History

- Tell us about your pregnancy. Did it stand out in any way?

- Atas was a much-awaited child. We haven't told anyone, but our first pregnancy ended in miscarriage, so we didn't even tell anyone the news until we were 6 months pregnant. I did not want to experience the first pregnancy. The pregnancy was with toxicosis, but at the very end I felt I had a lot of strength. I went to yoga and planned to have a natural birth. The day before the due date, I missed fetal movements, the next day when I went for a check-up, I was rushed to the operating room. At that time, I did not even allow any bad thoughts, although the fear of the doctors for the life of the baby did not worry me. However, after the caesarean, we all calmed down, because Atas was born without suffocation, he did not need to be resuscitated. Everything seemed perfect until 6 months. To this day, I don't know the real reason why the movements have decreased. The doctor only mentioned that the umbilical cord itself was entwined around itself, maybe this had an effect on the amount of oxygen. I also have some sort of memory from mid-pregnancy when I got a positive HIV result from the lab during a routine blood test. The attending physician confirmed that it couldn't really be a mistake... But it was. And to give such a diagnosis to the expectant... Not everyone would be able to withstand it. At that time, I experienced a lot of stress because it was not clear where my research results came from. I was nervous for a long time, which I have no doubt could also harm the fetus.

- Did you notice anything unusual during your pregnancy or after Atas was born?

- When Ati was born, around 2-3 months, I noticed only one exception - the toes of the left foot were smaller than the right. And the right hand moves more. But I didn't pay attention to it, it seemed nothing terrible. The doctors didn't see anything wrong either.

- Do you remember the day you heard Atas diagnosis? What was your own reaction? Maybe you are calm, maybe you are scared, maybe denial has come?

- I remember that when we started going to the doctors, when Atas started crawling strangely on one right side, it was already very disturbing. But at the polyclinic, no one even mentioned the possible cerebral palsy (CP). He prescribed exercise and seemed to bide his time without giving a diagnosis, although the situation did not improve at all as the months passed. Around the 7th month, after I sent the video of Atas strange crawling to the physiotherapist, I got the appropriate name of the diagnosis, which was later confirmed in Santariškės. There were definitely tears at the time. It's a pity for the child and the uncertainty of what's next, whether Atas will walk, what his development will be... We didn't know anything about CP.

- Explain Atas diagnosis in more detail?

- Atas is diagnosed with left-sided hemiplegic cerebral palsy. Thank God it's a light enough form, Atas can move, he's a smart kid.

- Atas development is normal. Is it difficult for him when his physical capabilities do not match his growing wants and needs?

- Today, Atas and his peers are probably still too young to single him out somehow. However, my son already says that he doesn't know how to do one or another exercise during the games in the kindergarten, he doesn't catch up with the children, which makes him very sad. He feels left out, or maybe he himself survives this way by withdrawing from his peers and observing everything from a distance. There are days when, say, you don't want to wear a leg brace because other kids don't. But for now, everyone is friendly in the kindergarten. It's true that thinking about the upcoming school is a bit unsettling because of bullying among children, they especially quickly notice different peers and are very merciless. But we, as parents, are concerned about it now, we want to do everything possible now so that our son differs as little as possible from a normal child in the future. The psychological factor, the reaction to the environment, is extremely important. First of all, the ability to accept yourself, to turn your disability into a strength. That's what we try to teach.

- What physically can Atas do and what he can't?

- Atas fine and gross motor skills are lagging behind. The left arm and leg are very weak, the arms and legs are shorter in length and size, the muscles are tight and never relax. Still learning to jump with both feet. He had difficulty grasping things with his fingers. Although he uses his left hand, but very minimally, he cannot hold a cup. After learning to do everything on the right side, it's just so much easier for him. Atas gets tired faster. Although he is already 5 years old, he usually ends his long walks in a stroller. However, he likes to ride a bicycle with fixed wheels.

- Tell us about Atas personality. What does he like? What is his character? What doesn't Atas like?

- Atas is a cheerful and capable child. Like everyone, he likes the usual activities of his peers, he is interested in machines. Least favorite thing to do every day is working out with trainers or at home with parents. Here one has to resort to various promises and measures of seduction with sweets. Many tears were shed because Atas has been practicing since he was a baby. At the moment, there are fewer arguments, we try to explain that sports, muscle stretching will accompany him throughout his life. Otherwise, his arm and leg will shrink completely.

- What treatments and enhancements have you already engaged in, how much did it cost and have you seen any progress?

- Not counting Ata's daily exercises at physiotherapists and ergotherapists and foreign rehabilitations, we try to exercise and massage Ata at home. We have prepared various tools for this. As the child grows, the muscles do not have time to stretch, as a result of which it is not possible to prevent contractions, but growth spurts cannot be stopped. I had to try several times to relax the muscles with botulinum toxin injections, but the effect was very short-lived and did not give the desired result. A year ago, Atas underwent a complex spinal operation, during which spasticity in his left leg was removed. After her, the child's leg loosened more at the ankle. As for the prices, they are high everywhere. For example, one hour-long physiotherapist session costs from 40 euros. It seems that although there are quite a few state-reimbursed procedures, getting the right time or a good specialist often becomes a challenge. Strategizing who can take Atas and pick him up every day is a daily routine for us, which is marked on the calendar several months in advance. We sacrifice our free time and hobbies for this. Progress can be seen by specialists who work with Ata constantly. As parents, we may not even notice it, we see black more often than white. At the moment, the regression is most visible in the hand, I would like to help him loosen it.

- Tell me about your family?

- We are really a simple family of 4 people. Atas has a younger sister who keeps him from getting bored. We work standard jobs and lately we have been devoting all our time and finances to helping our son get stronger and prevent the disease from progressing. We can say that we haven't had a vacation since Atas was born. Most often, foreign rehabilitations become our holidays.

- It seems that your life has changed a lot after your son's diagnosis?

- Yes, I think it applies to everyone. Life changes when you become a parent. And those who have children with special needs, even more so. The routine of life changes, not only work, home and hobbies. You have to sacrifice your and your family's free time to be able to take your child to the procedures. And in them to motivate and encourage the child so that only he works. Do you donate the planned finances to cover a loan for a child's surgery... Become an expert in logistics, doctors, specialists search. All parents who try to help a sick child face this. But all this pushes us to move forward. After all, if you don't do anything, you can't know how it will be until you try.

Author: Fausta Marija Leščiauskaitė

Many thanks to Fausta Marija for the article on the delfi.lt portal. This article is us!

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