest a bit.

Alino
Alino

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Organization Information

Pontis Foundation

Location: Bratislava, Slovakia - Slovakia
Website: http:/​/​www.pontisfoundation.sk
Project Leader:
Sandra Stasselova
program coordinator for corporate volunteering and pro bono
Bratislava, Slovakia