I would like to tell you about a mother who succeeds in taking care of her child on her own regardless of the state of emergency’s restrictions. A woman who I try to support even though it is done remotely. Her 4-years old son Mitko is diagnosed with Sotos Syndrome, Epilepsy, and Autism.
The Sotos Syndrome is a genetic disease, an innate anomaly that characterizes with overgrowth, developmental delay in mental and motor abilities, disruption of speech and language development, and other problems.
Mitko still does not express significant interest in the surrounding environment, he does not tend to make eye contact, does not respond when being called, does not follow instructions, does not play with toys, makes stereotypically repetitive movements. There is a lack of social and communicative abilities and autonomy skills.
Mitko’s father is an international driver and is continuously away from home.
Therefore, the childcare responsibilities are all done by his mother. However, she does not complain. Even now, when it is even more challenging during the time of quarantine. I have never seen a helpless face expression and I do not feel that she is hopeless now, when we communicate remotely.
A few days ago she told me that her husband returned to Bulgaria but due to the prevention measures they cannot meet at all. In order not to put them at risk of transmitting COVID-19, he did not go back home, but when to a TIR parking lot outside Sofia. From there, he left directly to Europe. They only spoke on the phone. He was unhappy that he could not be with his most favorite people, that he could not kiss or take care of his son.
Milena says that this is his profession and despite the difficult situation, she never asked him to leave his job, as he is her main support and a financial provider for the family.
Whenever he comes back from a course, all three of us are extremely happy. We do everything together – shopping, walking, laughing… these magical moments make the distance more bearable.
I asked Milena how she felt as a mother and a wife in this situation. “It is not about the distance, but about the feelings”. Even though they are not together all the time, she knows which radio station plays in the truck and all those little details that make them close. They often speak on the phone, and the father knows what time Mitko got up, what he had for breakfast, what he did during the day. On the phone they say things, that would not have been said otherwise. It is not easy for Milena to explain to Mitko where exactly his father is, and when he is going to return home. She does not know how to explain to him how much time two months are. Time is a relative thing in their family.
The most difficult thing for her is that the responsibility for the child is not a shared one. “You know that if something happens, you are not only responsible in front of yourself, but also in front of the other person”. This is where the greatest anxiety comes from.
However, Milena is a bold woman.
She is actively doing the things she has to do. And she has no time to feel lonely. While she is preparing special food, as Mitko still cannot chew properly, we discuss on the phone the activities that I recommend for him. They actively work together at home – they play different games so that he can learn to use different objects, to eat with a spoon by himself, to communicate. The child marks some success – he has recently started to scoop food and direct it towards his mouth.
“I wake up in the morning and realize that the battle starts again. It is not easy, but the absence makes the heart love even more” – says Milena.
I continue to be available on the phone as it is important during those days, the early childhood development experts, the psychologists, the family consultants, and social workers, to support vulnerable children and families who need us.
Early Childhood Intervention Senior Specialist at Community Support Centre “St. Sofia”