On December 3, the whole world celebrates the Day of Persons with Disabilities. On this day, we urge our readers to pay attention to the problems and challenges that these people and their loved ones face, and also to join charity events aimed at helping! We also post an exclusive interview with Katya Lishchenko.
Katya Lishchenko – psychologist, psychotherapist, leader of educational projects and psychotherapeutic groups, accredited Gestalt therapist, tells her personal experience of “difficult motherhood”. Alina’s daughter has a complex brain pathology.
Katya, tell us your personal story about your daughter Alina. This is a “special” child. What is the diagnosis? And this “special story” will help many.
Alina is now 12 years old! 12 years ago, everything started like everyone else: contractions, a maternity hospital, and then everything started spinning … and it was scary! It’s scary when a newborn baby is in intensive care. Terrible and during rehabilitation. Lack of information and opportunities in the city. Frightening is the diagnosis. Alina has a complex brain pathology, focal epilepsy, and a lot of concomitant diagnoses. Alina is difficult to learn. Classes in ordinary educational schools, even with inclusion, are not suitable for her, and in special institutions, they cannot provide her with the opportunity to be with children from a development perspective. For 12 years we have been looking for opportunities! Alina plays the drum set, goes to table tennis! Fine motor skills suffer greatly, speech suffers. We are doing our best, we are working on a motorboat, we have been working with a speech therapist for 9 years.
What happens in a family when a “special” child is born?
Shock first. Show for everyone! Next is the fight for life, the health of the child!
And of course, constant despair, the “hells” of our family medicine. It’s really not an easy path. Families often become isolated from pain and horror, from anxiety for the future of the child.
How do family and friends react to illness?
Everyone reacts very differently! More often, they can move away from confusion, sympathize, empathize, but basically, the family is left alone with a similar problem
You are a psychotherapist, how often do women and families come to you with similar problems?
Unfortunately not often! For several reasons:
The pain experienced by the mother is very “conserved” and difficult to deal with. Moms go headlong into rehabilitation with the belief that this nightmare will end.
Coming in and “wasting time for yourself” is very difficult when there is a more visible problem in the family. Women sacrifice everything, including themselves. Often in families with such stories, all finances and all the time go to treatment, and this is another reason why women do not seek help and take their personal emotional state into the background.
Are there support groups for mothers with “special children”?
It’s different in different cities.
Bigger ones are more likely. Basically, these are self-organized groups of mothers. Unfortunately, there are very few government programs.
And as a rule, the main task is the rehabilitation of the physical and mental child.
Who helped you?
People! I hit all the bells, knocked on all the doors!
And they opened it to me, I was not silent … it is very important to speak and ask for help.
I did not close, although there were difficult periods. In addition, I went to a psychotherapy training program and in parallel to individual psychotherapy. It helps. It helps to feel, talks about pain, shares it without shame, guilt and fear.
Can the illness of one child affect the life trajectory of another?
No matter how hard we try, unfortunately, yes! This is a given! Inevitability! This is something that affects the whole family.
What difficulties do we have in this country in this matter? What would you recommend paying attention to?
The first is funding. On the psychological state of families. And the attitude, the attitude of teachers to such children. Finding a person with a kind soul and a big heart is also important and not always an easy task for parents.
There is still not enough place in the sun for our children.
Tell us how “they are not afraid of difficulties”, “how to love” and how to be a “strong mother”?
Go to people, ask for help, confess weakness!
Love a child, love your story, even pain and fear.
Be sure not to be afraid to feel pain, to be honest with yourself not to deceive yourself! This is a difficult story, very difficult for any family and doubly difficult in our country, in small towns.
Also in this topic, paradoxically, there is still a lot of shame and guilt.
We really need support programs for families, mothers, and children. Programs that will include work with psychotherapists.
And every family needs to remember: you have a “special child” – you don’t need to pull the child to the “norm”, but make him happy here and now!
And she becomes very happy herself with all her might, to realize herself even with such circumstances!
And finally: What is Alina now? What is the mother of Katya Lishchenko?
I can talk about this for hours.
I am happy! I do my best! I forgive myself for moments of despair and impotence.
Alina is a miracle, the sun! She looks like a spaniel puppy to me: joyful, agile, honest in her emotions, and spontaneous).
