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– My husband’s and my husband’s biggest mistake was that we cared too much for our son. Now we are worried that we will die before him, and he will be completely left without any care – says the mother of 30-year-old Krzysia, born with Down syndrome and struggling with autism.
- The son of Małgorzata from Kraków also had four-limb cerebral palsy, he was completely flaccid
- As a child, Krzyś did not speak, and around the age of 4 it turned out that he was deaf
- Her husband devoted himself to his professional work: “Someone had to earn a living, rent, drugs and hearing aids, which my son was still destroying. As a person with autism, he had attacks of aggression, especially in adolescence “
- Mrs. Małgorzata: “I do not know what will happen to Krzyś when I leave this world. Maybe I’ll find out when I die “
- You can find more similar stories on the TvoiLokony home page
Ms Małgorzata from Krakow is very upset when she hears on television the assurances of Marlena Maląg, the minister of family, labor and social policy, who during protests over the judgments of the judges of the Constitutional Tribunal made declarations that mothers of children with disabilities will be taken care of.
– I do not believe any politicians’ assurances, in my opinion they never tell the truth in this matter. My son is 30 years old today, and during that time I could only count on myself or on institutions that would never have existed if not for the involvement of parents of children with autism – explains the 65-year-old.
Down syndrome and cerebral palsy. “What to do with your son next?”
Krzyś was born prematurely, in the seventh month of pregnancy. It weighed just over a kilo.
– He was diagnosed with Down’s syndrome right away, but it wasn’t the biggest problem. Worse, because he was also diagnosed with quadriplegia, he was flaccid like jelly. Autism was diagnosed much later – says Małgorzata and adds that this is not the end of her son’s ailments.
– He cannot hear or speak, and in addition, during his next hospital stay, he caught HCV, i.e. hepatitis C.
The woman has bad memories of the delivery room.
– To my question: “What should I do with my son next, how to rehabilitate him”, I heard the doctor’s bizarre reply: “if you find out something, please write it down on a piece of paper and we will pin it on our cork board”.
Autistic, deaf, speechless
About the Vojta rehabilitation method, intended for the treatment of children who suffered damage to the central nervous system as a result of premature birth, Ms Małgorzata found out by accident from a neighbor in the Assistant’s Home in Krakow, who gave birth to a toddler with muscle contractures.
– The rehabilitation was long and painful, and although Vojta’s methods were considered controversial at the time, I am convinced that only thanks to special pressure exercises, the son regained his motor functions. He did not speak. And around the age of 4, it turned out that he did not hear. That’s why hearing aids were needed. When he started showing autistic behavior, I ran with him on hippotherapy. Of course, I paid for everything myself – remembers my mother.
She was forced to quit her professional career because her son required – and still requires – XNUMX-hour care.
- “If I had known how sick my child would be, I would not have decided to be born”
Hearing aids and other expenses
– I was not professionally active for many years. But at some point I found that I had to do something or else I would go crazy. I became an insurance agent because such a job did not restrict me with rigid working hours. It gave a small income, but it allowed, for example, to change your thoughts, detach yourself – analyzes Mrs. Małgorzata.
Today he has a pension of PLN 1400.
– When was I supposed to work out a bigger one? My husband devoted himself entirely to his professional work, someone had to earn a living, rent, drugs and hearing aids, which his son was still destroying. As a person with autism, he had bouts of aggression, especially in adolescence. Then he threw them against the wall, bit and destroyed them. After all, five years ago, he refused to insert the camera, he doesn’t want to use it.
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Krzyś does not understand what is happening
Ms Małgorzata had so much system support that she went with her son for a rehabilitation program several times.
– It’s absolutely not that the state covers 100 percent of the costs, I had to spend my stay out of my own pocket. And I regret that I used it, because it did not do much for my son, and the feeling of loneliness was overwhelming – he explains.
Krzys’ mother was very happy with the classes at the Environmental Home of Mutual Aid.
– However, its existence would not have been possible had it not been for the efforts of the parents working in the Krakow branch of the National Autistic Society – emphasizes the woman.
Unfortunately, due to the pandemic, the facility is inaccessible to residents.
– Krzys does not understand what is happening, why his day looks different than usual. This is important for people with autism and they feel fantastic there. Their day is divided into cycles: they exercise, have art classes, go for a walk, eat meals together. In the day-room they stay in a peer group and even though they do not communicate with each other, it is an extremely valuable experience for them – sums up Małgorzata.
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A home for adults with autism?
As part of the state aid, Krzyś also receives a pension.
– It’s PLN 1300. He can’t manage this money, so I try to save some of the money in order to have a resource in an emergency. I am also thinking of investing in the construction of a house for autistic charges – says Małgorzata and explains that parents from the Krakow association of parents of autistic children asked the city authorities to provide them with land for the construction of such a center.
– The city is favorable to our idea, but the problem is to maintain the facility in the future, pay for the staff and the media. This could be financed by a solidarity fund. But at the moment it seems impossible. It is a pity, because the parents of sick children would experience at least a bit of peace, the pupils happy, finally free from their parents – she laments.
For the baby to die sooner
And he confides: – I am 65 years old, I know mothers who are already in their seventy. They simply do not have the strength to look after their disabled sons and daughters. What do these women want? For their child to die sooner. Because in Poland there is nothing to do with adults with autism. There is simply no such institution. A person with autism is not suitable for an ordinary nursing home. There, the charges are more independent, they do not require a guardian 24 hours a day.
He also considers it unfair that pensions are promised to mothers who have given birth to four children.
– Nobody remembers that these children become independent with time, start their own families, leave the house. And mothers do not take care of them until death. I don’t know what will happen to Krzysiek when my husband and I die. Maybe I’ll find out when I die – Małgorzata finishes bitterly.
* At the request of the heroine of the text, her name and the name of her son were changed
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