This year, on the Day of Rare Diseases, all the mothers of children suffering from such diseases want to have a break. Thus, the Public Association Children of the Rain, which includes more than 50 parents whose children are diagnosed with rare diseases including autism, launched the project Three hours for mom, to provide help to families of children with special needs. The mothers say that many of them did not have a few free hours for years, and in these three hours, when the children could stay with a therapist, they would be able to recharge their batteries.

Mothers who are part of the Children of the Rain Association confess that they spend all their time caring for the little ones, as they have special needs and cannot be left with relatives. The coronavirus pandemic has only made matters worse. 

Stress, Despair, Depression

Ina Galouza is a mother of two girls. The youngest of them is six years old and according to her mother, the girl has several diagnoses- extrapyramidal syndrome, cerebral palsy, dyskinesia, hyperkinesia. The mother’s daily life revolves mainly around the child. 

“It is considered that a woman who takes care of a child with special needs should stay at home and for some reason not to appear in public. I mean, somehow, it means not leading a normal lifestyle. But how can she take care of her child, if her psychological state is quite affected – permanent stress, states of despair, depression,” points out mother Ina.

The pandemic has worsened the situation with restrictions to go outside. At first, Ina’s child did not understand why she is not allowed outside. “There were hysteria crises and, in general, a behavior that we, the parents, have not known until now. Once the restrictions were relaxed, we were able to go out, but of course, without physically contacting the people around us,” she adds.

In Ina’s opinion, the Three hours for mom project could greatly help mothers who are personal assistants and are with the child 24 hours a day. “It would be a great addition for us, as mothers of children with special needs. Yes, not everyone can stay with them, as it is unpredictable how they might react to some people. But if I know my child is staying with a specialist, I can pay a visit to a medical center or maybe even a friend. Sometimes, these hours could even help the mother to find a part-time job, which would distract her from the child’s challenges,” adds Ina.

“We have to keep moving on”

Olga Donca is 38 years old and has three children, including a 14-year-old girl with autism who can hardly speak. “Instead, she cries often and not everyone can stay with her,” points out the mother.

The situation in Olga’s family is complicated because the third child was also diagnosed with autism: “The third child has an easier form, but my psychological state is at the limit. Of course, it is not like the first time you find out about your children’s health, but it remains a difficult situation. You understand that you cannot leave two children with anyone, just to take a break,” she explains.

Olga adds that going out somewhere on her own has become a luxury. She doesn’t even think about it anymore. “But I understand that mother’s psychological state influences the whole family. If the mother is not in good condition, everyone is stressed. So this three-hour project is welcome. We, mothers, can’t anymore. We have to keep going because it is a necessity. On the run we lose our committedness as, besides with children having online lessons, where they still need our help, mothers have a lot of other things to carry out,” concludes Olga.

“There is no way this project cannot be good”

The Association Children of the Rain leader, Doina Losețchi, mentions that the project Three hours for mom has been planned for a long time and targets mothers because the mother is the one who stays all the time with the kids.

“Personally, everywhere I go, my little girl, Alexandra comes with me, be it a meeting or to the town hall, ministry administration, directorate, or medical center. If she’s not at school, she’s with me. And Alexandra’s reaction differs everywhere,” says Doina.

Doina claims she would need three hours, while a specialist – behavioral therapist or physiotherapist takes care of her daughter, who always needs rehabilitation. In the meantime, Doina could simply rest. Her little girl Alexandra was diagnosed after many investigations, with Rett syndrome – the most serious form of autism spectrum disorder.

“Everyone needs this free time, especially mothers of children with special needs. I know some people wonder about the rest of the family – father, grandmother, friends. In my case, no one else can handle Alexandra,” adds Doina.

If she could take three hours off, Doina says she would like the simplest thing – to sit alone on a bench outside in the park, and not think about anyone or anything.

“This is how I would recharge my batteries. And I assure you that when I return, in three hours, I will look at my child with different eyes. I love her very much, but she requires so much care and attention that sometimes you reach the minimal limit. If you could have this time for yourself, you would come back home and see the same things as usual, but from a different perspective. There is no way this project cannot be good. If you were to conduct an opinion poll among the mothers of these children, they would say the same thing. Now, multiply by a thousand and you will understand our situation,” she exemplifies.

The association started a fundraiser for this project, to raise the needed 9,500 euros, so that a family, at least once a week, can benefit from three hours of time away from the kids. The Association will implement the project in an identified family, where the situation is worrying, after collecting the necessary money.

 A means of preventing the occupational burning syndrome 

The psychiatrist from the Department of Psychiatry of the Nicolae Testemițanu University of Medicine and Pharmacy and the psychotherapist Andrei Eșanu refer, in the case of mothers who are also personal assistants, to the concept of occupational burning.

“It occurs in all kinds of jobs when you have a busy schedule and it is stressful. One of the features of occupational burning is that it appears a mental distance to work. Of course, your child is here, but you get tired anyway and you become more irritable, more nervous, and sometimes you can’t even control these emotions. The occupational burning syndrome is also manifested by the fact that you no longer know how to deal with stress, and because of this, sleep problems, headaches, muscle tension, and other difficulties related to mental health can occur. In this case, they are mothers of children with special needs, but also personal assistants. This is a specialty, it’s a job, which compared to others, the working hours never end, and the risk of occupational burning increases,” warns the specialist.

At the same time, he points out that one of the mechanisms for preventing occupational burning is the clear delimitation between professional and personal or family activity.

“In the case of these mothers, the period of emotional recharge is more difficult to achieve, if not impossible. The breaks in which you know, on the one hand, that your child is receiving care and is safe, and on the other – that you can rest in peace, they are extremely welcome and could significantly reduce stress levels,” suggests Andrei Eșanu. 

Founded in 2014, the Children of the Rain Association helps families of children with special needs. International Rare Disease Day is annually celebrated on February 27.

A rare disease is considered any condition that affects less than one in 2,000 people. Today there are about 8,000 rare diseases in the world, which influence globally 3 million people.