„I am afraid to think about how my daughter will cope if I am no longer here”
In families where there are children with disabilities, the chances of getting a divorce is higher. Single parent families are more likely to become poor and a disabled child makes the daily life even harder than of other single parent families. These parents have more difficulties in finding work, arranging the daily routine or finding a partner.
During our “Single or Unique” program, we met Anna, who talked about the difficulties of raising a disabled child. Later, Barbara told her story about their daily lives with her disabled daughter. Now, it is Júlia, who will share her experiences.
“My daughter, Panna, was born prematurely which caused abnormalities of the locomotor system. Her hands and legs were not able to hold her body which lead to her learning to crawl and walk late. Thanks to the intervention and Pető Institution, her movement is more coordinated now – even if it is a little uneven compared to her peers.” says Júlia.
However, sadly, later it turned out that in Panna’s case there was more to it than that.
“In her early school days, around 10-12 years, Panna had to realise that she could not keep up with her classmates and it started to frustrate her. Today she is recognised as having intellectual disability, luckily hers is a less serious case. She goes to a special school where she found her place, enjoys studying and develops very well in her on rhythm.”
Júlia’s situation is made even harder by the fact that she has been raising her daughter alone ever since Panna was one year old. Panna’s father was rarely connecting them in the first one or two years, however the situation got better since, he spends every second Saturday with his daughter and once a week he picks up Panna from school. Júlia is also very lucky with her job, she has a good salary so they do not have financial difficulties and her bosses are also quite understanding as well.
“Whenever I had to go somewhere because of Panna, I could do my work at night or on the weekend. I did not work less than any of my colleagues with or without a family. Sadly, the result of this was that many times when we arrived home I had to sit down in front of the computer instead of being with my daughter.” – says Júlia who changes workplaces soon.
The mother’s worst fear is concerning her 17-year-old daughter’s lack of independence.
“She could be left alone, but only at home and only for one or two hours. She cannot use public transport, and if she is ill and I have to get back to work after visiting the doctor, the only person I can ask to look after her is my 82-year-old dad. Moreover, she is in her teens which is not easy for us, even though she is open and nice with everyone, she cannot handle it when the boys in her class pick at her.”
Currently Júlia gets help from her family. While her mother was alive, she stayed home with her, and now her father, her sister-in-law and her mother-in-law take part in raising Panna.
“I am scared to think about what will happen to Panna when I am no longer with her. It is no coincidence that in every month I spend the most amount of money on line insurance and pension savings” said she.
“We are in need of workplaces where those that are like Panna could do some work which is useful for the community. Of course, there are some good examples, but not enough. I do not even know how long I can cope with such pace. Sometimes I am thinking that the parents of children with special needs could become pensioners some years earlier than others, and single parents even more so.”
Yet, despite of all this, Júlia thinks that she accepted this task, that was left to her by life.
“What does not kill you, makes you stronger. I love Panna very much and I am proud of her and of how much we bring out of each other. Of course, sometimes it is rather exhausting that I do not have time for myself, but soon we will do everything together, so this will not be a problem. Finding a partner is hard: I had some attempts, but it is hard to accept for an outsider that my daughter and I come in a package, and that my daughter has some weird habits – which I am completely used to. Moreover, I am the only stable point in her life, therefore she can get quite jealous about any outsider.” she explained.
However, the situation also gave very much to the life of this family.
“The little miracles of the day and my most precious relationships I got from Panna. When after a busy day in the bank industry I went to see Panna on a cultural festival for children with special needs, I saw a group of children with Down syndrome dancing while sitting on a bench which was a huge achievement for them. Then I started to see things differently, and I realised what is really important. Ever since, I go there regularly, so that it would remind me of what should be held as a problem instead of the thing we fuss about every day.”
Projekt száma: HU01-0006- COOPER-B1-2017
Projektgazda: Egyedülálló Szülők Klubja Alapítvány
Projekt címe: Egyedülálló vagy különleges? Egyszülős családok Magyarországon
Támogatás mértéke: 30.000 EURO