“I did not care about her flaws, I was happy that she had only this much”
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.
We met Anna during our project: ‘Single or Unique’ where she talked about the difficulties she has to face as a single parent who raises children with disabilities.
“My child is four and a half years old, but I knew before she was born that I would have to raise her alone, since her father left us during the pregnancy. Since then, I had another partner and another child, however this relationship has also ended, therefore I was left alone with the two little ones.” This is how the mother, who had to face that her elder child was born with disabilities, describes her situation.
“My eldest has Treacher-Collins syndrome, which is hereditary and affects every 50000th pregnancy. Because of this, on the left side of her face and neck, the bones are smaller and the muscles are shorter. Her jaw is oblique and her ear did not evolve completely and her auditory tube is shorter, her ossiclies smaller than normal. She also has to be on a milk free diet, which makes the situation even more difficult.
Anna’s life is easier now, during the younger years of her child they had to go physiotherapy, massages and to a remedial teacher, which was hard to manage. Today they only have to go to a control every now and then, which is compatible to Anna’s work schedule. But it was not always like that.
“Sadly, I do not have any help, I could only start working not so long ago, because while she was younger, she got ill easily. Today I can manage to have a full-time job. Fortunately, the people at my workplace are very understanding. I did not have any problems because of having to leave earlier or having to take sickness benefits for a longer time because of the kid” she explained.
The mother does not get any help besides a higher amount of family allowance, even though she is in need of help, since she has to bring the food for her child (breakfast, morning and afternoon snacks) because the kindergarten is not able to give a milk-free meal.
Yet, despite of all these difficulties, they live as any other family.
“First, everyone asks questions, but they get used to it in time, and see her as a completely normal child. Of course, there always were and always will be people who look at disabled children with pity but we tend not to care about these. We can do free time activities as well, just like any other family. First, it was unusual at the kindergarten, both for the children and the teachers, but this did not last for long. She eats a little slower than the others, and her speech is hard to understand sometimes, but luckily, they see her as an average child and act around her as they would around any other. They do not pick on her and do not leave her out of anything.
Today, Anna managed to accept her situation.
“When she was born and the doctors told me of her condition, I did not care about the flaws she had, I was happy that it was not worse. Her situation could have been much worse, and we like to emphasise that she is not ill. She has flaws but who does not? We do not hide her just because she does not have an ear and she can handle it very well if someone asks about it or stares at her on the street. We are happy together and that is the most important thing.”
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