„Those who never experienced this, do not understand what it means to raise a disabled child alone”
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’ project we met with Anna who talked about the difficulties one has to face while raising a disabled child alone. Now, Barbara shares her story about her everyday life with her disabled daughter without any support.
“I have two daughters, Niki (8) and Zsanett (10). My elder daughter was born with a rare condition affecting her nervous system (Atypical Rett Syndrome) which has many subsidiary symptoms as well. As a consequence, she is multiply disabled and constantly ill. She cannot walk and talk, she has to wear diapers, she has to be fed and provided with water. She also has digestive, orthopaedic and neurotic problems as well. She needs to be looked after 24/7, which becomes harder and harder as we grow older.” says Barbara, who finds paralysis the hardest to face.
“Many times, I see on Zsanett’s face that she wants to communicate through her howls, but because she reacts to everything with almost the same sounds I am not able to find out what her problem is, what hurts or disturbs her. It could be the tag on her clothes or that she is in great pain. And the howl can be constant for hours or days without a break which can be quite exhausting both psychologically and physically, not only for me and the child, but for the little sister too.”
No father, school is only occasional
Moreover, Barbara has to face all this on her own, since the father of her children left her, he rarely visits his daughters and does not give any help financial or other. Not to mention that the little sister’s situation is even harder, since she is overshadowed by her sister, it is a problem to get her to her friends or sport programs because there is no one in the little village who can look after her elder sister for the time being. The grandmother wants to help, but she is ill too, which makes it hard for her to take part in caring for her disabled grandchild.
“I feel it more and more that we get isolated and get closer to the outskirts of society.” says Barbara, who feels lucky at least, because there is an institution not far from them (14 km) that accepts disabled children.
“Sadly, she can develop only when she is in a calm and open state, which is very rare. At school she is very loud, sometimes unbearable, which leads to conflicts with other parents and pedagogues but thankfully the leader of the institution is always on our side, and on the side of multiply disabled children.”
The family gets help from a nearby city’s supporting service, which manages to take Zsanett to the school and bring her home. Last year they found a relief service as well in Budapest, which can take in the child for a few days or one or two weeks, leaving a little time for the parents and the brothers and sisters.
“Perhaps it is a cliché to talk about the importance of me-time, but those who do not live with a situation such as this, will never understand how important this could be for us, not only because of selfish reasons, but also for the child, since if the parent is relaxed and balanced and perhaps a bit more patient, the child will sense it which will make cooperation and understanding easier.”
Barbara gets help from the workers and parents of the Hungarian Rett Syndrome Foundation. Thanks to them, Zsófi could go to therapy, summer camps, workshops, parent meetings, and other programs.
“These occasions are very important, since this is where I can feel that we are not alone, we have someone to turn to and somewhere to belong to. I had countless questions to the fellow parents and I always benefitted from their answers and ideas.”
Only with the help of the family
Barbara cannot work at present since it is not compatible with raising a disabled child.
“Zsófi can spend only 4 hours at the school every day. Because of that – and because of the care allowance I get – I can work only 4 hours per day, however there is no workplace where I can work every day from 8 to 12. Not to mention that I cannot get enough time-off for when the child is ill and has to be taken to controls. I am left with saving the money I can and casual labours.” said the mother, who does not want to hide the fact that it is financially very difficult for them to go on.
“To make a living as a single parent, pay all the overhead expenses and raise 2 children, especially if one of them is disabled, is impossible. We have given up on development all together since we cannot afford it, but that is not the only cost that comes with a disabled child. The cost of medicines and the diapers can be as high as 10.000 Ft, I have to pay for the supporting service, and there are even more costs. If my mother and sister did not help us from time to time, we would not last for long.”
It is a difficult situation psychologically as well, mostly because she knows the time will come when she will have to put Zsanett into an institute.
“I will not get younger, and anything could happen to me which will prevent me of looking after my daughter and I do not want her sister to think that she should sacrifice her life because of this, and there is no one else we can rely on. Those who decided in favour of the institution all say that they should have made that decision earlier. It is an extremely hard decision to make and it is even harder to start the process. It took 3 years for me just to go and look around in an institution such as this. Sending the petitions was a rush decision, because I knew that I would be hesitating if I started thinking about it.”
It is not only rainbows and stuff
“Many people do not feel the weight of this situation, what it is like to cope on your own with a child with special needs. What is it like to listen to her howls for nights and cry because you cannot make her pains go away. What is it like to be sleep-deprived. They think it is a sweet and easy life because I stay home with the child, they think I do not have anything to do, I just rest at home and everything is nice and easy. But it is not only rainbows and stuff. I think I got disappointed in the people living around me. I get more compassion and appreciation from strangers. They say a lot, that I should ask for help. But I really cannot. Sometimes I do. But when they refuse or say to me that I am a 32-year-old strong woman, I should manage, I start to think whether it was wise to ask at all.”
“Despite of all this I try to be as happy and positive as possible, but I do not always succeed. Feeling sorry for myself will not solve my problems, but sometimes you just have to collapse in order to be able to stand up and start again.”
“Not long ago, my little daughter wanted to play a trick on me, but it did not really go as planned, and she said to me, crying: “Mommy, you are so not fun these days!” and then I realised, she is right. It was a terrible feeling to realise that I became dull and – even if not completely – unhappy and this is visible for the people living around me. Yet, for my younger daughter I should be cheerful, vivacious, and strong” – told us Barbara when asked about her everyday life.
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