Roommate for autistic children: the story of the Rozehnal family

How do you imagine autism? Someone like Forrest Gump, who would have shown signs. Kind, slightly absent-minded, prone to genius. Unfortunately, nothing could be further from the truth, which Nikola (40) and Michal (49) Rozehnal will confirm to you.

They, too, once had no information about autism, did not know how to recognize it, and could not imagine how difficult it is to care for an autistic child. Now they know almost everything about autism spectrum damage (but nothing at all that would help them advance the issue). Their nine-year-old Míša has been diagnosed with moderate-to-low functioning autism since she was two years old.

The family joined the Homesharing pilot project, which is implemented by the association Hope for Full Moon Children and which provides relief to families with autistic children. How can I help you?

Autism is a developmental mental disorder and is part of Autism Spectrum Disorders (ASD). The cause is still uncertain, a combination of genetic predispositions and other factors. It manifests as abnormal social interactions, repetitive behavior patterns, and impaired communication skills.

Parents of children with severe autism are confronted with the level of stress experienced by soldiers during wartime. Unfortunately, this is not an exaggeration, but a scientifically confirmed fact. Support is ongoing.

In two years, everything was normal

Usually, autism is detected around the age of three. It was earlier with little Miša. His mother did not have a pregnancy no difficulty and from the first year its development was standard. Míša was a normal breastfed child, he didn’t cry, and the child you put anywhere won’t find him either:

“But if I take it back, there were signals. But it’s hard to know, every child develops differently. The first thing that highlighted the problem was rejection Accompanying dishes, he caused vomiting. He only wanted breast milk and artificial milk. We thought he couldn’t swallow. Unlike his eldest sons, he wasn’t playing, he was sitting in a stroller on the playground, watching a toy car. This is called non-working play. But I know that now, at the time, it was thought that it would be technically oriented. »

Photo: Rozehnal private archives

Little Míša with her younger brother Tomík. Although it may not be obvious at first glance, the parents know that due to the severity of the damage, their son will never be independent.

Attributed genius is detrimental

Indeed, technical mastery or a propensity for genius is often attributed to people with autism: “People have about distorted ideas about autismwhich is one percent. The combination of autism and genius is terribly damaging. The neighborhood thinks that you have a cute and bright child at home, and he has one of the most serious damage, which has an absolute effect on the coexistence of the family. Autism often requires very demanding care throughout the day, but on the outside it looks like a healthy child who walks, sees, has two healthy arms and two healthy legs, eats…”

His parents decided to undergo psychological examinations with Míša because he did not speak, did not react to strangers and his relatives warned them that he behaved strangely and that this could be a problem.

Typical manifestations

After the tests, it was clear: “The psychologist gave us a gentle but very clear diagnosis. It was terrible and I refused to accept the idea. It was only two years later that I I was able to talk about autism. At first I was looking for what the damage was. It was hopeless, because 95% of typical autistic manifestations were on Míša. But I didn’t want to put up with it.”

Photo: Rozehnal private archives

Autism is a serious and diverse disability – Míša, for example, always has a seizure on the metro at Anděl station, no one knows why. When he is tired, he runs from door to window and shouts. He must always wear a vest with contacts and information indicating that he is autistic – this is such armor

Nevertheless

If a normal child is supposedly late, it is usually enough to give him more attention and he will soon catch up with his peers. It’s different with autism… “Of course, I decided not to let go, to work with Míša and he would catch me. But the more you try, the more there is no answer, l child is not cooperating. We tried speech therapy, therapy, it was very expensive, but it has no effect. The brain is maturing, yes, there must be little progress in understanding. At four years old , Míša did not know what a jacket was, he knows it today and puts it on.”

24 hour service

One of the hardest parts of caring for a child with autism is that you have to be on the alert 24 hours a day. And if you don’t ask for help, one day it just doesn’t work:” You say you can handle it, but suddenly you’re running out of energy. Every kid does sometimes wakes up at two in the morning. But he did it for a year or two. And you can’t keep him calm, he’s noisy, he doesn’t sleep anymore…”

Some things don’t get used to, Rozehnal is convinced of that after all these years. They also refuse to enrich or unite their family in any way: “You have to watch them, not look for causes and culprits like vaccinations, etc., or stick to small advances. We don’t lie to each other, we try to be with normal people, which requires tolerance on their part. »

Photo: Rozehnal private archives

At the age of three, Míša started attending a special kindergarten, now she is in a special school. He needs an assistant, someone has to direct him. You never know when he’ll do a scene where two people aren’t enough for him. He is physically much more mature and stronger than children his age.

Asking for help is not easy

Although they were very scared, they decided to have another child from Rozehnal, and less than three years ago their son Tomík was born. Along with worries that the boy was okay, there was remorse: “It is incredibly difficult to live with the feeling that your sick child is taking the time of everyone in the family, but it is necessary to work with these feelings and find a solution. . The eldest sons went everywhere alone, often with friends. We were in total isolation. When I pick up Míša from school, we are already at home, you can’t go anywhere with him. “

This situation is not sustainable in the long term and Ms Rozehnal finally admitted that she needed help. But most rescue services don’t take children with autism. Care is demanding and there is no money for it.

Homesharing or Even a few hours will help

However, the Rozehnals were looking for a solution, and after seeing the film Les Enfants de la Pleine Lune, they decided to actively participate in the activities of the association. They participated in a pilot project to settle Homesharing in the Czech Republic. They were able to bring their own experience, because at that time their friends offered to help them: “When our friends saw what it was with Míša rychta, they suggested that he borrow it from time to time. time so that we can rest for a while. while. And so we see that it can work.”

The advantage is that the host family, or the person, regularly takes care of the child for the agreed duration and spends several hours together. The parents gain strength for the demanding daily traffic, they can go to the doctor, take care of their siblings and the autistic child acquires new social contacts and new skills: “Sharing ten is usually once every 14 days and for us that’s an endless space. For them, three hours is nothing and for us everything. That’s why we always argue right away, ”they laugh.

Photo: Rozehnal private archives

Rozehnal has a group of friends with whom he goes skiing and cycling. He doesn’t know why he’s there, but the track goes down

Hope for other families

Homesharing has been tested on three families, the second phase is underway and ten families are involved. The sustainability is checked, the facilitators are trained so that nothing can surprise them – they follow ten courses, from general information on autism to specific situations and contact with the family and the autistic person. This is 2-3 months of preparations, when it is necessary to eliminate the possibility of problems on both sides. As they say at Rozehnal, it’s not about babysitting children that you involve in your regular schedule. In addition, each autistic person is different.

How can I help you?

The Full Moon Hope children have three main areas of activity. First there are the films and documentaries that draw attention to the issue of autism, then there is an effort to change legislation on social services and support, and finally the Homesharing project itself. and its development. Members of the association seek financial support from private and public sources.

Photo: Rozehnal private archives

In order for the family to be able to function normally at least partially, they devoted themselves very intensively to Míša and taught her to ride a bicycle.

If you are interested in the story of Míša and her family, watch the film Children of the Full Moon and meet other families with an autistic child.

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