Ati
The greatest dream of parents who have children with disabilities or special needs is for their child to become an independent adult who can take care of themselves.
Attila was born on April 14, 2014. He was a perfectly healthy baby at birth. However, at 10 days old, he required surgery for intestinal obstruction. He left the hospital healthy. When he turned five months old, he was hospitalized again. Doctors spent three days examining him, trying to determine what was wrong. The doctors decided on another surgery, but it was too late. A 90 cm section of his small intestine had died, causing sepsis. His little heart stopped for 8 minutes. Then it beat again…..for a new life…..which changed the entire family’s life. Currently, he lags behind his peers in cognitive development, motor skills, and speech.
His development is hindered by multiple daily epileptic seizures. He could develop very well, but unfortunately, the seizures don’t really allow this. The daily battle against epilepsy is the hardest. The past 6 years have been about searching for the right medication to stop the epilepsy, constantly looking for solutions and attending various therapies.
We always set small steps as our goals. The first goal was to remove Ati’s PEG tube. This required teaching him to eat and drink, and helping him learn to enjoy it. We succeeded in September 2016. Since then, he eats and drinks well, though still with assistance – helping him do this independently remains one of our goals. The next goal was standing up. Over the years, we attended Dévény therapy, conductive education, Szomato special education, therapeutic horseback riding, and various rehabilitation facilities. We have tried and continue to try every Western medical treatment and alternative therapy available. In October 2017, we achieved this goal too. Since then, Attila has been walking independently.
Then in the summer of 2018, something changed. His seizures became stronger. They exhaust him more. Unfortunately, the past 2 years have been very difficult for us. Because of the seizures, we can barely leave the house. The right medication still hasn’t been found.
In the summer of 2019, a fellow mother posted about going to the SCHOEN Clinic in Vogtareuth, Germany, where they found the right medication for them. We started fundraising and in the summer of 2020, we made it to the Schoen Clinic. This clinic is Europe’s largest epilepsy center and rehabilitation institute. There I experienced what a development center truly focused on building independence for children with disabilities looks like.
We have accepted that Attila is different from healthy children his age. After all, he has experienced something that no one his age has – Ati returned to us from death. I know there’s a reason for this. Our task is to do everything we can for him, to help him grow into the happiest adult possible. And everything he can achieve in life, we must help him accomplish.
The greatest dream of a mother who has a child with disabilities or special needs is for their child to become an independent adult who can take care of themselves.
This is my dream too – for Attila to be able to take care of his basic needs by the time he becomes an adult. Our daughter, who is now 12 years old, helps pull us out of dark moments when we feel discouraged. She believes in MIRACLES, and why shouldn’t she? After all, miracles always exist, and medical science continues to advance.
I imagine Ati’s young life like this: 6 years ago, he started climbing up life’s staircase together with other children his age. Every child moves upward, including Ati, but he just moves a little more slowly. It doesn’t matter how fast we move upward – what matters is that you keep seeing the backs of those ahead of you. As long as you can see their backs, you’re not too far behind. And this is my dream, for Ati to see the backs of his peers throughout his life.
Rólunk
Where Did the Idea Come From?
The idea came to me in Germany, where I wanted to help other parents too. We’re fortunate because my mother can still help when needed. So we can go out for dinner or plan activities with Réka if we want to. But it’s still very difficult. Because there are no nights of uninterrupted sleep, we need to constantly focus on Ati and his seizures. Every day follows the same routine. Wake up, dressing, feeding, giving medication, taking him to kindergarten, then to therapy after lunch. Our five weekdays consist of this same routine.
What about those families who have no help?
Where the mother is with her child 24 hours a day, non-stop.
The Rest Stop helps these parents by providing a chance to rest and focus on themselves. It’s important to give parents time to recharge. That’s why the name “pihenősziget” refers to our goal of offering parents the opportunity to bring their children to us from Friday to Sunday. We would have qualified special education assistants and special education teachers working with us.
Here, professionals will teach children how to help themselves and gradually become self-sufficient adults.
I consider it very important to look not just at the child with disabilities in isolation, but at the whole family – because a person develops best when both parents and siblings are equally balanced. They need to accept the situation they live in, because only then can they effectively fight for change.
Over the past 6 years, I’ve come to understand that tragedy can strike anyone’s life at any time. This is what happened to us.
A family is whole and complete when parents stay together and make the best of their situation. Of course, if parents have unfortunately separated, they need to focus on processing and starting anew, but this requires parents to be well-rested and balanced.
Our rest stop considers the complete, global family, focusing not just on a specific problem but on the entire family unit.
For more information about Ati, the Pihenősziget, and About Us – read more!
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