2024-04-17 06:59:53
“The pregnancy was easy, the results of the genetic tests were good. And the birth was easy, everything went so smoothly that the doctors predicted that the baby would be born on November 5. – he was born on November 5,” recalled the mother.
In the first year, the boy grew and developed well, he started walking early – at ten months. He was not in a hurry to speak, but everyone reassured the parents that it was nothing, they just had to wait.
At the age of 2.5 years Jonukas still did not speak, and his mother was not jokingly worried, she started taking him for private consultations with a speech therapist coming to Alytus.
Soon after, the boy hit his head at home. “Dad and grandparents were at home at the time, but no one specifically saw how everything happened. The child, probably wanted to take something from the refrigerator, pushed the chair – and fell on it. There was a carpet on the floor, but when my husband called me, I saw that something was wrong with my son – he was sick, lethargic – and we rushed to the doctor,” said Ilma.
Soon after the trauma, strange features of the child’s behavior became apparent: he became aggressive when he got angry, he would hit the wall, he would squirm, and he would interact with others. The parents turned to a neurologist, who sent them to the “Saulutė” sanatorium in Druskininkai.
There, specialists noticed that the child suffers from epileptic seizures (he moves his hands strangely while sleeping, which is already considered minor seizures), as well as being diagnosed with a mixed developmental disorder and half-spoken autism.
Thus, it remained unclear whether the child was harmed and the disorders were triggered by the blow to the head, or whether it was just a coincidence that they appeared after the trauma.
He is angry that he is not understood
“His first word, which the speech therapist at the “Saulutė” sanatorium taught him to say, was “op” – it was a big celebration for me (other mothers of such children will understand me). And now he speaks very little, even though experts say he should eventually. Sometimes, we urge him to say something, and he points to his Adam’s apple as if something is stuck there,” said the mother.
At the age of six, Jonukas speaks only the basic words: “mama”, “tete”, “meow”. They call grandfather and grandmother simply “a”, brother – “bote”, birds and other flying things, even a kite – “chip chip”, fishing – “shiu”.
The child does not always understand what is said to him, and this leads to many misunderstandings. Sometimes, he tries to explain something to the housemates, to ask for something – and they don’t understand him, and he gets angry because of that. When angry, he sometimes throws things, kicks, spits, hits himself and others. Noise occurs at home, in shops, and when visiting specialists.
“It seems to me that my son’s inappropriate behavior is often caused by the fact that we don’t communicate with each other – if he could express what he wants, he would behave much nicer. Now I get the impression that he sees everyone as his enemy because they don’t understand him. I’m really waiting for him to start talking, but I can’t get it at all,” consoled Ilma.
Feels the negative attitude of others
As if that were not enough, a year ago the boy was diagnosed with atypical pneumonia with mycoplasmas, and after a while – with Lyme disease.
May 1 last year. his mother saw a large animal tick sucked into his head. The doctors took her out in the hospital reception and ordered to observe the child. After 3 weeks, the boy’s temperature rose to 40 degrees, he started shivering – his parents called an ambulance, went to the hospital, where tests confirmed Lyme disease and antibiotics were prescribed.
Now the disease seems to be cured, but it happens that the mother goes somewhere with her son – and he seems to get tired, he wants to rest, but it remains unclear why – whether he was overcome by fatigue due to Lyme disease, or something else is wrong, after all, the child cannot nothing to tell
It is true that Jonukas attends a general education kindergarten, where he has an assistant for him, and once he gets used to it, he does quite well there (there is also a special kindergarten in Alytus, but his mother did not want to send his son there, fearing that he would not try to improve at all). “It’s true, in September our assistant was sick, the teacher had changed – and it was like a change in Jonuk’s head, he was angry at everyone and had to get used to everything all over again – but now everything is fine,” said the mother, who is already afraid of what lies ahead , when the offspring will start attending school.
Ilma is also unhappy about the fact that there are not many services in Alytus suitable for children with an autism spectrum diagnosis. Traveling to classes in Vilnius or Kaunas is too difficult, because a longer trip tires the child. They visit a physiotherapist privately, they started attending the recently arrived Neurooptimal therapy in Alytus, which is said to be very useful for autistic people. They also go to the children’s creativity training studio in Lazdijai, where Jonuk likes it very much.
His mother tried to take him to a regular sports club in Alytus, but they felt unwelcome there.
“Indeed, sometimes we feel the negative attitude of those around us – as if our child is not well-educated, and we are bad parents. Sometimes I would really like to get more public understanding that there are all kinds of children and not everything depends on the efforts of the parents”, said the mother.
I had to climb over myself
What makes Ilma happy in such a troubled life? According to the interviewer, it is very fun when her son learns something new. It’s also fun when a child is happy – for example, he really likes when his older brother comes to visit or when his dad takes him fishing, and if he manages to catch a fish – it’s a real celebration.
“I try not to sink into sadness, because I understand that there are no graves for the living, that we will not fly away with the birds – so we just have to try to do as much as possible for the child so that he improves and becomes as independent as possible,” said Ilma.
This February, my mother made up her mind and founded the Jonas Urbonas charity and support fund, to which indifferent people can donate until May 2. can allocate 1.2 percent personal income tax.
The woman, who is unemployed due to her son’s illness, said that although there is a lack of funds for his education, she did not want to ask for support in the past. “We didn’t even want to tell our relatives that our situation was so bad, only the closest people knew about our worries. It seemed that we would quietly take care of ourselves as best we could – but eventually I got tired of it and felt that, even though I would have to get over myself, it was worth talking about my troubles out loud. Therapies are expensive, maybe the publicity will help and one more euro will fall into the Jonukos fund”, hoped the mother.
How can you contribute to Jonuk’s development, you will find out here.
2024-04-17 06:59:53