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Every day in Russia six children with Down syndrome are born. Parents refuse every second. Doctors also persuaded the mother and dad of Arina Kuzmina to be prudent and leave her in the hospital
We help consultations of families raising children with Down syndrome collected 421,667 r 417,396 RThe collection of funds is over
As sentenced
I constantly call my wife. They let me go to her ward. She is weak and somewhat detached. Emotions are stingy, her behavior does not seem adequate. Such a disaster, and so calm. I give convincing arguments. No matter how painful it is, it is necessary to refuse. After all, children are lost. It happens ... Life continues, it will continue with us. I persuade her less often to go to the department of newborns, not to pick up Arisha. Do not become attached to the child. Do not tie a thread that will become thicker than an anchor chain.
This is an excerpt from the letter of dad Arina Alexei Kuzmin. It was sent to me by Arina Olga with a comment: “The husband wrote how everything really was. There right to tears. " He wrote it, of course, not to me, but to himself - he began when Arina was two months old, and made the last record five years later.
Arisha photo: Vladimir Averin for TD 
Arisha with mom photo: Vladimir Averin for TDHe wanted to recall, live and accept everything that happened to him and his wife after the news of the diagnosis. In order not to walk around the bush, pretending that these unbearable thoughts and irreparable words were not, but to pass through. When he wrote, he did not plan to show anyone at all, and it turned out too honest and scary. At the very beginning, he admitted: he is not at all of those strong and whole who meets any misfortune without panic and cowardice. He is an ordinary, living person. And he felt that he was brought down, betrayed, not warned, did not give the right to choose.
Panic thoughts. Our former life, all plans and dreams collapsed. And she is to blame for everything. This is a tiny helpless creature. Angel with dark blue eyes ... or a demon? (From the letter of Alexei.)
Arisha on a trampoline photo: Vladimir Averin for TDThe Kuzmins have three children - the eldest daughter 33, the middle son of 14. Arina wanted and waited three years. Olga’s mother gave birth to her at 44. Not a single screening showed any pathologies, Olga herself refused the fence of amniotic fluid : the eminent “professor” led the pregnancy, there was no concern. Then this professor darkened during the cesarean section; avoided any questions about the child; Then Olga and Alexei “as the sentenced” were brought into the office and quietly, looking aside, they reported the complete trisomy of the 21st chromosome (one of the varieties of Down syndrome along with mosaic trisomy and translocation) ; And then they began to talk about the unsuccessfulness, a lot of pathologies associated with the syndrome and appeal “to prudence”.
"Between sticky fear and conscience"
After that, a quiet terrible conversation with Kuzmina doctors left Arina in the hospital, and they themselves tried to understand how to live on: they were in the Department of Education, a correctional school, among acquaintances raising children with syndrome, in the temple. The department advised not to think about boarding schools and calmly raise a child, families assured that “everything is not so scary”, the priest called Arina “salvation” and “bright joy”. But the decision never came.
Arisha in Gamak photo: Vladimir Averin for TD 
Arisha photo: Vladimir Averin for TDThoughts, thoughts, thoughts ... Search for a way out of a hopeless situation: a temporary refusal and our weekly visits to the child; private boarding house with permanent residence; Specialized Physical Division Board ... Non-trivial ideas are to find adoptive parents in Europe or America. Attempts to find a compromise between sticky fear and conscience. Empty. It doesn't get easier. (From the letter of Alexei.)
In the maternity hospital, Kuzmin was given a brochure of the Early Assistance Center for Children with Downs "Downside AP". And they went - talked with a psychologist, sat on a group of preparation for school. Olga is sure that Dawnside then acted very correctly, putting them into the group: “Everyone thinks that it is some vegetables growing, not children. This is completely wrong. They are very alive, enterprising in some matters, smart, very affectionate and sincere. ”
Arisha photo: Vladimir Averin for TDThe time that Kuzmin was given to the decision on the refusal ended. Arisha was waiting in the hospital.
Gradually, an understanding comes that nothing was swollen. That it is impossible to escape from yourself. Forget, not to think it will not work. I am afraid of the future. I don’t know if I can love my child, accept him as he is. But I clearly realize that we will not find the strength to abandon her. I know for sure that the abandonment of Arishi will burn us from the inside in ash, in ashes, to the ground ... (from the letter of Alexei.)
Arisha on a trampoline photo: Vladimir Averin for TD 
Arisha on a trampoline photo: Vladimir Averin for TDEleven days after the birth, Kuzmina returned home. Threesome.
"Watch up, hold on"
And after a couple of months, Alexei no longer lowered Arisha with his hands. The most did not help conversations with specialists, but the parents of the Dawnside AP wards - Kuzmina regularly carried their daughter to the fund to the pediatrician and met “their own” there.
Arisha on a trampoline photo: Vladimir Averin for TD 
I do not see among them the unfortunate, suppressed people. On the contrary, they are open, kind, positive. They look at our girl: "What a pretty!" They look at us: “What are well done! Here we were in severe depression in the first year. And you are aware, hold on. ” And we invigorate, and hold on because we see their example. ( From the letter of Alexei.)
But the anxiety did not let go. How will it develop? When will it start to speak? Will he be able to study? And to study children with Down syndrome is really difficult. An extra copy of the 21st chromosome-the same trisomy-leads to changes in the anatomy of the brain. The hippocampus - the area in the temporal lobe, responsible for the transformation of short -term memory into long -term, suffers especially strongly . It is very difficult to memorize information, build logical chains from it and navigate in current events with such violations, namely, the entire “standard” education system is built on this.
Arisha examines plants in a greenhouse photo: Vladimir Averin for TD 
Arisha photo: Vladimir Averin for TD 
Arisha plays in the gazebo photo: Vladimir Averin for TDThe strengths of people with Down syndrome are imitation and visual perception. On them, defectologists and speech therapists of the center are betting. In "Dawnside AP" children are taught according to the methodology of global reading - they use visual incentives (pictures, toys, signs with words) in order to "wake up" speech and improve memory. How to read a long and complex "apple"? First, look at the picture with a signature, then the apple itself, a sweet piece, attach to the image - is suitable. Then see the “apple” from the letters on the plate, absorb with your eyes and, without dividing into syllables, remember. Even those children who still do not say or with difficulty pronouncing individual syllables and sounds can learn to read this (due to a disproportionately small cerebellum, people with Down syndrome often have problems with articulation): eyes will remember how the word looks and will accurately correlate it with the right photo or picture.
Short sounds of happiness
“Downside AP” gave Kuzmin the curator-defectologist-for the first one and a half years, she regularly came to Kuzmin home, brought toys, drawings, evaluated Arishi’s reactions, advised Olga, what teaching materials can be implemented in the first months. She told how to teach global reading, to develop speech.
Arisha in the greenhouse photo: Vladimir Averin for TDSpecial parental joy: our girl begins to smile and tries to talk. Yes, talk! Such a cute and funny baby babble. Short sounds addressed to you. Happiness. ( From the letter of Alexei.)
There have always been many defectologists and speech therapists around Arina: according to an individual rehabilitation and habilitation program, developed for children and adults with disabilities, she has a whole range of medical and social services. “We went to other experts in parallel with Dawnside . But they are not familiar with the techniques that Dawnside AP gives. A defectologist [in the Center for Psychological and Pedagogical Rehabilitation and Correction of Eastern Moscow] gives material more complicated than the child assimilates. They drive like a regular school curriculum, ”says Olga.
Arisha began to go to the fund at the Foundation - she taught poems with a speech therapist, was engaged in dancing, yoga, an account and reading. By five, I already read and counted to ten, from any place I quoted Brodsky’s “working alphabet”, put a house with a nanny and did not suffer condescension: it laid out completely and demanded the same from others.
Arisha in the garden photo: Vladimir Averin for TD 
Arisha with mom photo: Vladimir Averin for TDOur rather short path has not been difficult. It turned out that there are many bright, kind people around us who are ready to help us teach and raise a child, for which they are my sincere words of gratitude. A special place in our lives is occupied by the Downside AP Center - a community of people who saved many children and their parents. These people are a system of coordinates of normality, normality in which children are raised in love, and not betrayed. ( From the letter of Alexei.)
This year, Arina turned eight, and in the fall she goes to the first grade of a correctional school, to which, according to Olga, she is very well ready. She likes everything that children usually like: cartoons, books with pictures, gadgets, cookies. And yet, for some reason, mustachioed men. In Dawnside, she has a beloved employee - every time he comes, she runs to hug him and asks to let his mustache touch. He never refuses.
A few years ago, my closest friend in an interview with his acquaintance told the fact that a syndromic child is growing in the family of his loved ones (us).
- Down? Well, what are they doing with him?
- How what? Love ...
(From the letter of Alexei.)
Arisha photo: Vladimir Averin for TDOn a two -month program for adapting children with Down Syndrome, the Dowside AP Foundation spends more than 400 thousand. These expenses include the salaries of specialists - defectologists, psychologists, speech therapists, as well as insurance premiums, the cost of maintaining the building, utility bills and much more. The charity fund for supporting people with the Syndrome of Love Syndrome collects these means so that 60 families from the sentenced turn into happy, in those who are fighting and holding on. Any donation is a chance to survive. Let's substitute the shoulder. Thank you!
We talk about various funds that work and help in Moscow, but Moscow experience can be useful and used in other regions of the country.